We had four well-spent hours at Shriner's this morning, as we met with their pediatrician, a nurse practitioner, the surgeon, the anesthesiologist, dietitians, and care coordinators. I wrote an entire page of questions last night so that I wouldn't forget one in the midst of emotion and detail today. After about half an hour the surgeon had answered all of them except one...where the surgery will be done. When I broached this questioned, he just looked at us squarely and simply said, "We're doing it at Kap." Oh, OK...end of discussion. But, we still wanted to know what brought him to that conclusion.
Abbie will be recovering in the PICU after coming out of surgery, so he feels that it just makes sense to do the surgery in the same place. We agree, although the decision to do the surgery at Kapiolani in no way reflects poorly on Shriner's, for whom we have great respect and trust. After receiving many answers, and now better knowing what to expect when we see Abbie for the first time, I am grateful that we are going to the PICU. She will have a few lines in, and most likely a central line in her neck. She will probably remain on a ventilator through the first night. She will also be in a cast extending from the bottom of her ribs to her toes. I will be glad to be surrounded by a critical care staff that we know (and love). Caring for a sick child on a normal pediatric floor is very demanding for the parent, and I was unsure I would be able to stay on top of her pain during the first few days. The anesthesiologist had some very good ideas about this.
Just prior to the surgery Abbie will receive an epidural, which she will keep for a couple days. This will allow us to aggressively control her pain without drugging her into a stupor. As I'd suspected, the first 3-5 days are going to be very tough, pain-wise. I'll be writing a gargantuan prayer list at the end of this update, and pain control will be very high on it.
I've been asked several times, "What exactly is going to be done?" Well, here's the medicalese version: bilateral proximal femoral varus derotational osteotomies, right pelvic acetabuloplasty. Here's the mom-translation: a surgery on both sides, removing a 1" portion of each femur, turning the head of the femur into the proper rotation and reinserting into the hip socket, then securing it with a metal blade and using screws to connect each end of the femur at the cuts. On the right side they have to do some reconstruction of the acetabulum, using the bony material removed from each leg. This is the most complex part of the procedure, and will necessitate a second incision on the right side. I wanted to know where the incisions would be...from the "bump at the top of the leg" to about halfway to her knee on each side, and then from the middle of her groin, around the top of her hip bone to her back...that's about when I stop asking those kind of questions!
We're now very aware of the risks, complications, and potential challenges during recovery and beyond. We are realistic on one hand, but also very optimistic. After all, this is Abbie we are talking about. She was on her game today! She answered many of the pediatrician's questions herself, using her switch, and even laughed when the surgeon was checking her belly. When the blood pressure cuff went on, she immediately looked right at it and scowled. I asked the surgeon what the critical factors for success were, and the only one that was really key to him was the health of the child going into the surgery. In his experience that is the major differentiator. Our girl is healthy as a horse, so that gave me a boost of confidence.
So, we are scheduled for next Tuesday, 9/18, at 1130. Abbie will probably be in the OR about 6 hours, so by the time we are settled in the PICU it will be late in the evening Hawaii time, and way after bedtime for everyone else. But, I will do my best to post timely updates and fresh prayer requests.
Speaking of prayer, here is the monster list:
1. Complete success with a perfect outcome; wisdom, skill, and an "in the zone day" for the surgery team.
2. Effective pain control, and a quick diminishing of pain as the days pass
3. Minimal blood loss (100cc expected) so that Abbie doesn't need a transfusion.
4. No infections!
5. Quick recovery from the anesthesia with no complications.
6. Protection of her respiratory system; no events during surgery or recovery.
7. Rapid return of stomach and gut function so she can tolerate her normal diet.
8. No nerve damage. On the right side, her sciatic nerve will very much be "in the neighborhood" as they reconstruct her hip socket.
9. For necessary equipment and nursing staff to be in place for discharge.
10. For grace, peace, assurance and hope.
As I sat down to write this tonight, Ray's email account was open, and seeing a name we are fond of I asked if I could open the message. Again the tears flowed as I read, and I want to share this with you:
This is Mia Letterie from Seattle. I have been thinking about Abby day and night. I have been praying for Abby as well as keeping up with Tiffany's constant postings on prayforabby.org. I hope that her surgery goes well. Here I have attached a story that I have been meaning to send to you. In class last year we were asked to pick a hero. My first question was is it ok if our hero is younger than us. My teacher replied yes. The minute he said yes I knew who I was going to write about: Abby. So here is my final copy of the story. I have gotten everything from the website. I hope it is close to right and I hope that you enjoy reading it!
Well, Mia - your story was spot-on, especially the part about Abbie being a fighter. We loved it, and one day Abbie will read it for herself!! And you know what? My hero is younger than me, too!
Monday, September 10, 2007
Saturday, September 08, 2007
The White Line
The relaxation of a wonderful Labor Day spent on the beach at Sherwood Forest was consumed like dry tinder in the days that followed. On Tuesday we had Abbie's pre-op appointment with her pediatrician. She is good and healthy, but her doctor raised some concerns about where the procedure will actually be done. Shriner's Hospital, where it is scheduled to be performed, is right across the street from Kapiolani, where Abbie has received all of her other care. It is likely that she will be recovering, at least immediately, in the PICU at Kapiolani, since Shriner's doesn't have intensive care patient settings. Dr. L. wondered why we didn't just have the surgery done at Kapiolani, in case of a "bad event" during the surgery. We honestly hadn't considered this before because we have a lot of faith in the folks at Shiner's, and we have our minds and hearts set that Abbie is going to fly through this, without a "bad event" in sight.
Wednesday morning brought a flurry of phone calls between me, Ray, and Shriner's, all focused on planning for a worst case scenario. Spending that much time thinking about a heartbreaking outcome put me into a pea-soup fog. I didn't realize how non-functional I was until I missed a long-awaited meeting with a friend, and was stumbling through the rest of my day grasping, weeping, and recollecting myself.
As we've done so many times during this journey, we talked out our fears and prayed through them with our small group that evening.
We fully anticipated the surgeon would not support moving the surgery, but did not hear anything from him on Thursday. What did Tom Petty say about the waiting? He is right, it's the hardest part. I was still socked in, but at least I'd turned my headlights on. As I did so, a curious thing began to happen -- bits of encouragement began arriving from unexpected places, weaving together to form a line I could follow through the fog.
On Thursday I received the itinerary for a women's retreat I will be attending next weekend. The coordinator included postcards with a Scripture verse, a different one for each woman. She said she'd assigned them randomly, and just wanted us to meditate on them until next weekend when we could share what meaning they had for us. My card said, "Psalms 4:8" Like a treasure hunter, I opened my Bible with expectation. Not to be disappointed, I read, "In peace I will both lie down and sleep, For Thou alone, O Lord, dost make me to dwell in safety." I just grinned, because one of the first things to go during times of heightened stress is my sleep.
On Friday I took Kyle to the pediatrician for a physical. Ray met me there with yet another birthday present for Abbie (a Hello Kitty backpack, and makeup kit which she LOVED!). He also pulled out a card addressed to us. The front read, "We don't always know what the plan is, but we always know there's a plan", while the inside said, "Relax and know that God's got it all worked out." At the bottom was Luke 1:37, "Nothing is impossible with God." Passengers disembarking the elevators must've thought it strange to see a woman choking up in the hallway, but Kelle, you will never know how profoundly you impacted me...you spoke God's words into my life, and His love into my heart!
We still hadn't heard from the surgeon by late Friday afternoon, so Ray called him. It turns out that he isn't absolutely opposed to doing the surgery at Kapiolani, since Abbie will probably go there to recover after the surgery. But, since it is such a major procedure, it requires a lot of equipment, which they have in place at Shriner's. The staff at Shriner's is also very adept at supporting him during the surgery because they do it all the time. So, it comes down to a balance of comforts. Will we be more comfortable at Kapiolani where we know all the staff and she can have the same anesthesiologist she's always had, with the intensive care resources in the same building, yet have a surgeon working in a place where he is not quite as comfortable, with a staff not quite as used to doing this procedure? Or, will we be more at ease at at Shriner's, with a new anesthesiologist, and the emergent and intensive care resources across the street, but with the surgeon working in "his backyard.?" We honestly don't know the answer to that tonight, and will talk it out at Abbie's pre-op appointment on Monday. Please pray for wisdom for us in this matter, it is a big decision. We've gotten used to our fairly stable life that has been devoid of decisions of this magnitude for quite some time. Truly, we really could use your prayers right now!
Today brought a huge highlight for me. Kapiolani was having the last day of a radiothon at John Domini's, a beautiful restaurant filled with views of water, waves, and Diamond Head. We arrived just a wee bit late, and were seated at a table with Jerry Coffee and Susan Page. For the benefit of those who may not be aware of his story, Jerry was a Navy Commander when he was shot down over Vietnam. He spent the next 7 years as a POW, often in solitary confinement. I read about his ordeal as a teenager, and it made a lasting impression that I often called to mind as I later served as a military officer myself. We made small talk for a while, and then just enjoyed the show. As I looked at him, framed by stunning scenery, sitting next to his beautiful wife, I thought, "There IS life after the storm, and it can be radiant!"
Finally, Susan asked about Abbie, wondering why she was in a wheelchair and being fed through a tube. As we shared the beginning of her story it reaffirmed in me just how far she has come. Susan told her, "You are already a miracle girl!" Amen to that!
As we stood to go, Jerry's time as a POW came up; I told him I read about it as a youth, and that really, as I thought about it, POW life is about the only thing I can compare this journey to..I am not in control of it; I do not have a rewind button to change it nor a fast-forward button to hurry it, I do not know when it is going to change or end...and I wouldn't give it back if I could. As Jerry said, "I wouldn't pay a dime to do it again, but I wouldn't give it back for a million dollars." He also said one other thing that is going to stick with me. Each day, at the end of the day, no matter what kind of day it had been (and I know his "bad" days were much more brutal than mine), he would just think, "I am one day closer." Never any doubt, just faith. One day closer.
Jerry Coffee has long been one of my heroes, and I believe God allowed our paths to cross today to bring that thin white line into fluorescent brilliance. Like a driver on a foggy night, I need only follow that line to reach our destination. Abbie continues to improve each day. The hyperbaric treatments are a blessing, and are helping with varied things like her vision and her muscle tone. Lacking a driver's license, she is already much better than I at following that white line through the fog. She is unshakable, moving ever forward toward being whole again. She humbles me as each day I watch her move one day closer. Never any doubt, just faith. One day closer.
"At some time or another we all get shot down, we are all POWs, "prisoners of woe." Be tough. Bounce back. Learn not just to survive, but to go beyond our survival: finding the purpose in our adversity." -- Captain Gerald Coffee
Wednesday morning brought a flurry of phone calls between me, Ray, and Shriner's, all focused on planning for a worst case scenario. Spending that much time thinking about a heartbreaking outcome put me into a pea-soup fog. I didn't realize how non-functional I was until I missed a long-awaited meeting with a friend, and was stumbling through the rest of my day grasping, weeping, and recollecting myself.
As we've done so many times during this journey, we talked out our fears and prayed through them with our small group that evening.
We fully anticipated the surgeon would not support moving the surgery, but did not hear anything from him on Thursday. What did Tom Petty say about the waiting? He is right, it's the hardest part. I was still socked in, but at least I'd turned my headlights on. As I did so, a curious thing began to happen -- bits of encouragement began arriving from unexpected places, weaving together to form a line I could follow through the fog.
On Thursday I received the itinerary for a women's retreat I will be attending next weekend. The coordinator included postcards with a Scripture verse, a different one for each woman. She said she'd assigned them randomly, and just wanted us to meditate on them until next weekend when we could share what meaning they had for us. My card said, "Psalms 4:8" Like a treasure hunter, I opened my Bible with expectation. Not to be disappointed, I read, "In peace I will both lie down and sleep, For Thou alone, O Lord, dost make me to dwell in safety." I just grinned, because one of the first things to go during times of heightened stress is my sleep.
On Friday I took Kyle to the pediatrician for a physical. Ray met me there with yet another birthday present for Abbie (a Hello Kitty backpack, and makeup kit which she LOVED!). He also pulled out a card addressed to us. The front read, "We don't always know what the plan is, but we always know there's a plan", while the inside said, "Relax and know that God's got it all worked out." At the bottom was Luke 1:37, "Nothing is impossible with God." Passengers disembarking the elevators must've thought it strange to see a woman choking up in the hallway, but Kelle, you will never know how profoundly you impacted me...you spoke God's words into my life, and His love into my heart!
We still hadn't heard from the surgeon by late Friday afternoon, so Ray called him. It turns out that he isn't absolutely opposed to doing the surgery at Kapiolani, since Abbie will probably go there to recover after the surgery. But, since it is such a major procedure, it requires a lot of equipment, which they have in place at Shriner's. The staff at Shriner's is also very adept at supporting him during the surgery because they do it all the time. So, it comes down to a balance of comforts. Will we be more comfortable at Kapiolani where we know all the staff and she can have the same anesthesiologist she's always had, with the intensive care resources in the same building, yet have a surgeon working in a place where he is not quite as comfortable, with a staff not quite as used to doing this procedure? Or, will we be more at ease at at Shriner's, with a new anesthesiologist, and the emergent and intensive care resources across the street, but with the surgeon working in "his backyard.?" We honestly don't know the answer to that tonight, and will talk it out at Abbie's pre-op appointment on Monday. Please pray for wisdom for us in this matter, it is a big decision. We've gotten used to our fairly stable life that has been devoid of decisions of this magnitude for quite some time. Truly, we really could use your prayers right now!
Today brought a huge highlight for me. Kapiolani was having the last day of a radiothon at John Domini's, a beautiful restaurant filled with views of water, waves, and Diamond Head. We arrived just a wee bit late, and were seated at a table with Jerry Coffee and Susan Page. For the benefit of those who may not be aware of his story, Jerry was a Navy Commander when he was shot down over Vietnam. He spent the next 7 years as a POW, often in solitary confinement. I read about his ordeal as a teenager, and it made a lasting impression that I often called to mind as I later served as a military officer myself. We made small talk for a while, and then just enjoyed the show. As I looked at him, framed by stunning scenery, sitting next to his beautiful wife, I thought, "There IS life after the storm, and it can be radiant!"
Finally, Susan asked about Abbie, wondering why she was in a wheelchair and being fed through a tube. As we shared the beginning of her story it reaffirmed in me just how far she has come. Susan told her, "You are already a miracle girl!" Amen to that!
As we stood to go, Jerry's time as a POW came up; I told him I read about it as a youth, and that really, as I thought about it, POW life is about the only thing I can compare this journey to..I am not in control of it; I do not have a rewind button to change it nor a fast-forward button to hurry it, I do not know when it is going to change or end...and I wouldn't give it back if I could. As Jerry said, "I wouldn't pay a dime to do it again, but I wouldn't give it back for a million dollars." He also said one other thing that is going to stick with me. Each day, at the end of the day, no matter what kind of day it had been (and I know his "bad" days were much more brutal than mine), he would just think, "I am one day closer." Never any doubt, just faith. One day closer.
Jerry Coffee has long been one of my heroes, and I believe God allowed our paths to cross today to bring that thin white line into fluorescent brilliance. Like a driver on a foggy night, I need only follow that line to reach our destination. Abbie continues to improve each day. The hyperbaric treatments are a blessing, and are helping with varied things like her vision and her muscle tone. Lacking a driver's license, she is already much better than I at following that white line through the fog. She is unshakable, moving ever forward toward being whole again. She humbles me as each day I watch her move one day closer. Never any doubt, just faith. One day closer.
"At some time or another we all get shot down, we are all POWs, "prisoners of woe." Be tough. Bounce back. Learn not just to survive, but to go beyond our survival: finding the purpose in our adversity." -- Captain Gerald Coffee
Wednesday, August 29, 2007
Six Years Old!
What a dilemma..I have not written because so much has been going on, and now I have to try to catch up on all the great things that have happened over the last couple of weeks! But, I do actually have photos to share (please don't faint with surprise). Please go to http://gallery.mac.com/varafamily#10007 to see a collection recent pictures.
Of course, the biggest event of the last couple of weeks was Abbie's 6th birthday. As for so many other moms in my situation, party planning is a tricky, and even painful proposition. We have a profound reason to celebrate, and yet it is sometimes difficult to keep the focus on what we do have rather than what we, and Abbie, are missing. So, that is my excuse for lagging in the party coordination department. I was hoping to get in the party mood by going with Abbie to a party for two of her friends, Katrina and Christa Cheshire, on 8/19. I knew Abbie would have a good time, but I had no idea how deeply both of us were about to be blessed.
We had been at the Cheshire house for only a few minutes when Katrina, Christa and their mom, Katie, told us through grins and giggles that Abbie's birthday was being celebrated too -- it was partially a surprise party for Abbie. I bit my lip to keep from crying. They had no idea the burden they had lifted from my shoulders!! And, moms don't usually get surprised by much, so this was a sweet surprise for me as well.
Abbie got to open presents, wear a princess hat, and blow out candles with the help of all the girls. Just typing about it now is making me weep. I could have never put such a wonderful day together! What gracious and generous friends we have!!
Since then, it seems that it's been one long celebration..there hasn't been a day that Abbie has not received a present. I'm concerned that she may conclude that six-year-olds are on a gift-a-day program! It's so fun now that she can really appreciate and enjoy her presents -- vanity must kick in around now because she is especially partial to the hair accessories and clothes.
Dr. Tennant arrived in Honolulu on Abbie's birthday, so I spent last Thursday - Sunday at his lectures, while my heroic husband held down the fort. A hero you say? Well, he booked me a hotel room on Friday night, where the conference was being held, so that I could sleep all night and be fresh in the morning while he was on Abbie watch all night. So, yes, "hero" in my book.
I learned SO much, yet again. I am hoping to update the "Abbie's Healing" portion of her website in the next several weeks to reflect what we are now doing and using. But, my hope was yet again fortified, and my resolve strengthened.
We started giving Abbie 1/2 tsp of Baking Soda in her overnight drip about 3 weeks ago because it is a powerful anti-fungal. (Why that matters will be in the "Abbie's Healing" update). It kicked her into a major healing crisis -- a nice way of saying good things blooming out of stinky circumstances. We have been getting much less sleep, as she goes through periods of time when she needs a lot of suctioning and oxygen. Fortunately, these periods are tied to the time of day, and Abbie (being part Swiss) is right on the dot. For example, at 8:45pm she's fine, cruising along on no oxygen, very comfortable. At 9:01 pm she crashes, needing up to 6 liters of oxygen and frequent suctioning, until at 11pm she settles down, comes completely off oxygen, and goes to sleep. The time of these periods coincides with the "high phase" of each of the 12 circuits in the body. Unfortunately for us, one of the circuits that has been quite active lately is the liver, which wakes from 1-3am. But, with each day, Abbie looks brighter, more beautiful (I admit my bias), with softer tone, better vision, and quicker responses. She about threw her neck out of joint nodding "no" the other day when Debbie asked if she was still five.
My birthday on 8/15 also brought a long anticipated present. Abbie's hyperbaric oxgyen chamber arrived two days early. She has been going in the chamber every day by herself. She is very proud of this, because for the 50 previous "dives" I have always gone in with her. We attach an oxygen line to a concentrator that puts out 10 liters/minute, which she receives through a non-rebreathing mask. The chamber is also connected to a compressor, which pressurizes it to 4psi (or 1.3 atmospheres). This is a little less pressure than the commercial chamber we've used here in Hon
olulu, but the convenience of having one at home makes it possible to have Abbie dive daily.
She often comes out of the chamber babbling, which is exciting. We are also noting changes in her tone and vision. I don't know how much is the chamber, the baking soda, or the recent addition of an iron supplement..I think probably a combination of all three. I am just thankful to have it, especially as we anticipate her surgery. I think diving will help her heal quickly afterwards, and aid in preventing secondary complications like infections.
Ray also gave me a very nice camera for my birthday. OK...well, he paid for it, and my professional-photographer sister helped me pick it (and the numerous accesories) out. Poor Ray:)! But, I am hoping that I will be able to better capture what Abbie looks like and how well she is doing. I think the web gallery is good evidence of the difference between my old camera (the b-day party pics) and the new one (the pics of Abbie alone). With the .mac gallery, I will try to post frequent pictures -- even the ones that are going to be less than beautiful, like Abbie in her cast, so that you can more closely follow her progress and more specifically pray for her as we come up to this challenging time ahead.
So much more has happened, that I must give short shrift to for the sake of my hands and your eyes, but God has been pouring out blessings and grace upon us and we are so thankful! As I type Abbie is at Kahala Mall for storytime with lots of other kids, the highlight of her week. The mall is a couple blocks from our house, so Abbie is officially a mall rat, often strolling over there twice a day. This is one reason her birthday celebration has carried on so long, because even a lady at Zale's gave her a present yesterday!
We are in a good place, relishing her smiles and happy disposition, looking forward to getting the surgery behind us and reaping the benefits of it. God truly is good..all the time!
Of course, the biggest event of the last couple of weeks was Abbie's 6th birthday. As for so many other moms in my situation, party planning is a tricky, and even painful proposition. We have a profound reason to celebrate, and yet it is sometimes difficult to keep the focus on what we do have rather than what we, and Abbie, are missing. So, that is my excuse for lagging in the party coordination department. I was hoping to get in the party mood by going with Abbie to a party for two of her friends, Katrina and Christa Cheshire, on 8/19. I knew Abbie would have a good time, but I had no idea how deeply both of us were about to be blessed.
We had been at the Cheshire house for only a few minutes when Katrina, Christa and their mom, Katie, told us through grins and giggles that Abbie's birthday was being celebrated too -- it was partially a surprise party for Abbie. I bit my lip to keep from crying. They had no idea the burden they had lifted from my shoulders!! And, moms don't usually get surprised by much, so this was a sweet surprise for me as well.
Abbie got to open presents, wear a princess hat, and blow out candles with the help of all the girls. Just typing about it now is making me weep. I could have never put such a wonderful day together! What gracious and generous friends we have!!
Since then, it seems that it's been one long celebration..there hasn't been a day that Abbie has not received a present. I'm concerned that she may conclude that six-year-olds are on a gift-a-day program! It's so fun now that she can really appreciate and enjoy her presents -- vanity must kick in around now because she is especially partial to the hair accessories and clothes.
Dr. Tennant arrived in Honolulu on Abbie's birthday, so I spent last Thursday - Sunday at his lectures, while my heroic husband held down the fort. A hero you say? Well, he booked me a hotel room on Friday night, where the conference was being held, so that I could sleep all night and be fresh in the morning while he was on Abbie watch all night. So, yes, "hero" in my book.
I learned SO much, yet again. I am hoping to update the "Abbie's Healing" portion of her website in the next several weeks to reflect what we are now doing and using. But, my hope was yet again fortified, and my resolve strengthened.
We started giving Abbie 1/2 tsp of Baking Soda in her overnight drip about 3 weeks ago because it is a powerful anti-fungal. (Why that matters will be in the "Abbie's Healing" update). It kicked her into a major healing crisis -- a nice way of saying good things blooming out of stinky circumstances. We have been getting much less sleep, as she goes through periods of time when she needs a lot of suctioning and oxygen. Fortunately, these periods are tied to the time of day, and Abbie (being part Swiss) is right on the dot. For example, at 8:45pm she's fine, cruising along on no oxygen, very comfortable. At 9:01 pm she crashes, needing up to 6 liters of oxygen and frequent suctioning, until at 11pm she settles down, comes completely off oxygen, and goes to sleep. The time of these periods coincides with the "high phase" of each of the 12 circuits in the body. Unfortunately for us, one of the circuits that has been quite active lately is the liver, which wakes from 1-3am. But, with each day, Abbie looks brighter, more beautiful (I admit my bias), with softer tone, better vision, and quicker responses. She about threw her neck out of joint nodding "no" the other day when Debbie asked if she was still five.
My birthday on 8/15 also brought a long anticipated present. Abbie's hyperbaric oxgyen chamber arrived two days early. She has been going in the chamber every day by herself. She is very proud of this, because for the 50 previous "dives" I have always gone in with her. We attach an oxygen line to a concentrator that puts out 10 liters/minute, which she receives through a non-rebreathing mask. The chamber is also connected to a compressor, which pressurizes it to 4psi (or 1.3 atmospheres). This is a little less pressure than the commercial chamber we've used here in Hon
olulu, but the convenience of having one at home makes it possible to have Abbie dive daily.She often comes out of the chamber babbling, which is exciting. We are also noting changes in her tone and vision. I don't know how much is the chamber, the baking soda, or the recent addition of an iron supplement..I think probably a combination of all three. I am just thankful to have it, especially as we anticipate her surgery. I think diving will help her heal quickly afterwards, and aid in preventing secondary complications like infections.
Ray also gave me a very nice camera for my birthday. OK...well, he paid for it, and my professional-photographer sister helped me pick it (and the numerous accesories) out. Poor Ray:)! But, I am hoping that I will be able to better capture what Abbie looks like and how well she is doing. I think the web gallery is good evidence of the difference between my old camera (the b-day party pics) and the new one (the pics of Abbie alone). With the .mac gallery, I will try to post frequent pictures -- even the ones that are going to be less than beautiful, like Abbie in her cast, so that you can more closely follow her progress and more specifically pray for her as we come up to this challenging time ahead.
So much more has happened, that I must give short shrift to for the sake of my hands and your eyes, but God has been pouring out blessings and grace upon us and we are so thankful! As I type Abbie is at Kahala Mall for storytime with lots of other kids, the highlight of her week. The mall is a couple blocks from our house, so Abbie is officially a mall rat, often strolling over there twice a day. This is one reason her birthday celebration has carried on so long, because even a lady at Zale's gave her a present yesterday!
We are in a good place, relishing her smiles and happy disposition, looking forward to getting the surgery behind us and reaping the benefits of it. God truly is good..all the time!
Tuesday, August 14, 2007
Becoming Real
Ray and I just returned from a long weekend in Oregon, where we attended my high school's 20 year reunion. I don't know about you, but my memories of high school are definitely a mixed-bag, and it was time I would not willingly repeat. So, I was curious to see if the cliques still thrived and the masks remained in full use.
What I found is that in twenty years' time we had all lost something: love or a marriage, a job, a dream or even a child. These losses broke our hearts, and rubbed us raw -- rubbed us until we became like the Velveteen Rabbit. I don't know if I met transformed hearts, or hearts freed by loss from masquerading, but it was a joy reconnecting now that we have all grown up and become real. I have to say that without exception the women were all more beautiful than the dreaded senior pictures on our nametags. It could be because we were no longer sporting those dreadful 80s hairdos, but really I think it's because we grew into ourselves.
What humbled me was how many of them said that they had been praying for Abbie...people who I hadn't seen since graduation! Of course, there was a short list of people I was truly hoping to see, one of whom was my buddy Mark. During our senior year I recall just a few times where we excused ourselves from Marine Biology, and went through the drive-through at McDonald's to order two waters. As I wandered through the high school party scene, and somewhat lost my way, Mark was there shining the light of Christ into my life with a good joke and Chicago playing on the radio.
As Ray and I talked to Mark and his wife, Tiffany, the brokenness of our hearts bridged the years as they spoke about watching their first son die at 2 months of heart complications. Knowing they were veterans of this same pain, we shared many details of Abbie's injury and recovery. At the end of the evening, Mark said, "I know it's hard to tell the story, but I want to really thank you for sharing it." 20 years melted away, and I could almost taste McDonald's water through a plastic straw.
I opened my email this morning to find a short note from Mark, who said he tried to post in the guestbook, which currently isn't working - so he sent his message via email.
"One of the many things that has changed in me in the twenty years since water at McD's is that my vision and practice of prayer has been confused and disoriented. But, I prayed for Abigail tonight and I am thanking God for a timely reunion with an old friend."
The treasure of true friendship is so often revealed when the storms blow away the sand -- yet another reason to praise God for the rain.
Whenever I return home from a few days away, I prep myself for the "reentry phase" with Abbie. It takes a couple days for me to slow back down to her speed and really reconnect with her. Often, it is a little hard on my heart as I realize, yet again, how different our life is and how far we have to go. This time, for the first time, there was no readjustment, just pure joy. She looks SO good, and is so bright and "with-it" that I just had to giggle.
Yesterday evening our friend who kept the twins during the weekend called to check in. He brought the kids to see Abbie on Saturday, and told Ray, "Man, she looked good." Ray responded with, "Yea, we know.." and he came back with something like, "No, Ray, I mean she looked REALLY GOOD, she was tracking with her eyes and everything.." How exciting to have our impressions validated by other sets of eyes!
Going away requires such a team effort on this end...to have the boys taken care of and taken to school, and to have Abbie cared for around the clock. We owe big thanks to the McDaniels, Infantes, Bosgras and Odas, as well as Debbie and Dayna. And then there is Genevieve...She stayed overnight with Abbie on Saturday night. Then, the nurse scheduled for Sunday called in sick, so Genevieve stayed all day until Debbie relieved her in the evening. The nursing agency offered to try to find another nurse, but Genevieve refused this offer saying she didn't want to leave Abbie with someone who didn't know her well enough. Did I already mention treasures revealed by storms...well, Genevieve is one of our gems!!
We'll try to get the guest book at the main site up again, but in the meantime feel free to post at this page...your comments are a treat to us!
What I found is that in twenty years' time we had all lost something: love or a marriage, a job, a dream or even a child. These losses broke our hearts, and rubbed us raw -- rubbed us until we became like the Velveteen Rabbit. I don't know if I met transformed hearts, or hearts freed by loss from masquerading, but it was a joy reconnecting now that we have all grown up and become real. I have to say that without exception the women were all more beautiful than the dreaded senior pictures on our nametags. It could be because we were no longer sporting those dreadful 80s hairdos, but really I think it's because we grew into ourselves.
What humbled me was how many of them said that they had been praying for Abbie...people who I hadn't seen since graduation! Of course, there was a short list of people I was truly hoping to see, one of whom was my buddy Mark. During our senior year I recall just a few times where we excused ourselves from Marine Biology, and went through the drive-through at McDonald's to order two waters. As I wandered through the high school party scene, and somewhat lost my way, Mark was there shining the light of Christ into my life with a good joke and Chicago playing on the radio.
As Ray and I talked to Mark and his wife, Tiffany, the brokenness of our hearts bridged the years as they spoke about watching their first son die at 2 months of heart complications. Knowing they were veterans of this same pain, we shared many details of Abbie's injury and recovery. At the end of the evening, Mark said, "I know it's hard to tell the story, but I want to really thank you for sharing it." 20 years melted away, and I could almost taste McDonald's water through a plastic straw.
I opened my email this morning to find a short note from Mark, who said he tried to post in the guestbook, which currently isn't working - so he sent his message via email.
"One of the many things that has changed in me in the twenty years since water at McD's is that my vision and practice of prayer has been confused and disoriented. But, I prayed for Abigail tonight and I am thanking God for a timely reunion with an old friend."
The treasure of true friendship is so often revealed when the storms blow away the sand -- yet another reason to praise God for the rain.
Whenever I return home from a few days away, I prep myself for the "reentry phase" with Abbie. It takes a couple days for me to slow back down to her speed and really reconnect with her. Often, it is a little hard on my heart as I realize, yet again, how different our life is and how far we have to go. This time, for the first time, there was no readjustment, just pure joy. She looks SO good, and is so bright and "with-it" that I just had to giggle.
Yesterday evening our friend who kept the twins during the weekend called to check in. He brought the kids to see Abbie on Saturday, and told Ray, "Man, she looked good." Ray responded with, "Yea, we know.." and he came back with something like, "No, Ray, I mean she looked REALLY GOOD, she was tracking with her eyes and everything.." How exciting to have our impressions validated by other sets of eyes!
Going away requires such a team effort on this end...to have the boys taken care of and taken to school, and to have Abbie cared for around the clock. We owe big thanks to the McDaniels, Infantes, Bosgras and Odas, as well as Debbie and Dayna. And then there is Genevieve...She stayed overnight with Abbie on Saturday night. Then, the nurse scheduled for Sunday called in sick, so Genevieve stayed all day until Debbie relieved her in the evening. The nursing agency offered to try to find another nurse, but Genevieve refused this offer saying she didn't want to leave Abbie with someone who didn't know her well enough. Did I already mention treasures revealed by storms...well, Genevieve is one of our gems!!
We'll try to get the guest book at the main site up again, but in the meantime feel free to post at this page...your comments are a treat to us!
Saturday, August 04, 2007
School Meeting
This Thursday we had our IEP (Individualized Education Plan) meeting at our neighborhood elementary school. It was Ray, me and 11 people from the school or school district. The process was...interesting. The PT who assessed Abbie was out of town, so the PT who came up with the goals and gave recommendations has never seen Abbie. She recommended 30 minutes per week of PT, which did not meet our expectations. We were able to get them to raise that to 60 minutes per week "for the initial phase."
That was kind of the flavor of the whole meeting...goals that were not appropriate (i.e. things that Abbie has been able to do for a long time), and just not a clear understanding of her needs. I know Abbie really wants to go to school, and we will continue this process by visiting Jefferson Elementary, which has an orthopedic unit specializing in complex needs kids. However, the therapists at the most recent meeting work at that school, so I don't know what we will see there that will stoke encouragement and confidence in me, but I am praying for something major or else we will have to find another option for Miss Abbie.
On Friday we visited the neurologist. I spoke to her privately first so that I could tell her about the upcoming surgery, as well as the "cortex override" conclusion by the orthopedic surgeon. When she reviewed the seizure activity log, there was a large cluster of them in mid-July. That was the week where Abbie was assessed by a different Dept. of Ed. person each day. She was stressed out, and it showed in her seizure activity. We are going back up to the original dose (5ml) of Trileptal at night, but staying at 4ml in the morning for now, so that we don't make her sleepy. Please pray this works so that we don't have to try other meds. I honestly think the seizures are part of the healing process, as things reconnect. Abbie used her switch very well to communicate during the appointment, which is such an improvement over her usual "evasion by sleeping" approach to the neurologist.
The twins started school this week, and I am thrilled to pieces about the teacher they will have this year...what a difference that will make! Chase started work at Zippy's on Friday. His conclusion after a summer that consisted mostly of lounging: "I've determined that it is much more difficult to stay vertical for 7 hours than it is to stay horizontal."
I've had beautiful days to walk and worship, and all is well here.
That was kind of the flavor of the whole meeting...goals that were not appropriate (i.e. things that Abbie has been able to do for a long time), and just not a clear understanding of her needs. I know Abbie really wants to go to school, and we will continue this process by visiting Jefferson Elementary, which has an orthopedic unit specializing in complex needs kids. However, the therapists at the most recent meeting work at that school, so I don't know what we will see there that will stoke encouragement and confidence in me, but I am praying for something major or else we will have to find another option for Miss Abbie.
On Friday we visited the neurologist. I spoke to her privately first so that I could tell her about the upcoming surgery, as well as the "cortex override" conclusion by the orthopedic surgeon. When she reviewed the seizure activity log, there was a large cluster of them in mid-July. That was the week where Abbie was assessed by a different Dept. of Ed. person each day. She was stressed out, and it showed in her seizure activity. We are going back up to the original dose (5ml) of Trileptal at night, but staying at 4ml in the morning for now, so that we don't make her sleepy. Please pray this works so that we don't have to try other meds. I honestly think the seizures are part of the healing process, as things reconnect. Abbie used her switch very well to communicate during the appointment, which is such an improvement over her usual "evasion by sleeping" approach to the neurologist.
The twins started school this week, and I am thrilled to pieces about the teacher they will have this year...what a difference that will make! Chase started work at Zippy's on Friday. His conclusion after a summer that consisted mostly of lounging: "I've determined that it is much more difficult to stay vertical for 7 hours than it is to stay horizontal."
I've had beautiful days to walk and worship, and all is well here.
Thursday, August 02, 2007
The Way Out
In my last posting I wrote that I was in an emotional freeze about Abbie's upcoming surgery. That strategy works well in daylight, but it was impossible to keep the cooling jets on while I slept. The night after we made the decision I woke up with tears on my pillow, having just had vivid, graphic dreams about the surgery. I knew that I should not be defeated by fear, and that we've walked this road with God long enough to have sustaining trust. But, the now-thawed emotions were just overwhelming, and I wasn't sure how to find my way back to a place of peace.
Fortunately, just a few days before, Ray had surprised me with a new iPod after the untimely demise of my last one. So, I went to iTunes to drown my sorrow with praise music. Once I got there I was stumped about what to download. I then recalled one particular song from Jim's celebration service that I really loved, so I pulled out the program, smiled at his picture and found the song and artist.
"Waters Gone By" by Shawn Lewis was a golden thread that led me to so many other restoring songs. I spent an hour downloading them, and then took off for a long walk with my new music.
Fortunately, just a few days before, Ray had surprised me with a new iPod after the untimely demise of my last one. So, I went to iTunes to drown my sorrow with praise music. Once I got there I was stumped about what to download. I then recalled one particular song from Jim's celebration service that I really loved, so I pulled out the program, smiled at his picture and found the song and artist.
"Waters Gone By" by Shawn Lewis was a golden thread that led me to so many other restoring songs. I spent an hour downloading them, and then took off for a long walk with my new music.
"You will lift your head without shame
You will firmly stand with no fear inside.
You will surely forget your troubles and pain,
Recalling them only as waters gone by."
Instead of my normal route, I felt compelled to go to the beach where I sat on a rock as far out in the water as I could get. Finally, I could cry aloud. When words came, I just said to God, "I can't stand the thought of making my daughter suffer, even though it's for her good." I could feel Him smile and heard, "I know exactly what you mean."
As the wind began to gust I looked out to a sacred spot near China Walls and was reminded that God always redeems our pain, always. The sunlight reflecting off the tide began at last to penetrate my soul.
My walk home was joyous as I soaked in the greens and blues of the trees, sky and sea. Worship was my way out of fear and dread. So, I am going to just soak myself in music in these next weeks since it can so often reach places that words alone cannot.
Today we scheduled Abbie's surgery for September 18. We have been trying to minimize talking about it around her, but she is so perceptive. Last night a dear friend was talking to Abbie, who was listening but not all that interested. When Kristin mentioned that her son also sees Dr. O, Abbie flipped her head quickly around to look right at her.
This month will be hectic as we do all the pre-op appointments and preparations. In a way I welcome that so we can stay focused more on what we have to do rather than how we feel. Please just pray for Abbie to get stronger and stronger each day so that she can be in the optimal condition going into the surgery.
As I walked home, listening to my new music, one song summed up my strategy for getting through these next few months. Actually, perhaps it should be my life strategy, if I can remember that I am just as dependent in times of ease as I am in times of distress.
"If I Stand"
There's more that rises in the morning than the sun
And more that shines in the night than just the moon
There's more than just this fire here that keeps me warm
In a shelter that is larger than this room.
There's a loyalty that's deeper than mere sentiment
And music higher than the songs that I can sing
Stuff of earth competes for the allegiance
I owe only to the Giver of all good things.
So if I stand
Let me stand on the promise
That You'll pull me through.
And if I can't
Let me fall on the grace
That first brought me to You.
So if I sing
Let me sing for the joy
That has borne in me these songs.
And if I weep
let it be as a man
who is longing for his home.
There's more that dances on the prairies than the wind.
And more that pulses in the ocean than the tide.
And there's a love that's fiercer than the love between friends
And more gentle than a mother's when her baby's at her side.
And there's a loyalty that's deeper than mere sentiment
And a music higher than the songs that I can sing.
Stuff of earth competes for the allegiance
I owe only to the Giver of all good things.
So if I stand
Let me stand on the promise
That You'll pull me through.
And if I can't
Let me fall on the grace
That first brought me to you.
And if I sing
Let me sing
for the joy that has borne in me these songs.
And if I weep
let it be as a man
who is longing for his home.
So if I stand, let stand on the promise that You'll pull me through.
And if I can't, let me fall on the the grace that first brought me to you."
---Jars of Clay
Monday, July 30, 2007
Shriner's
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!
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!
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."
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