A very long day at Shriner's today...we had a 2:15 appointment, and we finally saw the Dr. at 4:30. I learned many things from him in the first few minutes, which were kind of exciting. I had planned this long speech about how I am trying to balance Abbie's total recovery. Turns out, he spoke the words for me.
Our PT (who waited that whole long time with us!) and I explained how variable Abbie's tone can be. Sometimes she is limp as a noodle, able to relax and use her body. Other times she is tight, stiff, and locked up. Dr. O turned to our PT and said, "It's the cortex override. That's what make kids like Abbie so unique. They are impossible to predict, giving prognoses is just really taking guesses." "Cortex override" means that Abbie's cortex, or the white matter in her brain, is able to override the spasticity in her muscles, this is what normal brains do all the time without us thinking about it. Yet another professional telling us about something that Abbie's brain can do!!
Dr. O explained that children who are injured during their childhoods are much different than children who are born with brain challenges. Their spasticity is often variable, like Abbie's, and it makes treatment decisions more difficult. He nodded his head as I explained that I have been trying to strike the balance between her orthopedic needs and her overall recovery...not willing to drug her with Baclofen because it hid her potential, not willing to do serial Botox because I think it would interfere with the healing process that is ongiong. I was very pleasantly surprised that we seemed to be coming from the same direction.
Alas, the day was not over. We headed to the X-ray waiting room where I smiled about the cortex override...Abbie's brain IS healing, and this is yet another indicator! We had films taken of Abbie's spine, which is fine, and her hips, which are not. The right hip is still about 80% out of the socket so that hasn't changed since last year. What has changed, however, is the socket that the bone fits into. The angle on it is changing, which leads to outcomes and options that are worst, worse, and bad.
If we leave things alone the hip may totally dislocate. This would not be all bad, but could result in spine issues as Abbie sits on hips that are uneven. What would be worse is a hip that is almost out, but not quite. As it hits the socket improperly, both the cup and the ball become disfigured and can never fit together again. This can also be quite painful. He described one surgery where they just remove the ball at the top of the femur, which can result in very floppy hips, obviously, and other problems. Lastly, we went over the surgery he has described to us in the past...removing about 1" from each femur, repositioning the balls and using a blade to secure it to each socket. He will also now have to do some reshaping of the right socket.
We asked many, many questions, and he showed me the stainless steel hardware. It is a 5-hour procedure, and this is NOT what we want to do, but after looking at her films, we do not see any option other than surgery at this point. We are hoping to schedule it in mid-September. She will be in a chest to calf cast for 3-4 weeks post-op, so it will be a very trying time for her, and for all of us. Please, join with us in beginning to pray now that all would go smoothly, that we would get the results we are hoping for, and that her pain would be as minimal as possible.
I am still in an emotional freeze on this issue, just moving forward with doing what is necessary, not allowing myself to think about how I feel about it. I will be relying heavily on God's grace to get us through this, especially the painful post-op part. I can't escape the thought that I will be making her suffer. I asked Ray and our PT, "What did I do wrong? None of my other near-drowning friends are dealing with this."
Ray said, "Whoa, stop! Many of the other kids were younger when they were hurt and haven't grown as much. Others have chosen to do Baclofen and Botox and things we didn't really do...what we have gained is Abbie's cognition, awareness, communication..who knows how much of that we would've gotten if we'd made other choices." Our PT agreed, and this did make me feel better. There are no right answers, although at times it can feel like there are many wrong ones.
Please pray for our family, as I sense that this next 6 weeks could be a long period of holding our breath. Abbie was injured so suddenly, and all the following surgeries happened quickly, that I've been spared a prolonged season of dread until now.
I must tell you I smiled, though, today, knowing that we are not facing this alone, and will be covered by your prayers. That means more than I can ever say!
Monday, July 30, 2007
Sunday, July 29, 2007
Finally, a picture!! My friend Sandra took this in our yard yesterday. I suppose it's way past time to post a new family picture, since in the last one I am taller than Chase (back, right) and Kyle (back, left). Matthew is in the blue shirt, and RJ is in red. I also wanted to capture what feels like a split-second opportunity when no one in our family has braces! Abbie was grinning as we sat down, but her smiles come and go so quickly that we didn't get a picture of one.
Abbie has been doing great in important ways while being challenged in others. She has needed quite a bit of oxygen this week, which prevented us from going to PT/OT on Thursday and Speech clinic on Friday..a big bummer for my social girl. But, as I always suspect when she needs oxygen without having a junky chest, it was just more healing.
On Thursday I showed Genevieve Abbie's shape bucket that we are using to reinforce her tactile and visual identification of shapes. Later, I walked in to find them working with the shapes, but Genevieve was laughing through tears. Obviously, I asked why, and she said, "Oh! I just got off the phone with my auntie telling her about this, and now I can tell you! Abbie is tracking with her eyes!!" Not that I doubt Genevieve, but we have been waiting so long for this, that I didn't want to get excited prematurely. So, they showed me! First Abbie followed the red triangle up, then down very easily. Following to the right and left was harder, and a little slower, but she did it!!
Her left ankle was injured three weeks ago, and since then her standing program has been virtually nonexistant. I wanted to get her up again, so we tried on Friday. I put her at about 70 degrees inclination, and she did great for twenty minutes. I was happy with this, but wanted to see how she would do if we took her to 80 degrees. As soon as we increased the angle, she sighed deeply as if saying, "Oh, thank you!! It feels so good to stand up!" She ended up staying on her feet for 25 minutes, which was amazing given that she hasn't been standing at all lately.
This coming week has many important appointments. The one I am praying the hardest about comes tomorrow, as we head to Shriner's. I know we will get new films of Abbie's hips and spine, and will surely discuss the possible hip surgery. I am so conflicted. I know that orthopedically she probably does need the surgery, but I am looking at her total recovery. She has a fragile brain architecture and is gaining new things each day it seems. I don't know if I want to jeopardize that with a lengthy surgery (i.e. lots of anesthesia), inserting metal into her body, dealing with post-op pain (and the meds to control it), as well as the prolonged recovery. Please pray for wisdom in abundance!
On Wednesday we will meet with her case managers to update her care plan. I am hoping this will be a relatively uneventful meeting. Thursday will be our first official IEP meeting at the school. Again, I am hopeful that we have a good feel for how this meeting will go, so it should not be a confrontation or struggle, just one step in the process.
Overall, these are good days with Abbie being very present and happy most of the time. As we ease into August, and her birthday nears there is so much to be thankful for. I am not postponing joy any more -- as in waiting for her to be healed to be happy. There is joy (and enjoyment) in each day for us now, some days it wears a bit of a disguise, but we've become more skilled at finding it in the shadows.
Friday, July 20, 2007
True Strength
An emotional rollercoaster fortnight has given me some profound lessons. The teacher I am in awe of this evening is my dear friend, Remle. I hope that those of you who are journeying with Abbie have been blessed, as I have, to follow Remle and her husband Jim as they travelled a narrow, uphill path that led Jim to Heaven on July 2.
On Tuesday, July 17th, Jim's 39th birthday, there was a celebration service at the same spot where Jim and Remle were wed over ten years ago. Under palms swaying in the breeze, overlooking Jim's beloved ocean, I saw the glory of God made manifest more radiantly than I have ever witnessed with my eyes. My precious friend, now a young widow and single parent, glowed in her white dress and haku lei. Not only did she summon the strength to welcome each of us with a smile and hug, but she danced in praise of the God she is depending on to "never let go"...as she raised her arms and face to heaven during her hula, I observed the truest worship I have ever seen, that which flows from a broken but trusting heart.
True strength is not always brutish power covered in armor and sweat, sometimes true strength is noble grace, clothed in white and ornamented with flowers. Rem, if you are reading this I am exquisitely blessed to call you sister and friend, and am so terribly proud of you.
Abbie is well, and in the midst of another cycle of healing. Like an alarm clock, complete with bell ringing, Abbie's body "goes off" at 9pm each night. She goes from breathing normally to needing 3 or 4 liters of oxygen within minutes, and continues this for about 2 hours. This is related to her "Triple Warmer" meridian, which is the first cycle we really noted her experience back in February. It seems that her body goes through cycles in most of the meridians and then circles back to the beginning again, perhaps to begin another round of deeper healing. Who knows? That is just my guess.
My mom, who we expected to be here through the end of July, had to leave yesterday to tend to my father who is enough under the weather that his doctor told him not to come to Hawaii this Friday as planned. Please pray that he would recover quickly! We had three other houseguests (Linda & Adrienne Carver, and Brittany Currie) depart yesterday as well...so if you are in Los Alamos there are a lot of hugs on the way via Linda!! Our house is feeling oversized and quiet tonight!
Abbie lost yet another tooth last night...one of what I called her "pirate smile teeth", her oversized canines that were a bit dracula-like. Whenever I saw them in her smile, I knew she was up to no good, she was being my pirate princess. She's thrilled about racking up more Tooth Fairy Treasure, but I have mixed feeling about seeing another bit of my old Abbie transition away from me. The sadness only flickers briefly however, because she is so happy these days, and her big girl, or rather old-almost-toothless-lady smile brightens my day too much to gaze in the rear view mirror for very long.
On Tuesday, July 17th, Jim's 39th birthday, there was a celebration service at the same spot where Jim and Remle were wed over ten years ago. Under palms swaying in the breeze, overlooking Jim's beloved ocean, I saw the glory of God made manifest more radiantly than I have ever witnessed with my eyes. My precious friend, now a young widow and single parent, glowed in her white dress and haku lei. Not only did she summon the strength to welcome each of us with a smile and hug, but she danced in praise of the God she is depending on to "never let go"...as she raised her arms and face to heaven during her hula, I observed the truest worship I have ever seen, that which flows from a broken but trusting heart.
True strength is not always brutish power covered in armor and sweat, sometimes true strength is noble grace, clothed in white and ornamented with flowers. Rem, if you are reading this I am exquisitely blessed to call you sister and friend, and am so terribly proud of you.
Abbie is well, and in the midst of another cycle of healing. Like an alarm clock, complete with bell ringing, Abbie's body "goes off" at 9pm each night. She goes from breathing normally to needing 3 or 4 liters of oxygen within minutes, and continues this for about 2 hours. This is related to her "Triple Warmer" meridian, which is the first cycle we really noted her experience back in February. It seems that her body goes through cycles in most of the meridians and then circles back to the beginning again, perhaps to begin another round of deeper healing. Who knows? That is just my guess.
My mom, who we expected to be here through the end of July, had to leave yesterday to tend to my father who is enough under the weather that his doctor told him not to come to Hawaii this Friday as planned. Please pray that he would recover quickly! We had three other houseguests (Linda & Adrienne Carver, and Brittany Currie) depart yesterday as well...so if you are in Los Alamos there are a lot of hugs on the way via Linda!! Our house is feeling oversized and quiet tonight!
Abbie lost yet another tooth last night...one of what I called her "pirate smile teeth", her oversized canines that were a bit dracula-like. Whenever I saw them in her smile, I knew she was up to no good, she was being my pirate princess. She's thrilled about racking up more Tooth Fairy Treasure, but I have mixed feeling about seeing another bit of my old Abbie transition away from me. The sadness only flickers briefly however, because she is so happy these days, and her big girl, or rather old-almost-toothless-lady smile brightens my day too much to gaze in the rear view mirror for very long.
Sunday, July 15, 2007
Assessment Whirwind
We had four straight days of assessments for Abbie this week, and not a second to catch our breath. It was a stressful time for all of us, especially Abbie, who is very aware of when she is being "tested" and wants badly to succeed. This week reconfirmed that my life verse is becoming, "None of these things shall move me."
We started out with the school PT visiting us on Tuesday, while the school OT, special services coordinator and our home school principal came to the house on Wednesday. Thursday took us to the hospital for a swallow test, and PT/OT. We returned home to immediately meet with two teachers. Friday we had Abbie's program at the University, which the school speech therapist observed.
It was exhausting to educate, educate, educate and answer questions all week. But, Thursday afternoon brought a conversation that I will long remember. One of the teachers saw Abbie, truly saw her. She took many words out of my weary mouth as she turned to the other teacher and said,
"Abbie is not like any of the other kids we have ever worked with. She is not mentally retarded, she is just motor-challenged. Her desire to eavesdrop on conversation, her ability to respond to conversations both directed to her and those about her indicate a very high cognitive level. We must take care how we talk about her and around her." I was already stunned, but then she continued, "We have got to give her time to respond, without interrupting with additional prompting or encouragement. So often we dismiss kids' potential when all they need is additional time." Yes, yes yes!!
After I had described Abbie's two switch communication system, the teacher brought up Stephen Hawking -- a man whose brilliance is only shared because of a communication system. She likened Abbie to him in that they are both intact minds trapped in bodies that do not allow free expression. I could not believe what I was hearing! She asked me if I'd ever been accused of reading more into Abbie's actions or abilities than was truly there. I responded that I try to be very cautious about that, always wanting to get validation from a therapist or other observer. She told me that I shouldn't worry about that because I was able to give several concrete examples for every capability of Abbie's that I described. That was encouraging to hear.
I smiled while closing the door behind them. For the first time in three years, someone SAW Abbie, without me being the stage mother, describing her in detail. What a victory for her!!
The swallow test on Thursday was a little less victorious. It turned out about as I'd suspected. Abbie wants to swallow, responds quickly when something is placed in her mouth, and tries valiantly...but, her body is not quite working for her yet. Her tongue goes up and down very well, but we need more back and forth motion. Her challenge right now is moving food from the front of her mouth to the back, so her swallow is delayed. By the time she can swallow, much saliva has seeped down the back of her throat and into her trachea. As I told Abbie, she just needs a little more swallowing practice. Her speech therapists told me not to be too discouraged by the results, and that overall she is doing very well. They thought "needs more practice" was a good summation. Please just pray for "forward and back, forward and back" movement.
I have had much fun with Abbie this week, who is in a truly great mood most of the time. She has relished her new game of "kick ball", where while sitting in her chair she asks for the ball with her switch and then kicks it away with her feet. We've gotten more than our quota of smiles and dimples, and overall life is very good.
But...I do pray that none of these things shall move me...negative test results shall not move me to despair, positive test results shall not move me to complacency; defeat shall not move me to concession, victory shall not move me to self-reliance.
Have a blessed week!
We started out with the school PT visiting us on Tuesday, while the school OT, special services coordinator and our home school principal came to the house on Wednesday. Thursday took us to the hospital for a swallow test, and PT/OT. We returned home to immediately meet with two teachers. Friday we had Abbie's program at the University, which the school speech therapist observed.
It was exhausting to educate, educate, educate and answer questions all week. But, Thursday afternoon brought a conversation that I will long remember. One of the teachers saw Abbie, truly saw her. She took many words out of my weary mouth as she turned to the other teacher and said,
"Abbie is not like any of the other kids we have ever worked with. She is not mentally retarded, she is just motor-challenged. Her desire to eavesdrop on conversation, her ability to respond to conversations both directed to her and those about her indicate a very high cognitive level. We must take care how we talk about her and around her." I was already stunned, but then she continued, "We have got to give her time to respond, without interrupting with additional prompting or encouragement. So often we dismiss kids' potential when all they need is additional time." Yes, yes yes!!
After I had described Abbie's two switch communication system, the teacher brought up Stephen Hawking -- a man whose brilliance is only shared because of a communication system. She likened Abbie to him in that they are both intact minds trapped in bodies that do not allow free expression. I could not believe what I was hearing! She asked me if I'd ever been accused of reading more into Abbie's actions or abilities than was truly there. I responded that I try to be very cautious about that, always wanting to get validation from a therapist or other observer. She told me that I shouldn't worry about that because I was able to give several concrete examples for every capability of Abbie's that I described. That was encouraging to hear.
I smiled while closing the door behind them. For the first time in three years, someone SAW Abbie, without me being the stage mother, describing her in detail. What a victory for her!!
The swallow test on Thursday was a little less victorious. It turned out about as I'd suspected. Abbie wants to swallow, responds quickly when something is placed in her mouth, and tries valiantly...but, her body is not quite working for her yet. Her tongue goes up and down very well, but we need more back and forth motion. Her challenge right now is moving food from the front of her mouth to the back, so her swallow is delayed. By the time she can swallow, much saliva has seeped down the back of her throat and into her trachea. As I told Abbie, she just needs a little more swallowing practice. Her speech therapists told me not to be too discouraged by the results, and that overall she is doing very well. They thought "needs more practice" was a good summation. Please just pray for "forward and back, forward and back" movement.
I have had much fun with Abbie this week, who is in a truly great mood most of the time. She has relished her new game of "kick ball", where while sitting in her chair she asks for the ball with her switch and then kicks it away with her feet. We've gotten more than our quota of smiles and dimples, and overall life is very good.
But...I do pray that none of these things shall move me...negative test results shall not move me to despair, positive test results shall not move me to complacency; defeat shall not move me to concession, victory shall not move me to self-reliance.
Have a blessed week!
Monday, July 02, 2007
Sunshine
Friday came, full of cheer, and washed away the darkness in my heart. Fridays are a favorite day because they are Abbie's "school day" during the summer. Perhaps because I'd been in such a deep hole, Abbie's light seemed especially brilliant that morning.
The sun shone brightly as we headed out to "the beach" -- an activity center set up outside that includes digging in sand. I love so much that the students create playful learning experiences. Abbie dug through the sand to find shapes which she would then identify for us. She did great at the circles, but then also called a square a circle. I compared the square and circle and we talked about corners and edges, and then we tried again. This time she identified both of the squares. I got to watch her learn!! And, she picked it up quite quickly.
Then, we were on to her favorite...the ball pit. I sit in it with her and we use the balls to practice identifying colors. She was as fast as I have ever seen her, even when we tried to trick her. These kind of days are so sweet for me...it feels good to smile. We then got to throw water balloons, which unfortunately were ultra-strong and bounced like balls...but Abbie used a gripper hand to do it herself. Again, the students finding a way to allow Abbie to do as much herself as possible. She loved the gripper, and also used it to do her hall moniter duty picking up trash and moving activity cards to the "completed" side of the chart.
But, the best part of the day happened when I was not there (of course). I had run up the hill to pick up the twins from their summer program and missed about 30 minutes of activity. During this time they introduced the "feeling box" to Abbie, which contained shapes she could pick up but not look at. She was not at all keen to put her hand into a box of unknowns, which I can understand. However, they would place shapes in her hand and she could correctly identify the shape just based on how it felt in her hand. By this I was truly amazed...I had no idea she was capable of this!
We are still having difficult afternoons. Between 3 and 5 pm Abbie is generally unhappy, with prolonged bouts of crying/whining common. Because it keeps happening at the same time, and resolving at the same time it has all the markings of a meridian-related pattern. The encouraging news is that between these hours the bladder meridian is in high phase, and the brain lies on this circuit. So, while it still pains my heart deeply to hear and watch her suffer, I am profoundly comforted by the belief that this is a sign of healing and progress for her.
Tonight I told her that she has a swallowing test on July 12th, and that we need to practice. I got an immediate reaction, a huge smile and some great swallows. She is all about acing tests. I mentioned that we also have a "body test" on July 30 (a visit to the orthopedic surgeon at Shriner's), so that we need to practice having loose, stretchy muscles, and a strong body...we'll see if the Teacher's Pet part of Abbie helps us in this instance!
My mom arrived on Wednesday to spend a month with us. It will be a treat to have another set of hands, which so far have been kept quite busy by the boys...playing cribbage and cards!
Please continue to pray for our school decision. The principal of our home school wants to meet with us before we even start the process, which is curious but will give me a chance to ask some key questions. Several families have mentioned that they are not even allowed on campus during the school day, including when their children are receiving therapy. If I cannot be present to work with and learn from the therapists, this process isn't even worth starting.
As I close, I am looking at Abbie, and her beauty leaves me wordless. I am so very, very blessed!
The sun shone brightly as we headed out to "the beach" -- an activity center set up outside that includes digging in sand. I love so much that the students create playful learning experiences. Abbie dug through the sand to find shapes which she would then identify for us. She did great at the circles, but then also called a square a circle. I compared the square and circle and we talked about corners and edges, and then we tried again. This time she identified both of the squares. I got to watch her learn!! And, she picked it up quite quickly.
Then, we were on to her favorite...the ball pit. I sit in it with her and we use the balls to practice identifying colors. She was as fast as I have ever seen her, even when we tried to trick her. These kind of days are so sweet for me...it feels good to smile. We then got to throw water balloons, which unfortunately were ultra-strong and bounced like balls...but Abbie used a gripper hand to do it herself. Again, the students finding a way to allow Abbie to do as much herself as possible. She loved the gripper, and also used it to do her hall moniter duty picking up trash and moving activity cards to the "completed" side of the chart.
But, the best part of the day happened when I was not there (of course). I had run up the hill to pick up the twins from their summer program and missed about 30 minutes of activity. During this time they introduced the "feeling box" to Abbie, which contained shapes she could pick up but not look at. She was not at all keen to put her hand into a box of unknowns, which I can understand. However, they would place shapes in her hand and she could correctly identify the shape just based on how it felt in her hand. By this I was truly amazed...I had no idea she was capable of this!
We are still having difficult afternoons. Between 3 and 5 pm Abbie is generally unhappy, with prolonged bouts of crying/whining common. Because it keeps happening at the same time, and resolving at the same time it has all the markings of a meridian-related pattern. The encouraging news is that between these hours the bladder meridian is in high phase, and the brain lies on this circuit. So, while it still pains my heart deeply to hear and watch her suffer, I am profoundly comforted by the belief that this is a sign of healing and progress for her.
Tonight I told her that she has a swallowing test on July 12th, and that we need to practice. I got an immediate reaction, a huge smile and some great swallows. She is all about acing tests. I mentioned that we also have a "body test" on July 30 (a visit to the orthopedic surgeon at Shriner's), so that we need to practice having loose, stretchy muscles, and a strong body...we'll see if the Teacher's Pet part of Abbie helps us in this instance!
My mom arrived on Wednesday to spend a month with us. It will be a treat to have another set of hands, which so far have been kept quite busy by the boys...playing cribbage and cards!
Please continue to pray for our school decision. The principal of our home school wants to meet with us before we even start the process, which is curious but will give me a chance to ask some key questions. Several families have mentioned that they are not even allowed on campus during the school day, including when their children are receiving therapy. If I cannot be present to work with and learn from the therapists, this process isn't even worth starting.
As I close, I am looking at Abbie, and her beauty leaves me wordless. I am so very, very blessed!
Wednesday, June 27, 2007
Unvarnished
To be honest, lapses in posts lately occur not when I have nothing to say, but rather when I either don't know how to say it, or don't want to say it. I was talking with a friend, who is also going through a challenging time that she is sharing via a blog, and she laughed as she said, "This blog thing has gotten totally out of hand..." I questioned what she meant, and she answered that so many people now think that parts of her life, herself, her family are "the epitome" or a fairy tale. I smiled a knowing smile. If you could only know how many times I nap because I can't face what is in the other room, how many times I simply don't do what I know to do because I am lazy, or sad, or on the verge of quitting.
These past two weeks have added a new facet to our journey..Abbie visibly, and audibly suffering. I think most of it has been tummy upset, so we've changed her diet temporarily. Until a few days ago she'd been subsisting mostly on chicken broth and supplements. We're working milk and food back into her diet now, and it seems to be going OK. But, watching her actively suffer brought a new level of pain to our hearts, and new questions to our mind.
My first instinct is to skirt these questions, not wanting to put them in print. But, to be true to the title of this posting, I'll touch generally on them. Tears flowed as we wondered aloud, for the first time together, whether still being here is the best thing for Abbie. Our hearts' desire is for Abbie's best, and we wondered whether we are being selfish in desiring so strongly for that "best" to be manifested here. Listening to her cry in pain, we wondered if an immediate release, on the day of her accident, would not have have been better, more compassionate, easier. I am so profoundly grateful for all the past three years have given us: finding out she has her Daddy's curly hair, seeing the unshakeable love of her brothers, watching her persevere with smiles and dimples, and much, much more. What I rest on is that just as God has given special grace to Ray and I to walk through this season, a grace that I cannot explain to those who've not yet had to rely on it, God is giving Abbie a special grace that even I cannot comprehend. For me, this is a new level of trust in Him -- it's much easier to trust Him with my own suffering than it is with my daughter's. But, after an agonizing weekend, I find myself in this new, deeper place with confidence settled well into my soul. I cannot always hold her, soothe her, help her...but He can.
Part of the painful series of conversations led us to the conclusion that it would be good for Abbie to go to school this fall, if we can get her into the right school. There is one near our home that would be terrific for her, but it is not in our home district. She was very excited about the prospect of going to school when I mentioned it to her on Monday. On Tuesday, she was agitated around lunch time. I took a guess, and was right...I said, "Oh, Abbie, I didn't mean school would start today, it will start in the Fall, after you are six. But we can still go to school on Fridays during the summer." This thrilled her and ended the fit. Please pray for favor in this area -- we did not have a good experience in our first go 'round with the Dept of Ed., and really want a different outcome this time.
This has been a week of sadness all around us -- funerals, dying, despair...we are pressed but not crushed, persecuted not abandoned, struck down but not destroyed...I will never be able to express my gratitude for the hands that carry us when our own feeble strength fails.
These past two weeks have added a new facet to our journey..Abbie visibly, and audibly suffering. I think most of it has been tummy upset, so we've changed her diet temporarily. Until a few days ago she'd been subsisting mostly on chicken broth and supplements. We're working milk and food back into her diet now, and it seems to be going OK. But, watching her actively suffer brought a new level of pain to our hearts, and new questions to our mind.
My first instinct is to skirt these questions, not wanting to put them in print. But, to be true to the title of this posting, I'll touch generally on them. Tears flowed as we wondered aloud, for the first time together, whether still being here is the best thing for Abbie. Our hearts' desire is for Abbie's best, and we wondered whether we are being selfish in desiring so strongly for that "best" to be manifested here. Listening to her cry in pain, we wondered if an immediate release, on the day of her accident, would not have have been better, more compassionate, easier. I am so profoundly grateful for all the past three years have given us: finding out she has her Daddy's curly hair, seeing the unshakeable love of her brothers, watching her persevere with smiles and dimples, and much, much more. What I rest on is that just as God has given special grace to Ray and I to walk through this season, a grace that I cannot explain to those who've not yet had to rely on it, God is giving Abbie a special grace that even I cannot comprehend. For me, this is a new level of trust in Him -- it's much easier to trust Him with my own suffering than it is with my daughter's. But, after an agonizing weekend, I find myself in this new, deeper place with confidence settled well into my soul. I cannot always hold her, soothe her, help her...but He can.
Part of the painful series of conversations led us to the conclusion that it would be good for Abbie to go to school this fall, if we can get her into the right school. There is one near our home that would be terrific for her, but it is not in our home district. She was very excited about the prospect of going to school when I mentioned it to her on Monday. On Tuesday, she was agitated around lunch time. I took a guess, and was right...I said, "Oh, Abbie, I didn't mean school would start today, it will start in the Fall, after you are six. But we can still go to school on Fridays during the summer." This thrilled her and ended the fit. Please pray for favor in this area -- we did not have a good experience in our first go 'round with the Dept of Ed., and really want a different outcome this time.
This has been a week of sadness all around us -- funerals, dying, despair...we are pressed but not crushed, persecuted not abandoned, struck down but not destroyed...I will never be able to express my gratitude for the hands that carry us when our own feeble strength fails.
Blessed is the man who trusts the LORD
and whose trust is the LORD,
For he will be like a tree planted by the water,
That extends its roots by a stream,
And will not fear when the heat comes
But its leaves will be green
And it will not be anxious in a year of drought,
Nor cease to yield fruit.
-- Jeremiah 17:7-8
Wednesday, June 20, 2007
Check-up
A nice, boring trip to the pediatrician yesterday ruled out anything acute that could be contributing to Abbie's current trials. Actually, in many ways she is doing great. Her oxygen needs have been about zero, while staying at 98-99 through the night, her heart rate stays around 90 even when awake, with 130 her new "I'm ticked off" number. 160 used to be the point at which we knew she was mad. She is maintaining her weight, even though she hasn't had her normal diet in almost 2 weeks, and her strength is increasing each day. Go figure. Just makes me think of Daniel and his friends who, trusting and honoring God, grew stronger on vegetables than on the bounty from the king's table.
Dr. L. even got to see Abbie being naughty. As we picked her up off the table to put her in her chair she straightened out her whole body, which elicited groans from us and a huge grin and dimple from her. "Board Baby" is one of her favorite tricks, and we all all laughed at her amusement, and the show of her personality. However, today when getting her off the potty Debbie warned her that if she did that, she may drop her and then they'd never get to have a sleep over. Limp as a noodle! Debbie said, "Don't tell me that girl doesn't know what she is doing and what she wants!!"
I will be orienting a new nurse tomorrow -- always a little challenging to try to be comprehensive without overwhelming, and to welcome yet another person into our lives without appearing weary.
If you would, please just lift up some specific prayers for Abbie (some are a bit mundane,and some are quite audacious):
-- Femurs to regain normal shape and move back into sockets (that's in the second category)
-- For all the parts of her brain to communicate and work together; for regrowth, reconnection and renewal.
-- For ever decreasing muscle tone and increasing strength.
-- For her to always know how absolutely she is loved and cherished, and for there to be joy in every day for her.
And, speaking of prayers for little girls, could I ask you to also pray for Abbie's little friend, Mia? She is Jim and Remle's daughter, and is very much a Daddy's girl. Please pray that even at her young age God would grant her supernatural grace and comfort as she faces the possibility of her Daddy going to Heaven soon. Pray that she will sense God's protection and refuge in a palpable way as she loses the most tangible provision of these in her life. I guess, as a mommy, I just don't want her heart to break, but as a child of God I know He is very good at keeping all the pieces and making something wonderful and new with them.
Dr. L. even got to see Abbie being naughty. As we picked her up off the table to put her in her chair she straightened out her whole body, which elicited groans from us and a huge grin and dimple from her. "Board Baby" is one of her favorite tricks, and we all all laughed at her amusement, and the show of her personality. However, today when getting her off the potty Debbie warned her that if she did that, she may drop her and then they'd never get to have a sleep over. Limp as a noodle! Debbie said, "Don't tell me that girl doesn't know what she is doing and what she wants!!"
I will be orienting a new nurse tomorrow -- always a little challenging to try to be comprehensive without overwhelming, and to welcome yet another person into our lives without appearing weary.
If you would, please just lift up some specific prayers for Abbie (some are a bit mundane,and some are quite audacious):
-- Femurs to regain normal shape and move back into sockets (that's in the second category)
-- For all the parts of her brain to communicate and work together; for regrowth, reconnection and renewal.
-- For ever decreasing muscle tone and increasing strength.
-- For her to always know how absolutely she is loved and cherished, and for there to be joy in every day for her.
And, speaking of prayers for little girls, could I ask you to also pray for Abbie's little friend, Mia? She is Jim and Remle's daughter, and is very much a Daddy's girl. Please pray that even at her young age God would grant her supernatural grace and comfort as she faces the possibility of her Daddy going to Heaven soon. Pray that she will sense God's protection and refuge in a palpable way as she loses the most tangible provision of these in her life. I guess, as a mommy, I just don't want her heart to break, but as a child of God I know He is very good at keeping all the pieces and making something wonderful and new with them.
Monday, June 18, 2007
Ocean Girl
This update truly deserves an accompanying photo, but I can't find the wire to download my pictures. So, I will try to paint the scene as well as I can. On Saturday Abbie and I were out on the ocean together, feeling the swells, the spray and the wind. She was giving commentary as I wept. We were riding in an outrigger canoe paddled by five strong men whom I'd not met before that morning. Sometimes the sweetest gifts come from strangers. We watched a kite surfer, we talked about the island we paddled near, we watched surfers paddling out to the big waves...Abbie doesn't have the chance to do many fun things just for the fun of it, with no therapeutic angle in mind. This was a rare and precious time for us, and without thinking about therapy, I think the ocean provided some of the deepest renewal we've had.
Pure Light is a non-profit organization that grew out of a ministry whose goal is to get special needs people out on the water. There was another man in a wheelchair, Kyle, who is a regular. His angel of a mom was well-prepared and let us borrow his seat for Abbie to ride in and his mat for Abbie to change on. There were teenagers there from different schools, as well as folks from the state institution who look forward to this day each month. It is always so overwhelming for me to see the hearts of volunteers who may never truly grasp how deeply they are blessing those they help. It is difficult to describe the special love that is "aloha", but we were filled to the brim with it as we left the beach park. To see Abbie's hair wet with sea water, sand on her toes, and grins on her face brought smiles to Ray's face, the likes of which I haven't seen in a very long time. You can bet we will be there next month! And, I will post the pictures soon.
As for what else has been going on during this interim between postings: ups, downs and all-arounds. It seems that Abbie is going through another prolonged healing spike. She has not been able to tolerate her normal feedings for over a week now. Her voltage is very high, which is a good thing, it just makes her feel terrible. The new aspect of this spike is her skin turning blotchy for no apparent reason. It resembles her allergic reaction to latex, but it is not. Sometimes it seems to coincide with frustration, emotional hurt or physical pain. At PT on Thursday I was describing her medical history to an intern, and she got all splotchy, even though I was covering her ears as I talked about her initial injury. Yesterday she was in pain most of the day, to the point of being inconsolable for a couple of hours. Hard on our hearts, to say the least. I am taking her to the pediatrician this afternoon to check all potential sources of pain, so that I don't miss something.
In the midst of all this physical turmoil for her, however, she continues to surprise us. She had an assessment at the University on Friday, to meet the grad student who will be working with her this summer. When you have a special needs child "assessment" normally means, "prepare your Kleenex, because your heart is going to be stomped on again." This day was much different, however, as Mindy skipped over questions that obviously didn't apply (many about motor skills), so we ended up focusing on what Abbie can do and what she does understand. Being able to answer "yes" to questions, and talk about capabilities rather than deficits was satisfying and motivating at the same time. The best part of the assessment time, however, was what Abbie did...she sat up for an entire hour, by herself, in between my legs. I would occasionally rub her back, and must admit I did some PT while sitting there, moving her body side-to-side to see if she would keep her head in the right position (she did). But, she was resolute in doing it herself. We used to count the seconds, and then eventually the minutes she could sit up by herself. I am amazed at how strong she is, especially given all she is going through right now!
There's so much more to tell, but honestly my heart is too heavy to write more today. Please pray for my dear friends Jim and Remle, as they enter a new phase of Jim's cancer journey. (www.pray4jim.blogspot.com). They now have home hospice, but please pray mightily for Jim's comfort and pain control. Pray that God would keep them in perfect peace as they keep their minds steadfastly on Him (Is. 26:3). Although we cannot know the mind of God, and I am not sure I could understand what reason would be good enough to take a Daddy away from a beloved son and daughter, and leave a young widow...we can always know His heart. He loves deeply and perfectly and desires the best for us, even when the best is beyond our comprehension.
Pure Light is a non-profit organization that grew out of a ministry whose goal is to get special needs people out on the water. There was another man in a wheelchair, Kyle, who is a regular. His angel of a mom was well-prepared and let us borrow his seat for Abbie to ride in and his mat for Abbie to change on. There were teenagers there from different schools, as well as folks from the state institution who look forward to this day each month. It is always so overwhelming for me to see the hearts of volunteers who may never truly grasp how deeply they are blessing those they help. It is difficult to describe the special love that is "aloha", but we were filled to the brim with it as we left the beach park. To see Abbie's hair wet with sea water, sand on her toes, and grins on her face brought smiles to Ray's face, the likes of which I haven't seen in a very long time. You can bet we will be there next month! And, I will post the pictures soon.
As for what else has been going on during this interim between postings: ups, downs and all-arounds. It seems that Abbie is going through another prolonged healing spike. She has not been able to tolerate her normal feedings for over a week now. Her voltage is very high, which is a good thing, it just makes her feel terrible. The new aspect of this spike is her skin turning blotchy for no apparent reason. It resembles her allergic reaction to latex, but it is not. Sometimes it seems to coincide with frustration, emotional hurt or physical pain. At PT on Thursday I was describing her medical history to an intern, and she got all splotchy, even though I was covering her ears as I talked about her initial injury. Yesterday she was in pain most of the day, to the point of being inconsolable for a couple of hours. Hard on our hearts, to say the least. I am taking her to the pediatrician this afternoon to check all potential sources of pain, so that I don't miss something.
In the midst of all this physical turmoil for her, however, she continues to surprise us. She had an assessment at the University on Friday, to meet the grad student who will be working with her this summer. When you have a special needs child "assessment" normally means, "prepare your Kleenex, because your heart is going to be stomped on again." This day was much different, however, as Mindy skipped over questions that obviously didn't apply (many about motor skills), so we ended up focusing on what Abbie can do and what she does understand. Being able to answer "yes" to questions, and talk about capabilities rather than deficits was satisfying and motivating at the same time. The best part of the assessment time, however, was what Abbie did...she sat up for an entire hour, by herself, in between my legs. I would occasionally rub her back, and must admit I did some PT while sitting there, moving her body side-to-side to see if she would keep her head in the right position (she did). But, she was resolute in doing it herself. We used to count the seconds, and then eventually the minutes she could sit up by herself. I am amazed at how strong she is, especially given all she is going through right now!
There's so much more to tell, but honestly my heart is too heavy to write more today. Please pray for my dear friends Jim and Remle, as they enter a new phase of Jim's cancer journey. (www.pray4jim.blogspot.com). They now have home hospice, but please pray mightily for Jim's comfort and pain control. Pray that God would keep them in perfect peace as they keep their minds steadfastly on Him (Is. 26:3). Although we cannot know the mind of God, and I am not sure I could understand what reason would be good enough to take a Daddy away from a beloved son and daughter, and leave a young widow...we can always know His heart. He loves deeply and perfectly and desires the best for us, even when the best is beyond our comprehension.
Thursday, May 31, 2007
A New Book
Last day of school for the twins and Kyle!! After Kyle's 8th grade graduation tonight we can officially exhale and begin summer. Abbie is ready for summer too, wanting to be outside more and more. Unfortunately, the best time of year for lots of outdoor time has just passed, and now the heat and humidity are making mid-day walks impossible.
I've been anxiously awaiting the chance to make this announcement: Dr. Tennant now has a book available called "Healing Is Voltage". At over 400 pages it is a comprehensive and understandable look at energetic medicine and how voltage (or lack thereof) impacts our bodies. I was blessed to read a draft of it while we were in Dallas, so I can honestly give it a "thumbs up!" Dr. Tennant is very skilled at taking complex scientific principles and boiling them down so that even very unscientfic minds like mine can grasp them. Pre-publication copies are available from his clinic if you call 1-972-580-1156, and ask for Frankie. The cost per copy is $120, and although it may sound like a hefty price, the length, depth, and inclusion of many color photographs and illustrations make this book a worthwhile investment.
Around our house we have been truly enjoying some peaceful nights. Abbie has been sleeping deeply, without the need of oxgyen, which silences that less-than-quiet oxgyen concentrator. I can hear the wind blowing through the trees at night again! Her muscle tone has come back down to the point where she can easily keep her night splints on all night, with her feet pulled up almost to a neutral position instead of a ballerina toe-point. She is also loose enough to get back into the stander again. This had become difficult to do recently because her adductors (muscles on the inside of the thigh) were so tight that it was hard to keep her legs far enough apart to place in the stander.
Why the changes? Who knows exactly...we've been adding ionized (high pH) water to her diet through the generosity of Diana Lim, and a woman in Canada has recently begun doing some energetic work with Abbie which seems to be making an impact. But, for me to think I can untangle the web of progress and follow each strand to a result is a hilarious thought. I gave up thinking I was in control of this a long time ago, and now I'm to the point of admitting I really don't even understand it -- I am just a happy observer and willing participant.
My Bible study today took me to a verse that this journey has made familiar and beloved. As I sit looking out my window at anthuriums blowing in the breeze, framed by layers of green palms I rejoice in the garden He has made for me:
I've been anxiously awaiting the chance to make this announcement: Dr. Tennant now has a book available called "Healing Is Voltage". At over 400 pages it is a comprehensive and understandable look at energetic medicine and how voltage (or lack thereof) impacts our bodies. I was blessed to read a draft of it while we were in Dallas, so I can honestly give it a "thumbs up!" Dr. Tennant is very skilled at taking complex scientific principles and boiling them down so that even very unscientfic minds like mine can grasp them. Pre-publication copies are available from his clinic if you call 1-972-580-1156, and ask for Frankie. The cost per copy is $120, and although it may sound like a hefty price, the length, depth, and inclusion of many color photographs and illustrations make this book a worthwhile investment.
Around our house we have been truly enjoying some peaceful nights. Abbie has been sleeping deeply, without the need of oxgyen, which silences that less-than-quiet oxgyen concentrator. I can hear the wind blowing through the trees at night again! Her muscle tone has come back down to the point where she can easily keep her night splints on all night, with her feet pulled up almost to a neutral position instead of a ballerina toe-point. She is also loose enough to get back into the stander again. This had become difficult to do recently because her adductors (muscles on the inside of the thigh) were so tight that it was hard to keep her legs far enough apart to place in the stander.
Why the changes? Who knows exactly...we've been adding ionized (high pH) water to her diet through the generosity of Diana Lim, and a woman in Canada has recently begun doing some energetic work with Abbie which seems to be making an impact. But, for me to think I can untangle the web of progress and follow each strand to a result is a hilarious thought. I gave up thinking I was in control of this a long time ago, and now I'm to the point of admitting I really don't even understand it -- I am just a happy observer and willing participant.
My Bible study today took me to a verse that this journey has made familiar and beloved. As I sit looking out my window at anthuriums blowing in the breeze, framed by layers of green palms I rejoice in the garden He has made for me:
Isaiah 51:3
Indeed the Lord will comfort Zion;
He will comfort her in her waste places.
And her wilderness He will make like Eden,
And her desert like the garden of the LORD;
Joy and gladness will be found in her,
Thanksgiving and the sound of a melody.
Sunday, May 20, 2007
First off, some housekeeping. I've been letting little steps forward slide by in the midst of end-of-the-year/season activities with the boys. In the last several weeks Abbie has come completely off all digestive support. She used to required digestive enzymes, bile, and betaine with each meal in order in order to keep her milk/egg diet down. Now, she does it all by herself! To me this is a concrete, objective marker that shows her liver function has improved tremendously. Interestingly, she began the enzyme weaning right around when Dr. Tennant told us to expect it (8 weeks after our trip to Dallas). Also interesting is that Jordan, the little boy who was in Dallas when we were, came off his digestive support at the same time as Abbie.
We visted the neurologist a couple weeks back. It was very uneventful, which is always good. Of note to her was the fact that Abbie is now using two switches, which indicates the cognitive ability to understand choices and make clear decisions. I was glad when she agreed that we could cut back a little on Abbie's seizure medicine, Trileptal. As Abbie's digestion has improved it seems that her uptake of the medicine is also more efficient. We had been noticing that it was making her sleepy, which is a new effect for her. So, I am hoping two things: the new lower dose won't interfere with her functioning, and that this decrease is the first of many to come as we look forward to eventually taking her off Trileptal all together!
Now to storytelling time. God has had me in some scary places over the last several days. I think I had to take time to mull them over until He took me to the scariest one of all yesterday...underneath a teenage boy's bed -- yikes! I spent the whole day yesterday deep cleaning the boys' rooms, which gave me time to make peace with God.
This past Saturday we had an outing with the "KAT Club" (kids who use technology to communicate). Kakaako Waterfront park was a beautiful setting to watch the kids play -- digging in a kiddie pool full of Cocoa Puffs to find gummy worms (a highlight for Abbie), blowing bubbles, and even test driving a remote-control power wheel chair that one of the dads created. Abbie and I both liked that one! One of the activities was parachute play -- seating all the kids around a colorful parachute and making it go up and down to bounce a ball around. Who doesn't love that?? I sat Abbie on the ground in front of me so that she could get a good grip on the chute. There was a boy with autism next to us who got so excited that he began twirling around in the middle and landed right on Abbie's legs. The air left my lungs and my face froze as I tried to stifle a yell of surprise and concern. He was not a small boy, and Abbie's bones are fragile. We went on with the day, and I hoped her orthotics has protected her from the full weight of his fall.
Later that evening we took the twins to the UH baseball game, coming home to find an exhausted Abbie sleeping. I thought the day of play had worn her out, but Genevieve told me that she had cried so hard, in such a heart-piercing way, that Genevieve could not even eat her dinner because it was making her heart break. I got sick to my stomach wondering if her legs really had been injured at the park. She was still complaining of discomfort as we got her ready for Sunday School the next day, but there was no way she was going to miss the highlight of her week.
We sat down in the sanctuary a little further back than usual. It was a blessing, so that I didn't later have to feel the eyes of everyone watching me disintegrate. I knew we were in for trouble when the title of the day's message appeared, "Does God Still Heal?" The short answer, is "yes", but my internal screaming at God began as the Pastor recited many instances when Jesus healed because He was moved by compassion. Where in the world is His compassion for Abbie, and how can He withhold it??? Why do we have to worry about broken femurs after a day of play? I know there are all sorts of pious and religious answers to these questions, but they pale in relation to white, hot pain.
I wept during the entire message, and almost broke into sobs as Pastor shared the story of a former president of Columbia Bible College who left that post to care for his wife, ailing with Alzheimers. He spoke of the grief of "missing who she was" and of "not having to care for her, but getting to care for her." It was all so scarily familiar. But, overall, I was just so angry. I told Ray that if I'd had my Bible in my hand I would've thrown it across the room. I've never been in that place with God, and it scared me to my core.
That night I laid awake in bed still angry at God. I felt like a five-year-old child with suitcase packed, headed out the door to leave her miserable, uncaring family behind...until she realizes she doesn't exactly have a Plan B. Defeated she turns around and accepts that no matter how bad it is, "out there" is worse. I realized that no matter how I felt about God at that particular moment, nothing could be as lonely, scary, dangerous, or unsettling as being away from Him. So, much like the little girl, I returned to his grasp full of muttering and complaining, knowing that as a Father he welcomed me anyway. "I'm back...but I still don't like you!!" Now I can almost see Him smile at my upturned nose and pouty mouth.
As I fell asleep an image from Saturday crept in and comforted me. Abbie's outing was at the beach, and as I stood looking at the beauty and enormity of the ocean the thought came to me that while we are standing on the shore it seems that we are somehow able to grasp and contain the vastness of the ocean. We can see the surf as well as the horizon, and with feet planted on the sand the swells at sea seem little more than whitcap decorations of a blue jewel. The experience of the ocean changes dramatically once you place yourself upon it. In its midst you realize your smallness, your vulnerability, your inability to change or control it in any way. It seems to me, the ocean is much like God's love. Not because of the familiar analogy about depth, but rather because as we stand on the edge of God's love it seems so understandable -- "Jesus loves me, this I know, for the Bible tells me so." But we cannot imagine the power, the unfathomableness of His love until we allow ourselves to be swept away into the midst of it.
As I lay on my little boat of a bed, I prayed to become a seaworthy sailor -- one who works with the currents and rides the swells, knowing that although God's love may sometimes feel like a violent gale, His eye is alway on me and His heart is always for me.
We visted the neurologist a couple weeks back. It was very uneventful, which is always good. Of note to her was the fact that Abbie is now using two switches, which indicates the cognitive ability to understand choices and make clear decisions. I was glad when she agreed that we could cut back a little on Abbie's seizure medicine, Trileptal. As Abbie's digestion has improved it seems that her uptake of the medicine is also more efficient. We had been noticing that it was making her sleepy, which is a new effect for her. So, I am hoping two things: the new lower dose won't interfere with her functioning, and that this decrease is the first of many to come as we look forward to eventually taking her off Trileptal all together!
Now to storytelling time. God has had me in some scary places over the last several days. I think I had to take time to mull them over until He took me to the scariest one of all yesterday...underneath a teenage boy's bed -- yikes! I spent the whole day yesterday deep cleaning the boys' rooms, which gave me time to make peace with God.
This past Saturday we had an outing with the "KAT Club" (kids who use technology to communicate). Kakaako Waterfront park was a beautiful setting to watch the kids play -- digging in a kiddie pool full of Cocoa Puffs to find gummy worms (a highlight for Abbie), blowing bubbles, and even test driving a remote-control power wheel chair that one of the dads created. Abbie and I both liked that one! One of the activities was parachute play -- seating all the kids around a colorful parachute and making it go up and down to bounce a ball around. Who doesn't love that?? I sat Abbie on the ground in front of me so that she could get a good grip on the chute. There was a boy with autism next to us who got so excited that he began twirling around in the middle and landed right on Abbie's legs. The air left my lungs and my face froze as I tried to stifle a yell of surprise and concern. He was not a small boy, and Abbie's bones are fragile. We went on with the day, and I hoped her orthotics has protected her from the full weight of his fall.
Later that evening we took the twins to the UH baseball game, coming home to find an exhausted Abbie sleeping. I thought the day of play had worn her out, but Genevieve told me that she had cried so hard, in such a heart-piercing way, that Genevieve could not even eat her dinner because it was making her heart break. I got sick to my stomach wondering if her legs really had been injured at the park. She was still complaining of discomfort as we got her ready for Sunday School the next day, but there was no way she was going to miss the highlight of her week.
We sat down in the sanctuary a little further back than usual. It was a blessing, so that I didn't later have to feel the eyes of everyone watching me disintegrate. I knew we were in for trouble when the title of the day's message appeared, "Does God Still Heal?" The short answer, is "yes", but my internal screaming at God began as the Pastor recited many instances when Jesus healed because He was moved by compassion. Where in the world is His compassion for Abbie, and how can He withhold it??? Why do we have to worry about broken femurs after a day of play? I know there are all sorts of pious and religious answers to these questions, but they pale in relation to white, hot pain.
I wept during the entire message, and almost broke into sobs as Pastor shared the story of a former president of Columbia Bible College who left that post to care for his wife, ailing with Alzheimers. He spoke of the grief of "missing who she was" and of "not having to care for her, but getting to care for her." It was all so scarily familiar. But, overall, I was just so angry. I told Ray that if I'd had my Bible in my hand I would've thrown it across the room. I've never been in that place with God, and it scared me to my core.
That night I laid awake in bed still angry at God. I felt like a five-year-old child with suitcase packed, headed out the door to leave her miserable, uncaring family behind...until she realizes she doesn't exactly have a Plan B. Defeated she turns around and accepts that no matter how bad it is, "out there" is worse. I realized that no matter how I felt about God at that particular moment, nothing could be as lonely, scary, dangerous, or unsettling as being away from Him. So, much like the little girl, I returned to his grasp full of muttering and complaining, knowing that as a Father he welcomed me anyway. "I'm back...but I still don't like you!!" Now I can almost see Him smile at my upturned nose and pouty mouth.
As I fell asleep an image from Saturday crept in and comforted me. Abbie's outing was at the beach, and as I stood looking at the beauty and enormity of the ocean the thought came to me that while we are standing on the shore it seems that we are somehow able to grasp and contain the vastness of the ocean. We can see the surf as well as the horizon, and with feet planted on the sand the swells at sea seem little more than whitcap decorations of a blue jewel. The experience of the ocean changes dramatically once you place yourself upon it. In its midst you realize your smallness, your vulnerability, your inability to change or control it in any way. It seems to me, the ocean is much like God's love. Not because of the familiar analogy about depth, but rather because as we stand on the edge of God's love it seems so understandable -- "Jesus loves me, this I know, for the Bible tells me so." But we cannot imagine the power, the unfathomableness of His love until we allow ourselves to be swept away into the midst of it.
As I lay on my little boat of a bed, I prayed to become a seaworthy sailor -- one who works with the currents and rides the swells, knowing that although God's love may sometimes feel like a violent gale, His eye is alway on me and His heart is always for me.
Wednesday, May 09, 2007
Three Years
Warning: this may be the longest posting I've ever written.
I've been wanting to write this update since last Thursday night, May 3rd. That day marked three years that we've been on this adventure with God. I awoke that morning sure of what I was going to write about -- praises for God's mercy and faithfulness, overflowing hope and unshakeable faith. But a small voice said, "Wait, that is not all that today is about."
We took Abbie to PT at 11 am last Thursday. I was still in "confident conquerer" mode as we left the house, and even as we walked toward the therapy building. But, then it hit me...the smell. That sanitized smell of a hospital that still doesn't cover the scent of grief, pain and despair within the walls. That stomach-sickening smell took me right back to the bewilderment of the very first days in the PICU. I held it together during therapy, even as the session opened with finding out that the authorizations for both PT and OT have lapsed, with not a lot of hope of getting the OT one renewed before June at the earliest. So, now I was dealing with "the smell" and "the system", two things I've grown to truly despise.
Once we got home I must admit there was a solid hour of weeping. The eyes-swollen, wordless weeping that I felt so sure was a past tense in our house. So, then I figured I would write about how the Lord carries us in our weakest moments and never shames us for our grief or broken hearts, even if we feel like we should be "over it." But again, a small voice said, "Wait, this is not all that today is about."
As the minutes ticked by I sat staring at the clock, replaying that time of day during "The Day." I recalled having left-over pizza for lunch, with Abbie sitting on the bar, singing and swinging her heels. I remembered trying, and failing, to get her down for a nap. The pain began to feel palpable, as if it were all going to happen again. I realized that I was sitting in my living room, making a shrine to my pain. The only way to escape that was to leave the house all together.
So, I ended up shopping for things I really didn't need (thank goodness Ross' is cheap), and killing time until I could pick up the boys at three. They were confused about why my eyes were red and teary, even after I reminded them it was "The Day". Their hopeful hearts never waiver, so tears seem less necessary, I suppose.
It was late in the evening, and I was still wondering what the day was really all about. The clocked edged toward midnight, and I recalled standing at Abbie's bedside three years earlier, praying for midnight to come so that if she died, the date on her grave marker wouldn't be the date I was looking at on the hospital bracelet. I don't know why that mattered so much to me then, but my heart cried out and God answered.
Knowing I wasn't anywhere near sleep, I finally pulled out my Bible study workbook, to begin that week's work. At first I was stunned, and then I laughed aloud at the topic for the week: "Binding Up the Brokenhearted." The first sentence on the page read, "We often hear that 'Christ Jesus came into the world to save sinners' (1 Tim 1:15) Do we as often consider that He came to mend broken hearts?"
That's what the day was all about. The binding of our broken hearts! I want to share some of the insights I gained from Beth Moore and God's Word, especially for those who are on this same journey.
I studied four Scripture passages that each shed a unique light on how God binds up the broken hearted. The first is Genesis 16:1-13. This passage finds Hagar, Sarai's servant, out in the wilderness, pregnant and alone. After Sarai gave her to Abraham to concieve a child, she began treating Hagar very harshly, to the point where Hagar was driven to flee. In the wilderness she met "El Roi", the God Who Sees. "Heeding her affliction"(v.11) God made her great promises about her son and descendants (v.10-11). So, I was comforted that our changeless God is still El Roi, He sees my hurt even when I want to hide it or wish it away. But, He also told Hagar to go back and submit herself to Sarai (v.9). In that I see that even in the midst of great trial or grief, right is right. Sometimes, in the midst of a challenging situation people willingly give us a pass on our actions and words, and we often readily accept. What I have learned these past three years is that overwhelming pain can drive us to say or do things that are hurtful. And, words stick whether we truly mean them or not. So, while El Roi sees how deeply we hurt, He still calls us to do (and say) the right thing. I am just so thankful He doesn't expect us to do that in our own strength!
The second passage is Genesis 39:11-23. Joseph is falsely accused by Potiphar's wife and ends up imprisoned. Verse 21 says, "But the LORD was with Joseph and extended kindness to him, and gave him favor in the sight of the chief jailer." If I were Joseph, the favor I'd want would be a "get out of jail free" card, not being esteemed by the chief jailer! Many times God's provision for us does not include pulling us out of a tough situation, at least not right away. I would have been thrilled to have Abbie wake up and eat a popsicle three years ago. That was not God's plan, but I can say fervently that we have experienced His deep and unwavering favor in ways that would not have been possible had we experienced an overnight miracle.
I then turned to the familiar story of Ruth. After Naomi has lost her sons and husband, it is finally time to return to her homeland. She tells her two Gentile daughters-in-law to return to their own families, where at least they will have a hope of once again having a husband. One does reluctantly turn away, but Ruth proclaims in verse 16 "where you go, I will go." Her commitment to Naomi eventually leads to a new life for both of them. Through Ruth I see how often God provides binding up of a broken heart through people. Our family has experienced this every day for three years. Even when we didn't feel like we needed it, even when we wanted not to need it, especially when we needed it too deeply to express...you have been there, applying bandages to our bleeding hearts.
Finally, I went to Samuel 12:15-25 which tells the story of the death of David and Bathsheba's first son, a child conceived through adultery and born into a marriage made possible by murder. (Who says the Bible is boring??) I could relate to David's vigil as his son ailed. I could feel the groaning in his heart. After his son died, David arose to live again and comfort his wife. Verse 24 talks about the birth of their son Solomon, and then says "Now the LORD loved him." I always thought Solomon was the balm that quickly healed their hearts. Wrong. He was actually the fourth son born to David and Bathsheba (1 Chron. 3:5) This tells me that grief takes time, as does healing. Even good things, like healthy sons, cannot hurry the work of binding up a broken heart. I don't think there is such a thing as "getting over it", but I do think time helps us find a way to live in peace with it, through the mercy of God.
In the original language the word for "bind up" is chavash, meaning "to bind on, wrap around, bind as a wound, to bandage, cover, envelope, enclose." That first night in the PICU I only remember saying two things over and over, one of which was "Christ is here." When I wonder about why that came out of my mouth I now think of Isaiah's prophecy, "He has sent me to bind up the brokenhearted." (61:1) Healing our hearts is one of Christ's primary job descriptions, and where there is hurt, there He is also, enveloping us in love and grace that defies understanding or explanation.
So, it has been a terrible, wonderful, scary, exciting, heartbreaking, life-transforming three years. The hard part about receiving a miracle is being in the position to need one. We have been severely humbled at times by the depth our our needs, weaknesses and inadequacies. But, these painful realizations have illuminated more brilliantly the profound love Christ has for us.
In looking for passages about walking I could pray over Abbie, I recently printed out Psalm 116 because not only does it speak about walking, it seems a good summation of Abbie's journey. So, instead of my flailing attempts to put words to the utterances my heart, I will leave you with God's perfect word:
Psalm 116:1-11
I've been wanting to write this update since last Thursday night, May 3rd. That day marked three years that we've been on this adventure with God. I awoke that morning sure of what I was going to write about -- praises for God's mercy and faithfulness, overflowing hope and unshakeable faith. But a small voice said, "Wait, that is not all that today is about."
We took Abbie to PT at 11 am last Thursday. I was still in "confident conquerer" mode as we left the house, and even as we walked toward the therapy building. But, then it hit me...the smell. That sanitized smell of a hospital that still doesn't cover the scent of grief, pain and despair within the walls. That stomach-sickening smell took me right back to the bewilderment of the very first days in the PICU. I held it together during therapy, even as the session opened with finding out that the authorizations for both PT and OT have lapsed, with not a lot of hope of getting the OT one renewed before June at the earliest. So, now I was dealing with "the smell" and "the system", two things I've grown to truly despise.
Once we got home I must admit there was a solid hour of weeping. The eyes-swollen, wordless weeping that I felt so sure was a past tense in our house. So, then I figured I would write about how the Lord carries us in our weakest moments and never shames us for our grief or broken hearts, even if we feel like we should be "over it." But again, a small voice said, "Wait, this is not all that today is about."
As the minutes ticked by I sat staring at the clock, replaying that time of day during "The Day." I recalled having left-over pizza for lunch, with Abbie sitting on the bar, singing and swinging her heels. I remembered trying, and failing, to get her down for a nap. The pain began to feel palpable, as if it were all going to happen again. I realized that I was sitting in my living room, making a shrine to my pain. The only way to escape that was to leave the house all together.
So, I ended up shopping for things I really didn't need (thank goodness Ross' is cheap), and killing time until I could pick up the boys at three. They were confused about why my eyes were red and teary, even after I reminded them it was "The Day". Their hopeful hearts never waiver, so tears seem less necessary, I suppose.
It was late in the evening, and I was still wondering what the day was really all about. The clocked edged toward midnight, and I recalled standing at Abbie's bedside three years earlier, praying for midnight to come so that if she died, the date on her grave marker wouldn't be the date I was looking at on the hospital bracelet. I don't know why that mattered so much to me then, but my heart cried out and God answered.
Knowing I wasn't anywhere near sleep, I finally pulled out my Bible study workbook, to begin that week's work. At first I was stunned, and then I laughed aloud at the topic for the week: "Binding Up the Brokenhearted." The first sentence on the page read, "We often hear that 'Christ Jesus came into the world to save sinners' (1 Tim 1:15) Do we as often consider that He came to mend broken hearts?"
That's what the day was all about. The binding of our broken hearts! I want to share some of the insights I gained from Beth Moore and God's Word, especially for those who are on this same journey.
I studied four Scripture passages that each shed a unique light on how God binds up the broken hearted. The first is Genesis 16:1-13. This passage finds Hagar, Sarai's servant, out in the wilderness, pregnant and alone. After Sarai gave her to Abraham to concieve a child, she began treating Hagar very harshly, to the point where Hagar was driven to flee. In the wilderness she met "El Roi", the God Who Sees. "Heeding her affliction"(v.11) God made her great promises about her son and descendants (v.10-11). So, I was comforted that our changeless God is still El Roi, He sees my hurt even when I want to hide it or wish it away. But, He also told Hagar to go back and submit herself to Sarai (v.9). In that I see that even in the midst of great trial or grief, right is right. Sometimes, in the midst of a challenging situation people willingly give us a pass on our actions and words, and we often readily accept. What I have learned these past three years is that overwhelming pain can drive us to say or do things that are hurtful. And, words stick whether we truly mean them or not. So, while El Roi sees how deeply we hurt, He still calls us to do (and say) the right thing. I am just so thankful He doesn't expect us to do that in our own strength!
The second passage is Genesis 39:11-23. Joseph is falsely accused by Potiphar's wife and ends up imprisoned. Verse 21 says, "But the LORD was with Joseph and extended kindness to him, and gave him favor in the sight of the chief jailer." If I were Joseph, the favor I'd want would be a "get out of jail free" card, not being esteemed by the chief jailer! Many times God's provision for us does not include pulling us out of a tough situation, at least not right away. I would have been thrilled to have Abbie wake up and eat a popsicle three years ago. That was not God's plan, but I can say fervently that we have experienced His deep and unwavering favor in ways that would not have been possible had we experienced an overnight miracle.
I then turned to the familiar story of Ruth. After Naomi has lost her sons and husband, it is finally time to return to her homeland. She tells her two Gentile daughters-in-law to return to their own families, where at least they will have a hope of once again having a husband. One does reluctantly turn away, but Ruth proclaims in verse 16 "where you go, I will go." Her commitment to Naomi eventually leads to a new life for both of them. Through Ruth I see how often God provides binding up of a broken heart through people. Our family has experienced this every day for three years. Even when we didn't feel like we needed it, even when we wanted not to need it, especially when we needed it too deeply to express...you have been there, applying bandages to our bleeding hearts.
Finally, I went to Samuel 12:15-25 which tells the story of the death of David and Bathsheba's first son, a child conceived through adultery and born into a marriage made possible by murder. (Who says the Bible is boring??) I could relate to David's vigil as his son ailed. I could feel the groaning in his heart. After his son died, David arose to live again and comfort his wife. Verse 24 talks about the birth of their son Solomon, and then says "Now the LORD loved him." I always thought Solomon was the balm that quickly healed their hearts. Wrong. He was actually the fourth son born to David and Bathsheba (1 Chron. 3:5) This tells me that grief takes time, as does healing. Even good things, like healthy sons, cannot hurry the work of binding up a broken heart. I don't think there is such a thing as "getting over it", but I do think time helps us find a way to live in peace with it, through the mercy of God.
In the original language the word for "bind up" is chavash, meaning "to bind on, wrap around, bind as a wound, to bandage, cover, envelope, enclose." That first night in the PICU I only remember saying two things over and over, one of which was "Christ is here." When I wonder about why that came out of my mouth I now think of Isaiah's prophecy, "He has sent me to bind up the brokenhearted." (61:1) Healing our hearts is one of Christ's primary job descriptions, and where there is hurt, there He is also, enveloping us in love and grace that defies understanding or explanation.
So, it has been a terrible, wonderful, scary, exciting, heartbreaking, life-transforming three years. The hard part about receiving a miracle is being in the position to need one. We have been severely humbled at times by the depth our our needs, weaknesses and inadequacies. But, these painful realizations have illuminated more brilliantly the profound love Christ has for us.
In looking for passages about walking I could pray over Abbie, I recently printed out Psalm 116 because not only does it speak about walking, it seems a good summation of Abbie's journey. So, instead of my flailing attempts to put words to the utterances my heart, I will leave you with God's perfect word:
Psalm 116:1-11
I love the LORD, because He hears
My voice and my supplications.
Because He has inclined His ear to me,
Therefore I shall call upon Him as long as I live.
The cords of death encompassed me
And the terrors of Sheol came upon me;
I found distress and sorrow.
Then I called upon the name of the LORD:
"O LORD, I beseech You, save my life!"
Gracious is the LORD, and righteous;
Yes, our God is compassionate.
The LORD preserves the simple;
I was brought low, and He saved me.
Return to your rest, O my soul
For the LORD has dealt
bountifully with you.
For You have rescued my soul from death,
My eyes from tears,
My feet from stumbling.
I shall walk before the LORD
In the land of the living.
I believed when I said,
"I am greatly afflicted."
I said in my alarm,
"All men are liars."
Thursday, April 26, 2007
Perservering Kindness
Things are moving along with Abbie...I still don't have a great understanding of what we are watching unfold, but she is forging ahead despite that. It helps that we have such great companions. Pam Wilson is the grandmother of Jordan, a near-drowning survivor in Tennessee. Jordan and his mom Jeannie were at Dr. Tennant's clinic in Dallas when we were in January. Pam called today and said, "I really need to compare notes!" I asked, "Really high muscle tone, still needing suppositories?" "Yes, and yes" were her answers. Not only that, but Jordan and Abbie's voltage readings are very similar, and we are seeing shifts in the same sequences at nearly the same times. So, to me this means that we are observing a pattern of healing. Jordan was injured much more recently than Abbie, and when we saw them in January he hadn't progressed quite as far into his recovery yet. But, here they are having vision gains, doing new things, struggling with similar challenges, and having voltage measurments that are incredibly in synch. This tells me two things: it doesn't matter where the starting point is, and and doesn't matter how long it has been since the injury. The recovery pattern seems indifferent to both of these variables, which brings great hope!
Speaking of Jordan, I would like to ask each of you to help "Make Room for Jordan"...his family is pretty far through the process of "Extreme Home Makeover" selection. One key factor is a petition, signed by as many people as possible, encouraging ABC to choose them. They have over 18,000 signatures so far, but would like to present 30,000 to the network. Please go to www.prayersforJordan.blogspot.com and look for the "Make Room for Jordan" link on the right side. He has an incredible, loving family. But, there are currently 3 adults and 5 children living in a 3 bedroom, 1.5 bath house, which is tight even before adding in all his equipment and supplies. I cannot think of a more deserving family, so I pray that you will make the time to add your name and your prayers.
The theme of this past week for me has boiled down to two words, "How's Abbie?" Everywhere I go, whether among strangers or old friends, I have answered that question more this week than in a long time. I went for some medical tests last Thursday, and the technician, Doreen, asked that before anything else. I'd never met her, but she said she and her coworkers follow Abbie's progress via this blog. We spent this weekend at Ihilani, a wonderful hotel, where Ray had a work retreat. I cannot count the times I was asked that question...in the elevator, in the buffet line, at the pool. Yesterday I went to an ICU to be with our precious friend, John, whose father is fighting cancer. John has coached the twins' baseball teams for years, and his dad was often at the games. I arrived to find his father sitting up in bed, but needing lots of oxygen through his mask. John said, "This is RJ's mom..you know RJ, the scrappy one." That made me smile, but what his dad said made me cry. From behind his mask he said, "Yea, yea I know RJ...How's your daughter? She's your youngest, right?" Here is this man fighting for his life, in great discomfort and stress, and the first thing he asks me about is Abbie?? This care, this kindness is so mind-blowing to me because it is perservering kindness. It has been almost three years now and people are still asking, people are still praying. It's very human to be kind and caring in a moment of crisis, it is divine to be kind and caring years later. We are so abundantly blessed because of you!
After my women's Bible study today one of the ladies shared a story with me while we stood by our cars. She spoke of an old friend whose daughter, Elizabeth, had nearly drowned at age three. It cost this woman her marriage, custody of Elizabeth, and many years of pain. She told me how this mom eventually got her daughter back and felt she saw many miracles in the 25 years Elizabeth lived after her accident, even though she never recovered beyond tracking with her eyes and making utterances. I could relate to seeing the blessing in all that, but honestly, on the drive home it made me cry out to God. "Please, Lord, if that is your plan for Abbie, would you tell me. I'm not asking when you will heal her, or even if you will...but if you are not going to heal her before Heaven, we will still rejoice in her miracles, treasure having her here and walk every step of this leaning on You...but could you prepare me for that?" I guess I prayed about this for twenty minutes or so before I was clearly impressed that the answer I was seeking would be found in the Scriptures.
As I arrived at school to pick up the kids, I pulled out my Bible study workbook, figuring I could use my waiting time to work on my memory verse for next week. As I opened to the right page, my heart started beating fast, and then I read the verse, knowing it was the answer. I am so thankful that God doesn't expect us to be brave all the time, to walk without ever fainting or doubting, and that when I cried out to Him for reassurance He so quickly answered.
He gave me Isaiah 61:4:
"They will rebuild the ancient ruins,
and restore the places long devastated;
they will renew the ruined cities
that have been devastated for generations."
Speaking of Jordan, I would like to ask each of you to help "Make Room for Jordan"...his family is pretty far through the process of "Extreme Home Makeover" selection. One key factor is a petition, signed by as many people as possible, encouraging ABC to choose them. They have over 18,000 signatures so far, but would like to present 30,000 to the network. Please go to www.prayersforJordan.blogspot.com and look for the "Make Room for Jordan" link on the right side. He has an incredible, loving family. But, there are currently 3 adults and 5 children living in a 3 bedroom, 1.5 bath house, which is tight even before adding in all his equipment and supplies. I cannot think of a more deserving family, so I pray that you will make the time to add your name and your prayers.
The theme of this past week for me has boiled down to two words, "How's Abbie?" Everywhere I go, whether among strangers or old friends, I have answered that question more this week than in a long time. I went for some medical tests last Thursday, and the technician, Doreen, asked that before anything else. I'd never met her, but she said she and her coworkers follow Abbie's progress via this blog. We spent this weekend at Ihilani, a wonderful hotel, where Ray had a work retreat. I cannot count the times I was asked that question...in the elevator, in the buffet line, at the pool. Yesterday I went to an ICU to be with our precious friend, John, whose father is fighting cancer. John has coached the twins' baseball teams for years, and his dad was often at the games. I arrived to find his father sitting up in bed, but needing lots of oxygen through his mask. John said, "This is RJ's mom..you know RJ, the scrappy one." That made me smile, but what his dad said made me cry. From behind his mask he said, "Yea, yea I know RJ...How's your daughter? She's your youngest, right?" Here is this man fighting for his life, in great discomfort and stress, and the first thing he asks me about is Abbie?? This care, this kindness is so mind-blowing to me because it is perservering kindness. It has been almost three years now and people are still asking, people are still praying. It's very human to be kind and caring in a moment of crisis, it is divine to be kind and caring years later. We are so abundantly blessed because of you!
After my women's Bible study today one of the ladies shared a story with me while we stood by our cars. She spoke of an old friend whose daughter, Elizabeth, had nearly drowned at age three. It cost this woman her marriage, custody of Elizabeth, and many years of pain. She told me how this mom eventually got her daughter back and felt she saw many miracles in the 25 years Elizabeth lived after her accident, even though she never recovered beyond tracking with her eyes and making utterances. I could relate to seeing the blessing in all that, but honestly, on the drive home it made me cry out to God. "Please, Lord, if that is your plan for Abbie, would you tell me. I'm not asking when you will heal her, or even if you will...but if you are not going to heal her before Heaven, we will still rejoice in her miracles, treasure having her here and walk every step of this leaning on You...but could you prepare me for that?" I guess I prayed about this for twenty minutes or so before I was clearly impressed that the answer I was seeking would be found in the Scriptures.
As I arrived at school to pick up the kids, I pulled out my Bible study workbook, figuring I could use my waiting time to work on my memory verse for next week. As I opened to the right page, my heart started beating fast, and then I read the verse, knowing it was the answer. I am so thankful that God doesn't expect us to be brave all the time, to walk without ever fainting or doubting, and that when I cried out to Him for reassurance He so quickly answered.
He gave me Isaiah 61:4:
"They will rebuild the ancient ruins,
and restore the places long devastated;
they will renew the ruined cities
that have been devastated for generations."
Wednesday, April 18, 2007
And Then One Day...
Recently my Uncle Tim and Aunt Lois spent a few days with us, and during this time Lois made a comment about how sometimes it seems that things aren't changing, nothing is happening, "and then one day" things are different. I look forward to many "one days" in Abbie's near future, and this weekend I got a taste of the joy they will bring.
I have been giving Abbie tastes of food for a long time, but we haven't really been working hard on oral eating for a while. I go through phases with that -- putting a lot of effort into it, seeing minimal progress, then stepping down for a while. This past Saturday I was using baby food carrots just to give her tastes of food with a tongue depressor. After a few minutes I noticed that we were actually going through some food. She was confidently swallowing, and if I helped support her lower lip just a bit, these swallows were very effective. By the end of the day, Abbie had eaten three ounces of food. That may not be much for a voracious toddler, but for a girl who hasn't eaten that much in over two years (since she was decannulated) this was a huge step -- one that she didn't really build up to, but rather just accomplished out of the blue..."and then one day"
That day was a great day for eating because she was very clear, and breathing easily. That hasn't been the story for this week. She's been kind of junky, with more secretions, which makes eating difficult. But, that doesn't mean we haven't been doing it, she just has to work harder and trust herself more.
Along with more congestion, her muscle tone has been much higher this week. It increased to the point that we couldn't put her in her stander on Monday because I couldn't get her ankle to bend enough to get into her standing boots. As the panicky feelings were rising from my stomach to my throat, I remembered that sometimes steps forward look almost exactly like steps backward.
To check this hopeful theory, I tested Abbie's voltage. I'll try to make this understandable...On the front of her body there are six energy points that we keep track of, often called "chakras". When Dr. Tennant was here in February we noted that Abbie would test normal on the forehead and the notch at the top of the sternum, but would then test low or very low from there down. That line of separation between normal and low corresponded to her liver, which still had a lot of healing to do.
As I've written lately, her liver has been hard at work and we are seeing the evidence of that in things like a great decrease in the amount of digestive enzymes she needs. When I tested her chakras yesterday she was normal on her forehead, top of sternum, and then high energy in the middle of her sternum and very high energy at the bottom of her sterum. When I measured below her navel I got the first low energy reading. So, it looks as though the "demarcation line" between normal or high energy and low energy is moving down her body. This is in line with Hering's Law, part of which states that healing occurs from the head down.
When I researched what the new low energy epicenter may correspond to, I smiled with satisfaction at seeing pieces fit together. In the past week we've been having to give Abbie glycerin suppositories occasionally, which is very odd for her. She's also suffered from gas and the skin around her nose is breaking out with little pimples. Well, the parts of the spine that correspond to her low energy center relate to the following symptoms: constipation, gas, skin eruptions...Her body keeps telling me what is going on, and reassuring me that what I see is just part of the healing process. I thank her every day for teaching me so much.
I have been giving Abbie tastes of food for a long time, but we haven't really been working hard on oral eating for a while. I go through phases with that -- putting a lot of effort into it, seeing minimal progress, then stepping down for a while. This past Saturday I was using baby food carrots just to give her tastes of food with a tongue depressor. After a few minutes I noticed that we were actually going through some food. She was confidently swallowing, and if I helped support her lower lip just a bit, these swallows were very effective. By the end of the day, Abbie had eaten three ounces of food. That may not be much for a voracious toddler, but for a girl who hasn't eaten that much in over two years (since she was decannulated) this was a huge step -- one that she didn't really build up to, but rather just accomplished out of the blue..."and then one day"
That day was a great day for eating because she was very clear, and breathing easily. That hasn't been the story for this week. She's been kind of junky, with more secretions, which makes eating difficult. But, that doesn't mean we haven't been doing it, she just has to work harder and trust herself more.
Along with more congestion, her muscle tone has been much higher this week. It increased to the point that we couldn't put her in her stander on Monday because I couldn't get her ankle to bend enough to get into her standing boots. As the panicky feelings were rising from my stomach to my throat, I remembered that sometimes steps forward look almost exactly like steps backward.
To check this hopeful theory, I tested Abbie's voltage. I'll try to make this understandable...On the front of her body there are six energy points that we keep track of, often called "chakras". When Dr. Tennant was here in February we noted that Abbie would test normal on the forehead and the notch at the top of the sternum, but would then test low or very low from there down. That line of separation between normal and low corresponded to her liver, which still had a lot of healing to do.
As I've written lately, her liver has been hard at work and we are seeing the evidence of that in things like a great decrease in the amount of digestive enzymes she needs. When I tested her chakras yesterday she was normal on her forehead, top of sternum, and then high energy in the middle of her sternum and very high energy at the bottom of her sterum. When I measured below her navel I got the first low energy reading. So, it looks as though the "demarcation line" between normal or high energy and low energy is moving down her body. This is in line with Hering's Law, part of which states that healing occurs from the head down.
When I researched what the new low energy epicenter may correspond to, I smiled with satisfaction at seeing pieces fit together. In the past week we've been having to give Abbie glycerin suppositories occasionally, which is very odd for her. She's also suffered from gas and the skin around her nose is breaking out with little pimples. Well, the parts of the spine that correspond to her low energy center relate to the following symptoms: constipation, gas, skin eruptions...Her body keeps telling me what is going on, and reassuring me that what I see is just part of the healing process. I thank her every day for teaching me so much.
Monday, April 09, 2007
The Stone Rolled Away
Happy Easter!! I hope it was a joyful and reflective day for you and your family. We had a wonderful Easter, which was such a relief to me. This is the holiday I have struggled with the most since it was the last major holiday before Abbie got hurt, and my memories of that Easter are so happy and vivid.
We enjoyed having church outside today, and even though I was tempted to think "I know this whole story", God brought me a new insight, just as I trusted he would. Pastor was talking about the morning of the resurrection, and mentioned the beginning of Mark chapter 16. Mary Magdalene, Mary the mother of Jesus and Salome bought spices so that they might more properly anoint Jesus' body. On the way to the tomb they turned to each other and asked "Who will roll the stone away from the entrance of the tomb?" (16:3) "But when they looked up, they saw that the stone, which had been very large, had been rolled away" (16:4)
They noted their concern about the large stone, but they didn't let their inability to move it stop them from going to the tomb. They went anyway. Oh, that we would live like that! One of the biggest stones in our lives has been the statement "There is no therapy that can help this severe of a brain injury." But, we have been called to seek after Abbie's healing, even in places where there is no path yet. And, I am trusting that when we arrive, we, too, will see that the stone separating us from our Abbie was rolled away long before we even began our journey.
After church we went to our holiday standby, the Pacific Club, for a delicious brunch. There was a long line of little girls waiting to have their faces painted by a talented clown. Abbie indicated she wanted to do this, so Ray took her over to wait in the line. After five minutes they returned to the table, with Ray saying the line was too long. I took a few bites of food, then looked over to see Abbie crying. After asking her, she indicated she was upset about the face painting. So, we promised we'd go when the line went down, and she stopped crying. In the interim we were able to get pictures of her with the Easter Bunny, something I'd wanted to do but didn't have the emotional stamina to do at the mall in front of crowds of strangers. Some days you just want to be either normal or invisible.
After the pictures I saw only two girls waiting by the clown, so I rolled Abbie over there. I was stung when the clown said firmly the girl she was working on was the last one. I asked for just a small heart or something simple, but she again stated she was done. I was seething, wanting to scream at her that it wasn't Abbie's fault she couldn't stand in line with the other girls. It also wasn't her fault that she couldn't run, play, hunt eggs and laugh like the other girls. But, all I could do was retreat to our table and fight back the tears. Ray then arrived on the scene, and morphed into SuperDaddy. Mommies ask, but SuperDaddies dictate, and he wasn't going to take "no" for an answer. A few minutes later, Abbie rolled back to the table with a pretty white flower on her cheek. She was so proud, and so happy. What one minute of work and a little paint can do for a girl! I promised her we would try to keep it on her face for school tomorrow, which elicited a big grin. I smiled on the way home, talking with Ray about the meany clown, and Abbie's tears...how normal!! Every 5 year old girl wants a face-painting!
There was also excitement for the boys, little and big, at brunch. And, it was evidence of God's protection for us. The parking lot always gets so full that the valets pull cars into aisles, in essence double parking them. Our van was parked like this, behind a small limousine. About halfway through lunch I wondered, "When did they start a barbeque on the buffet line?" Then the white smoke turned black and began billowing. I heard the fire trucks arrive at about the same time I heard, "There's a limo in the parking lot totally engulfed in flames." Well, it was a boy's paradise -- a buffet line of tasty food, candy for the taking, flames and firetrucks all in one place!! But, I was concerned about the van as I began hearing reports that cars around the limo were being scorched. Thankfully, the limo had been moved forward about 40 feet to let people out of a parking stall. Our van was safe, unlike the three cars the limo was parked behind which were melted and scorched. Our van, with its ramp, has been such a blessing to us, and life would have gotten much harder if it would've been damaged by the fire.
Well, Abbie just awoke, so I need to go finish feeding her. When I told her that was writing to you all about her pretty white flower, that got a big response and a beautiful smile. And, yes I do have pictures of it but cannot promise when I will be able to download and post them (I'm shooting for this year sometime).
HE'S ALIVE!!!!
We enjoyed having church outside today, and even though I was tempted to think "I know this whole story", God brought me a new insight, just as I trusted he would. Pastor was talking about the morning of the resurrection, and mentioned the beginning of Mark chapter 16. Mary Magdalene, Mary the mother of Jesus and Salome bought spices so that they might more properly anoint Jesus' body. On the way to the tomb they turned to each other and asked "Who will roll the stone away from the entrance of the tomb?" (16:3) "But when they looked up, they saw that the stone, which had been very large, had been rolled away" (16:4)
They noted their concern about the large stone, but they didn't let their inability to move it stop them from going to the tomb. They went anyway. Oh, that we would live like that! One of the biggest stones in our lives has been the statement "There is no therapy that can help this severe of a brain injury." But, we have been called to seek after Abbie's healing, even in places where there is no path yet. And, I am trusting that when we arrive, we, too, will see that the stone separating us from our Abbie was rolled away long before we even began our journey.
After church we went to our holiday standby, the Pacific Club, for a delicious brunch. There was a long line of little girls waiting to have their faces painted by a talented clown. Abbie indicated she wanted to do this, so Ray took her over to wait in the line. After five minutes they returned to the table, with Ray saying the line was too long. I took a few bites of food, then looked over to see Abbie crying. After asking her, she indicated she was upset about the face painting. So, we promised we'd go when the line went down, and she stopped crying. In the interim we were able to get pictures of her with the Easter Bunny, something I'd wanted to do but didn't have the emotional stamina to do at the mall in front of crowds of strangers. Some days you just want to be either normal or invisible.
After the pictures I saw only two girls waiting by the clown, so I rolled Abbie over there. I was stung when the clown said firmly the girl she was working on was the last one. I asked for just a small heart or something simple, but she again stated she was done. I was seething, wanting to scream at her that it wasn't Abbie's fault she couldn't stand in line with the other girls. It also wasn't her fault that she couldn't run, play, hunt eggs and laugh like the other girls. But, all I could do was retreat to our table and fight back the tears. Ray then arrived on the scene, and morphed into SuperDaddy. Mommies ask, but SuperDaddies dictate, and he wasn't going to take "no" for an answer. A few minutes later, Abbie rolled back to the table with a pretty white flower on her cheek. She was so proud, and so happy. What one minute of work and a little paint can do for a girl! I promised her we would try to keep it on her face for school tomorrow, which elicited a big grin. I smiled on the way home, talking with Ray about the meany clown, and Abbie's tears...how normal!! Every 5 year old girl wants a face-painting!
There was also excitement for the boys, little and big, at brunch. And, it was evidence of God's protection for us. The parking lot always gets so full that the valets pull cars into aisles, in essence double parking them. Our van was parked like this, behind a small limousine. About halfway through lunch I wondered, "When did they start a barbeque on the buffet line?" Then the white smoke turned black and began billowing. I heard the fire trucks arrive at about the same time I heard, "There's a limo in the parking lot totally engulfed in flames." Well, it was a boy's paradise -- a buffet line of tasty food, candy for the taking, flames and firetrucks all in one place!! But, I was concerned about the van as I began hearing reports that cars around the limo were being scorched. Thankfully, the limo had been moved forward about 40 feet to let people out of a parking stall. Our van was safe, unlike the three cars the limo was parked behind which were melted and scorched. Our van, with its ramp, has been such a blessing to us, and life would have gotten much harder if it would've been damaged by the fire.
Well, Abbie just awoke, so I need to go finish feeding her. When I told her that was writing to you all about her pretty white flower, that got a big response and a beautiful smile. And, yes I do have pictures of it but cannot promise when I will be able to download and post them (I'm shooting for this year sometime).
HE'S ALIVE!!!!
Thursday, April 05, 2007
Chatty Kathy
That's Abbie's new nickname. She has been so vocal lately, that finally yesterday Debbie asked her "Are you telling me something or are you just talking." She was just talking, just enjoying the sound of her voice. She is also using that voice to demand more interaction, particularly from her brothers. I had a talk with them yesterday about how suddenly it seems that Abbie is changing quickly, and that we have to be prepared to change with her. We have all gotten pretty used to how things have been for quite a while now, but I let them know that she is no longer going to settle for a quick "Hey, Abbie!" as they come through the door.
She enjoys it so much when they read books to her, play with her, even just sit up on her bed and watch movies with her. I think she is now figuring out how to make sure it happens more often. I've sensed for a while that as she improves each day, it is going to squish our comfort zone a little, and that even good things can cause turbulence during adjustment. I am really excited about her forcing us out of our ruts. She always was a little (lot) bossy -- it takes a big personality for a little girl to be in charge of four older brothers! I am thrilled to see this part of her emerging!
Rolfing went well for both of us yesterday. I am so glad I got to experience it so that I can understand what Abbie is going through. I'll write more details later, because I am fading fast right now.
I do want to pass on that Dr. Tennant made a 25-minute DVD that gives an overview of his approach to health. Although he could probably lecture for an entire day on each of the points, Dr. Tennant did a great job at boiling everything down so you can get a complete picture. If you are interested in a copy, please email me at varasix@aol.com.
Also, for those in Hawaii, it turns out that Dr. Tennant will be teaching a Level 1 Biomodulator course in August after all. I believe it will be 8/23-26. www.senergymedicalgroup.com for more info.
I hope to be able to post again before Easter, but in case time gets away from me, I hope that it is a very special time for you and your family. Each Easter since Abbie was injured has had such a different flavor for me, and this one is turning out to be pure sugar. We are in a good place, and each day keeps getting brighter!
She enjoys it so much when they read books to her, play with her, even just sit up on her bed and watch movies with her. I think she is now figuring out how to make sure it happens more often. I've sensed for a while that as she improves each day, it is going to squish our comfort zone a little, and that even good things can cause turbulence during adjustment. I am really excited about her forcing us out of our ruts. She always was a little (lot) bossy -- it takes a big personality for a little girl to be in charge of four older brothers! I am thrilled to see this part of her emerging!
Rolfing went well for both of us yesterday. I am so glad I got to experience it so that I can understand what Abbie is going through. I'll write more details later, because I am fading fast right now.
I do want to pass on that Dr. Tennant made a 25-minute DVD that gives an overview of his approach to health. Although he could probably lecture for an entire day on each of the points, Dr. Tennant did a great job at boiling everything down so you can get a complete picture. If you are interested in a copy, please email me at varasix@aol.com.
Also, for those in Hawaii, it turns out that Dr. Tennant will be teaching a Level 1 Biomodulator course in August after all. I believe it will be 8/23-26. www.senergymedicalgroup.com for more info.
I hope to be able to post again before Easter, but in case time gets away from me, I hope that it is a very special time for you and your family. Each Easter since Abbie was injured has had such a different flavor for me, and this one is turning out to be pure sugar. We are in a good place, and each day keeps getting brighter!
Tuesday, April 03, 2007
Things are Changing
In a journey of mostly intangible and unmeasurable advances, it is nice to have a concrete marker once in a while. As Abbie has recovered from the illness she just had (or finished the cleansing she was doing, which is what I think was really going on), she has provided us a good, solid token of improvement. Once I was again able to feed her the normal menu of raw milk and eggs, I found that she only needed half the amount of digestive enzymes we were giving her before. In fact, the previous amount made her sick! So, to me this says that her liver is functioning significantly better, and things inside her are truly changing. Hurrah!
We have been enjoying a visit from my Uncle Tim and Aunt Lois. They were here last February, and it has been exciting to hear their numerous comments about how different Abbie is now, as if "she's just going to start talking to us any minute!" Tim noticed how engaged Abbie is in what is going on around her, and picked up on how much she wants to be part of the kid-chaos that is almost constant around here. Comments like theirs really spur us on to continue to push forward.
And, God showed me once again this week how faithful and merciful He is. You may recall me writing about my special friend Katie Chesire when her husband Walt was deployed to Iraq. She was alone with 6 kids ages 8 and under. During his deployment she developed Grave's disease, and the course of treatment the physician was recommending would've prevented her from having any more children, which was a heartbreaking thought to her. She found an alternative route to regain her health, Walt came home safe, and this weekend they welcomed Iliana Kailani Grace to their litter of kittens. I remembered crying for Katie, and now I wept with joy -- God has heard and answered their cries in the most precious way possible. He is more than able, and His love is unfathomable! That little girl, not even a week old yet, is a powerful beacon in my life, shining out the message "Steady on!!"
We have been enjoying a visit from my Uncle Tim and Aunt Lois. They were here last February, and it has been exciting to hear their numerous comments about how different Abbie is now, as if "she's just going to start talking to us any minute!" Tim noticed how engaged Abbie is in what is going on around her, and picked up on how much she wants to be part of the kid-chaos that is almost constant around here. Comments like theirs really spur us on to continue to push forward.
And, God showed me once again this week how faithful and merciful He is. You may recall me writing about my special friend Katie Chesire when her husband Walt was deployed to Iraq. She was alone with 6 kids ages 8 and under. During his deployment she developed Grave's disease, and the course of treatment the physician was recommending would've prevented her from having any more children, which was a heartbreaking thought to her. She found an alternative route to regain her health, Walt came home safe, and this weekend they welcomed Iliana Kailani Grace to their litter of kittens. I remembered crying for Katie, and now I wept with joy -- God has heard and answered their cries in the most precious way possible. He is more than able, and His love is unfathomable! That little girl, not even a week old yet, is a powerful beacon in my life, shining out the message "Steady on!!"
Thursday, March 29, 2007
Wild Week
The important stuff first...Abbie is doing much better! She is still on oxygen, but only about 1 liter. We are suctioning only rarely now, and we are all sleeping better at night. We figured out one of the causes of our stress was an oxgyen concentrator that is not working properly. So, I would have it turned all the way up to 5 liters/min, and she would still be in the low 90s. I worried that I may have to break down and take her to the hospital, but when I switched her to tanked oxygen, her sats were great on 1.5 liters. Argh!! As Kyle would put it, it really "grinds my gears" when I lose sleep and worry because equipment malfunctions.
She did so well on Monday that I decided to stick with our plan for Tuesday. The boys and I flew over to Maui for the day to see my aunt and uncle, two cousins, their wives and two kids. We had a blast lolling on the beach and playing in the water at Kihei. Every time I called to check on Abbie she was doing fine. After a terrific day, we took the last plane back to Honolulu, and I was exhausted by the time we landed. I was so looking forward to just dropping into bed. Then, Ray called..."You need to get home as soon as you possibly can. I am really struggling to keep her sats up."
Instantly the boys' "fun mom" disappeared as "tired worried mom" snapped at them to get in the van, buckle up and be quiet! It was a pretty stressful hour or so after I arrived at the house, but we got her stabilized and able to sleep. The events, though, coupled with my exhaustion pushed me past my breaking point. I was crying by the time I collapsed into bed, only able to say "I cannot do this anymore, my body is just giving out."
I slept well, and the morning brought a whole new wonderful day. Rolfing session #2! Sally had asked me to keep good notes of any changes during the week. So, all our medical adventures were detailed in black and white. I suspect that the last session may have precipitated some of Abbie's struggles over the weekend, because as long-constricted fascia is manipulated, trapped toxins can finally be released. Sally decided that perhaps we should not do as much work the second session.
Abbie started smiling as soon as we walked through Sally's door, and was wide awake on the table with a heart rate of 83, which is normally a very relaxed sleeping rate for her. Sally taught me a couple techniques to use when Abbie has a fever (Triple Heater 16 and Still Point for those familiar with such things), and then spent some time on Abbie's lumbar spine. Again, I saw more of "normal Abbie" emerge and I was transfixed. Most of the session focused on Abbie's thighs and hips. Sally described the fascia as being like pantyhose spread over the muscles. So the women out there can really relate to how Abbie's legs feel...you know that annoying feeling of panythose being twisted into the wrong position. That is what Abbie's legs feel like all the time as her fascia has become misshapen in response to tense muscles. So, we women can also imagine the relief Abbie felt as Sally loosened these bindings.
Sally gave me one other assignment at the end of last week's session. She wanted to see video of Abbie before she was hurt so that she could observe Abbie's structure and how she used her body. This made a lot of sense, but I wasn't excited about finding the video. I procrastinated that task until yesterday morning. I laughed watching her try to rock in a yet-to-be-assembled rocking chair. I howled watching her steal everyone's ice cream at Kyle's birthday party. I sat in stony silence of foreshadowing watching her play in a pool with RJ. What hit me the hardest was her voice...that sweet little girl voice, still using many words only understood by her family. That's not the voice I hear in my heart any more...I hear a more grown up, eloquent voice. I'd almost forgotten how little she was. The pain of watching these images lodged in that deep place that goes unseen and for the most part unacknowledged, especially by me. Two events later in the day would open that place up and clear it out.
The first was at Sally's house. I mentioned that she taught me how to get Abbie to still point. After we'd loaded Abbie in the car, I went back in to bid Sally farewell. Changing the sheet on the table, she asked if I had a couple minutes. Of course!! She said she wanted me to feel still point so I would better be able to do it for Abbie. As she'd told me earlier, Rolfing is teamwork, not just her working on me. So, as she cupped my head in her hands she taught me a specific way to breathe. I had to really concentrate on that, but got it right a few times. When I stood up again after five minutes on the table the difference was amazing. I'd walked in feeling like the entire weight of my body was riding on my sacrum. Now I felt much lighter. More importantly, recently I've caught myself holding my breath and grinding my teeth during the day. That "deep place" seems to be filled to the brim, and overflows now even during waking hours. As I walked out to the car I felt like I was really breathing for the first time in ages.
As I was leaving, Sally commented that because Abbie and I are so tied together, it would probably be good for me to have some work done as well. I was thinking the same thing, and hoped to squeeze into her schedule after her trip next week. She said she really felt we needed to do it soon, so she is fitting me in next Wednesday morning. I am so excited to begin this process to help Abbie and save myself!
So, I'd gotten some physical help to deal with the sadness of the video, but the even brought what I needed even more..spiritual help. Our small group is studying the Beatitudes from the Sermon on the Mount in Matthew 5. I chose to use my amplified Bible, and was so glad I did when I read verse 4, about those who mourn being comforted.
Here is what I read: "Blessed and enviably happy [with a happiness produced by the experience of God's favor and especially conditioned by the revelation of His matchless grace] are those who mourn, for they shall be comforted.
We truly have been comforted in ways as unfathomable as his grace, and that comfort continues as does our mourning. It's not acute anymore, it's not eyes-swollen sobbing or deal-making with God, but it does continue. When we imagine who she would have been. When we miss who she was. When we count the cost our family, especially the boys, have paid. But, through this we have been "especially conditioned by the revelation of His matchless grace", and the depth of that blessing really cannot be measured.
I read a book today that sums up our brain injury journey..."Oh, The Places You'll Go!!" by Dr. Seuss. If you ever wonder what this life is like, read that book - we've experienced almost every page so far.
On the opposite end of the spectrum from dear Dr. S., lies Aeschylus, who lived from 525 BC - 456 BC A dear friend sent me this quote that sums up where I've been personally in the last couple months:
"He who learns must suffer. And even in our sleep, pain that cannot forget falls, drop by drop, upon the heart. And in our own despair, and against our will, comes Wisdom by the awful Grace of God."
She did so well on Monday that I decided to stick with our plan for Tuesday. The boys and I flew over to Maui for the day to see my aunt and uncle, two cousins, their wives and two kids. We had a blast lolling on the beach and playing in the water at Kihei. Every time I called to check on Abbie she was doing fine. After a terrific day, we took the last plane back to Honolulu, and I was exhausted by the time we landed. I was so looking forward to just dropping into bed. Then, Ray called..."You need to get home as soon as you possibly can. I am really struggling to keep her sats up."
Instantly the boys' "fun mom" disappeared as "tired worried mom" snapped at them to get in the van, buckle up and be quiet! It was a pretty stressful hour or so after I arrived at the house, but we got her stabilized and able to sleep. The events, though, coupled with my exhaustion pushed me past my breaking point. I was crying by the time I collapsed into bed, only able to say "I cannot do this anymore, my body is just giving out."
I slept well, and the morning brought a whole new wonderful day. Rolfing session #2! Sally had asked me to keep good notes of any changes during the week. So, all our medical adventures were detailed in black and white. I suspect that the last session may have precipitated some of Abbie's struggles over the weekend, because as long-constricted fascia is manipulated, trapped toxins can finally be released. Sally decided that perhaps we should not do as much work the second session.
Abbie started smiling as soon as we walked through Sally's door, and was wide awake on the table with a heart rate of 83, which is normally a very relaxed sleeping rate for her. Sally taught me a couple techniques to use when Abbie has a fever (Triple Heater 16 and Still Point for those familiar with such things), and then spent some time on Abbie's lumbar spine. Again, I saw more of "normal Abbie" emerge and I was transfixed. Most of the session focused on Abbie's thighs and hips. Sally described the fascia as being like pantyhose spread over the muscles. So the women out there can really relate to how Abbie's legs feel...you know that annoying feeling of panythose being twisted into the wrong position. That is what Abbie's legs feel like all the time as her fascia has become misshapen in response to tense muscles. So, we women can also imagine the relief Abbie felt as Sally loosened these bindings.
Sally gave me one other assignment at the end of last week's session. She wanted to see video of Abbie before she was hurt so that she could observe Abbie's structure and how she used her body. This made a lot of sense, but I wasn't excited about finding the video. I procrastinated that task until yesterday morning. I laughed watching her try to rock in a yet-to-be-assembled rocking chair. I howled watching her steal everyone's ice cream at Kyle's birthday party. I sat in stony silence of foreshadowing watching her play in a pool with RJ. What hit me the hardest was her voice...that sweet little girl voice, still using many words only understood by her family. That's not the voice I hear in my heart any more...I hear a more grown up, eloquent voice. I'd almost forgotten how little she was. The pain of watching these images lodged in that deep place that goes unseen and for the most part unacknowledged, especially by me. Two events later in the day would open that place up and clear it out.
The first was at Sally's house. I mentioned that she taught me how to get Abbie to still point. After we'd loaded Abbie in the car, I went back in to bid Sally farewell. Changing the sheet on the table, she asked if I had a couple minutes. Of course!! She said she wanted me to feel still point so I would better be able to do it for Abbie. As she'd told me earlier, Rolfing is teamwork, not just her working on me. So, as she cupped my head in her hands she taught me a specific way to breathe. I had to really concentrate on that, but got it right a few times. When I stood up again after five minutes on the table the difference was amazing. I'd walked in feeling like the entire weight of my body was riding on my sacrum. Now I felt much lighter. More importantly, recently I've caught myself holding my breath and grinding my teeth during the day. That "deep place" seems to be filled to the brim, and overflows now even during waking hours. As I walked out to the car I felt like I was really breathing for the first time in ages.
As I was leaving, Sally commented that because Abbie and I are so tied together, it would probably be good for me to have some work done as well. I was thinking the same thing, and hoped to squeeze into her schedule after her trip next week. She said she really felt we needed to do it soon, so she is fitting me in next Wednesday morning. I am so excited to begin this process to help Abbie and save myself!
So, I'd gotten some physical help to deal with the sadness of the video, but the even brought what I needed even more..spiritual help. Our small group is studying the Beatitudes from the Sermon on the Mount in Matthew 5. I chose to use my amplified Bible, and was so glad I did when I read verse 4, about those who mourn being comforted.
Here is what I read: "Blessed and enviably happy [with a happiness produced by the experience of God's favor and especially conditioned by the revelation of His matchless grace] are those who mourn, for they shall be comforted.
We truly have been comforted in ways as unfathomable as his grace, and that comfort continues as does our mourning. It's not acute anymore, it's not eyes-swollen sobbing or deal-making with God, but it does continue. When we imagine who she would have been. When we miss who she was. When we count the cost our family, especially the boys, have paid. But, through this we have been "especially conditioned by the revelation of His matchless grace", and the depth of that blessing really cannot be measured.
I read a book today that sums up our brain injury journey..."Oh, The Places You'll Go!!" by Dr. Seuss. If you ever wonder what this life is like, read that book - we've experienced almost every page so far.
On the opposite end of the spectrum from dear Dr. S., lies Aeschylus, who lived from 525 BC - 456 BC A dear friend sent me this quote that sums up where I've been personally in the last couple months:
"He who learns must suffer. And even in our sleep, pain that cannot forget falls, drop by drop, upon the heart. And in our own despair, and against our will, comes Wisdom by the awful Grace of God."
Monday, March 26, 2007
A Better Night
Thank you for praying! Last night was significantly better than Saturday night. Abbie only needed two liters through the night, and I gave her nebulizers at 9pm and 5am just to keep her secretions loose, not because she was really struggling. Her fever did rise again to 103 around 5am. That's the number at which I normally break down and give her some Tylenol.
I am a big fan of tea tree oil, but recently found out that rosemary oil has the same properties but is much more potent. Last night I rubbed some diluted rosemary oil on her chest, and I think it did make a difference. I put a special essential oil blend for respiratory issues on her big toe, and that also helped her. It's funny that a few minutes after putting it on her big toe, you can smell the oil on her breath.
So, she has been sleeping now for two hours under Debbie's watchful eye, with sats of 99 and heartrates in the 90s. (That sure beats the 200 I saw on Saturday night!) I believe we have turned the corner -- thanks so much for your prayers!
I am a big fan of tea tree oil, but recently found out that rosemary oil has the same properties but is much more potent. Last night I rubbed some diluted rosemary oil on her chest, and I think it did make a difference. I put a special essential oil blend for respiratory issues on her big toe, and that also helped her. It's funny that a few minutes after putting it on her big toe, you can smell the oil on her breath.
So, she has been sleeping now for two hours under Debbie's watchful eye, with sats of 99 and heartrates in the 90s. (That sure beats the 200 I saw on Saturday night!) I believe we have turned the corner -- thanks so much for your prayers!
Sunday, March 25, 2007
Out of the Blue
When I am writing an update at 2am, you know it can't be all butterflies and sunshine. Our family had a wonderful day today, with a surprise visit from old Los Alamos friends, the Desko family. They lived up the street from us back then, and it was to Cheryl that RJ proudly announced Abbie's arrival by crowing "We got a grill!!"
We spent several hours down at the Outrigger Canoe Club, which afforded us a spectactular view of postcard-worthy day. We kept Abbie under the umbrella all day and for the most part kept her well-shaded. Or so we thought. She was kind of whiny the last 30 minutes we were down there, and all the way home, which is very unlike her. Once we got home it didn't take us long to determine the source of her discomfort, because it was looking right at us. The bright pink shade of the right side of her face let us know that we hadn't protected her from the sun as well as we thought.
We found some good aloe, got her all settled and then let Genevieve take over while Ray and I took the twins to a UH baseball game. We arrived home at 9 to find Chase helping with Abbie, who was on three liters of oxygen and stuggling to breathe. Her sats were in the mid-80s, and the OJT nurse part of me kicked in as I started barking orders at everyone.
Turns out she had crashed about 10 minutes before we arrived home, at the beginning of a feeding. We quickly gave her a nebulizer treatment and kicked the concentrator up to 5 liters. The neb helped get her sats back up into the mid-90s fairly quickly, so I then started a fast drip of water, vitamin C and some essential oils.
I switched her to a tank of oxygen because I don't trust the concentrator to actually put out a high flow of O2. All that excitement was five hours ago, and Abbie and I have yet to settle down. She is trying hard to sleep, but I keep having to wake her to keep her sats up --either to suction or to move her around. The highest the regulator on the tank will go is 4 liters, so I am trying my best to just make it through the night on that. The last hour has been particularly challenging, as even with a second nebulizer treatment, I just can't keep her sats up. She's running about 101 degrees, and is pretty exhausted. Please just pray for her to bounce back. This all came out of the blue, so I'm hoping it's just a little bump and not a form of the head/chest infection that has been going around lately.
I know that right now Abbie's angel is before the throne of God (Matthew 18:10), but I also know how powerfully your prayers have trimmed the sails in this journey. So, although it's been a busy night, I am at peace knowing she is in very good hands!
We spent several hours down at the Outrigger Canoe Club, which afforded us a spectactular view of postcard-worthy day. We kept Abbie under the umbrella all day and for the most part kept her well-shaded. Or so we thought. She was kind of whiny the last 30 minutes we were down there, and all the way home, which is very unlike her. Once we got home it didn't take us long to determine the source of her discomfort, because it was looking right at us. The bright pink shade of the right side of her face let us know that we hadn't protected her from the sun as well as we thought.
We found some good aloe, got her all settled and then let Genevieve take over while Ray and I took the twins to a UH baseball game. We arrived home at 9 to find Chase helping with Abbie, who was on three liters of oxygen and stuggling to breathe. Her sats were in the mid-80s, and the OJT nurse part of me kicked in as I started barking orders at everyone.
Turns out she had crashed about 10 minutes before we arrived home, at the beginning of a feeding. We quickly gave her a nebulizer treatment and kicked the concentrator up to 5 liters. The neb helped get her sats back up into the mid-90s fairly quickly, so I then started a fast drip of water, vitamin C and some essential oils.
I switched her to a tank of oxygen because I don't trust the concentrator to actually put out a high flow of O2. All that excitement was five hours ago, and Abbie and I have yet to settle down. She is trying hard to sleep, but I keep having to wake her to keep her sats up --either to suction or to move her around. The highest the regulator on the tank will go is 4 liters, so I am trying my best to just make it through the night on that. The last hour has been particularly challenging, as even with a second nebulizer treatment, I just can't keep her sats up. She's running about 101 degrees, and is pretty exhausted. Please just pray for her to bounce back. This all came out of the blue, so I'm hoping it's just a little bump and not a form of the head/chest infection that has been going around lately.
I know that right now Abbie's angel is before the throne of God (Matthew 18:10), but I also know how powerfully your prayers have trimmed the sails in this journey. So, although it's been a busy night, I am at peace knowing she is in very good hands!
Wednesday, March 21, 2007
Rolfing
I know I've already written once today, but we don't get many days like this one...when changes happen within an hour! I recall the day Abbie was decannulated two years ago, and in an instant she went from a girl with a trach, to a girl with a band-aid. But, mostly this journey has been about celebrating incremental steps and patiently watching the miracle unfold.
Today we met a woman named Sally, who has been a Rolfer for 20 years. Rolfing involves working with the fascia, or connective tissue, in the body. I did't quite know what to expect, so just sat quietly on the opposite side of the table. Sally put her hands under Abbie's head and within a minute Abbie gave a big sigh of relief. We were off...
The session consisted mostly of Sally pressing, holding, or slightly rotating certain parts of Abbie. As Sally focused on Abbie's diaphragm, Abbie's breathing got deeper and more relaxed as the session progressed, and by the end of it her ribs, which had been concave and jutted out at the bottoms, were rounded and normal again. I couldn't believe it! Those ribs have vexed me for many, many months, wondering how we were going to get them back into proper shape, worrying about the commentary they were on Abbie's ability to draw in normal breaths. To look down and see a normal healthy chest almost took my breath away.
Sally also worked on the area between Abbie's hips and knees. Abbie has quite a bit of external rotation in her legs, despite the all the therapies and exercises. With a few minutes of "processing" Sally had Abbie's legs soft and at rest with both knees pointing to the ceiling.
The soft palate of Abbie's mouth is quite narrow, partially because she has not been eating and talking, and partially because she is taking after her brothers and ensuring at least one orthodontist's kids get their college funded by our family. Sally did some work inside Abbie's mouth, and I also saw changes there. I could not believe that I was watching things change right before my eyes!
I feel so blessed to have someone like Sally five minutes from our house! When she asked what drew me to Rolfing, I pulled out the "Energy Medicine: The Scientific Basis" book and she smiled. The author was her physiology teacher. Small World...No Coincidences!
We have appointments scheduled for the next two Wednesdays, and I am very anxious to see what those session will bring. It is refreshing and joyful to have immediate gratification, I must admit! And, to see the solution for so many "unsolvable" problems, like shortened heel cords and diminished lung capacity. Can it really be this simple? I guess I've found that's the way God usually works, simple but profound.
One more partner in our journey, one more piece for our puzzle, and one more day for the scrapbook!
Today we met a woman named Sally, who has been a Rolfer for 20 years. Rolfing involves working with the fascia, or connective tissue, in the body. I did't quite know what to expect, so just sat quietly on the opposite side of the table. Sally put her hands under Abbie's head and within a minute Abbie gave a big sigh of relief. We were off...
The session consisted mostly of Sally pressing, holding, or slightly rotating certain parts of Abbie. As Sally focused on Abbie's diaphragm, Abbie's breathing got deeper and more relaxed as the session progressed, and by the end of it her ribs, which had been concave and jutted out at the bottoms, were rounded and normal again. I couldn't believe it! Those ribs have vexed me for many, many months, wondering how we were going to get them back into proper shape, worrying about the commentary they were on Abbie's ability to draw in normal breaths. To look down and see a normal healthy chest almost took my breath away.
Sally also worked on the area between Abbie's hips and knees. Abbie has quite a bit of external rotation in her legs, despite the all the therapies and exercises. With a few minutes of "processing" Sally had Abbie's legs soft and at rest with both knees pointing to the ceiling.
The soft palate of Abbie's mouth is quite narrow, partially because she has not been eating and talking, and partially because she is taking after her brothers and ensuring at least one orthodontist's kids get their college funded by our family. Sally did some work inside Abbie's mouth, and I also saw changes there. I could not believe that I was watching things change right before my eyes!
I feel so blessed to have someone like Sally five minutes from our house! When she asked what drew me to Rolfing, I pulled out the "Energy Medicine: The Scientific Basis" book and she smiled. The author was her physiology teacher. Small World...No Coincidences!
We have appointments scheduled for the next two Wednesdays, and I am very anxious to see what those session will bring. It is refreshing and joyful to have immediate gratification, I must admit! And, to see the solution for so many "unsolvable" problems, like shortened heel cords and diminished lung capacity. Can it really be this simple? I guess I've found that's the way God usually works, simple but profound.
One more partner in our journey, one more piece for our puzzle, and one more day for the scrapbook!
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