Thursday, December 28, 2006

John 1:5

Christmas flew by in a joyous blur, but there were some profound moments and lasting memories.

We went to church on Christmas Eve morning, and as we sang those familiar songs I realized that I am now living in a much different place, a different "day". Long ago, around the time of the first Easter after Abbie's accident I wrote about feeling "stuck in my Saturday", the day between the suffering and the resurrection. Still overwhelmed by grief, each day challenged me to take one more step towards Sunday, even though it seemed so far away.

Last weekend my heart rejoiced with the understanding that I am now living in my own Christmas Eve. The hope is reaching its fullness, and I am deeply assured that even more than we have dreamed is about to come to fruition. Like Mary, there are things I cannot explain right now, and some that I don't even understand yet, but I wait in the stillness of the night with a quiet smile, knowing...

My parents were with us for a week, and it was encouraging to see them note changes in Abbie even during the short period they were here. Abbie would think the most important thing to tell you is that she lost her second front tooth the day after Christmas. I joked with her that she is keeping us busy with all the nighttime visitors, Santa Claus, the Tooth Fairy...that elicited a big grin from her. She clutched her two shiny quarters all day today, even during her bath. Her vision continues to improve, and the pupils that have been hyperdilated since her injury now appear normal much of the time. That size difference has a big effect not only on how well she sees but on how good she looks, making her look more "there". Her upper lip retracted quite a bit in the months after her injury, but it is now coming back down into a normal position, which will eventually make eating and talking much easier for her.

One of Abbie's biggest concerns right now is being left out or left behind. There are times when we take the boys to do things and leave her at home with a nurse, sometimes for health reasons and sometimes for logistical reasons. This is starting to be increasingly aggravating to her, and we are trying to include her in as many outings as possible. I am happy to see this desire become more pronounced and strongly communicated. She now does exceptionally well when we take her out, unless it's to a movie theater. We went to lunch on Chase's birthday (12/23) and after a brief catnap she awoke to show off her dimple as she grinned at each of us. It was the first time I saw her independently engage to the point of smiling without someone being in her face or physically entertaining her. Another step...

At this time of year, like most of you probably, I find myself reflecting on my greatest treasures, which are all people. I am overwhelmed that God has blessed me with such a wonderful man to share my life with, and that he has given us five amazing, unique children. Every day is an adventure! I am also a proud auntie to the smartest boy in Seattle, Cooper and his budding sidekick, Oscar. I knew my sister was worth keeping around, even though I tried to give her away when she was born. I am profoundly thankful for all those who've joined "Abbie's Team" - the doctors, nurses, therapists, and other professionals. They inspire me with their wholehearted dedication and love. I am forever indebted to the other families of brain injury survivors who I've met, corresponded with, or followed via the internet. You have been my guides, comrades, encouragers, strong shoulders, and knowing hearts. And, I will be forever humbled by all of you who have joined us in this journey (even you lurkers out there who've never posted...I still feel your prayers!) You have been many things to us - our lifeboat, a rescue line, the voice that says, "Yes, you can" when we think otherwise -- you have dreamed the dream with us, and we will never be able to thank you enough.

John 1:5 says, "And the Light shines on in the darkness, for the darkness has never overpowered it." (AMP) This Christmas a new Light is dawning in our family, and it is illuminating a whole new day. Joy comes in the morning!

Monday, December 18, 2006

A New Stage?

Something funny happened this afternoon that is prompting me to write the second update of the day. Actually, it began last Friday when I attempted to take Abbie and the boys to the movies. The boys wanted to see "Eragon" which I knew would be too loud for Abbie, so I decided to see "The Nativity Story", figuring that if I did have to step out with Abbie for a few minutes, I was at least familiar with the storyline and could jump back in mid-movie and not be lost.'s a good thing I already know the story, and I'm sure the movie was great, but we only saw 1 minute of it.

Abbie was unusually fussy, and nothing was helping. She was trying to move and had a look of intense frustration on her face. I thought perhaps she was confused about why her body was not responding to her wishes, so I once again explained to her what happened -- she got an owie in her head, but she was safe now and with Mommy. I told her that she is getting better every day and just needs to keep talking to her body. I used the most soothing voice I could muster, and the explanation stopped the fussing. But, that was just one data point, and it wasn't the first time I'd had to tell Abbie the story of her Re-Birthday.

Over the weekend, as I mentioned, we saw big differences in her vision, but we also saw big changes in her muscle tone, and not for the better. She was extremely tight, uncomfortably so, for much of the weekend. This tone continued today in her therapy session, and prevented us from getting her into as good of a crawling position as we normally do.

After therapy we brought her home, and the fussing commenced. Not "I'm a little upset" type stuff, but a pretty insistent, "I'm ticked off" effort. Nothing we tried helped, and she wouldn't use her switch to tell us if something hurt. I stepped out of the room to see Ray and the boys off, and returned to hear Debbie say Abbie wanted to go somewhere, but she couldn't tell where. Sure enough, I heard "Go, go, go" from Abbie, but couldn't get her to tell me with her switch where she wanted to go. Out of desperation I finally said, "Abbie, is this just a good, old-fashioned temper tantrum?" She hit her switch so fast and hard that her hand flew off the bed.

Debbie and I laughed so hard and thought, "Just like Abbie! At least she's honest!" But, the more I thought about it, the more the pieces began to fit together to form a picture of a new stage of recovery for Abbie. She is just plain mad about not being able to move, about being left behind so often, about being bored much of the time. She can't express this emotion overtly except through her fussing right now, but this stage is part of the normal brain injury recovery process. Using her eyes more, being mad, and the changes in muscle tone make me think she is climbing to new places in her journey, and that is thrilling!

Why would high muscle tone make me think that? Because of something called "Hering's Law" which says that before you get better you get worse as you regress back through the injury to reach healing. We always expected that as Abbie recovered we would hit points with her tone like this, because there were stages early on where her tone was very high and required medication. All in all, we are seeing outward signs of changes within Abbie's brain, and we are rejoicing.

Just wanted to share Abbie's Temper Tantrum Story before it got lost in the craziness of the week to come. Blessings!

The Beginnings of Hope

I apologize for the lack of updates lately, Ray was in Orlando last week which made it an interesting and hectic time around here. I was a little nervous about how I was going to get Abbie and four sleepy brothers up, dressed, and in the van by 6:45am each morning to get the boys to school. It ended up being quite a blessing! Abbie really enjoyed the early morning activity, and relished taking the boys to school.

She has been doing really well lately. This past weekend Ray and I both noted how much more quickly she was using her eyes. I laid her in bed with him on Saturday, and as soon as he started talking to her she turned her head and eyes right to him -- so quickly that it shocked both of us. She also was really looking at books, brothers and other fun things. Her therapists both commented on her eyes this morning before I'd even had a chance to tell them about the weekend.

This biggest news, however, is that after 18 months of working on it, The Hope Project is slated to start the first week in February!! We are fortunate to be doing this in partnership with the University of Hawaii School of Speech and Language. They have space we can use, they are going to provide speech therapists for the kids, and in essence are making our first steps possible. I was thrilled to tell Abbie that she is going to be starting "school" after the holidays, right down the street from her brothers -- her flashing eyes and dancing eyebrows told me my excitement isn't solitary. Initially, it will be 2-3 mornings a week for 3 hours. The intensive, personalized interaction and stimulation will be terrific for her, and I am anxious to see how she will respond to it.

Now that we have our first foot on the ground, with our eyes fixed on a tremendous vision, I want to invite you to join us in this journey. Beginnings are hard for a non-profit organization, because most funding sources, both public and private, want to see some sort of track record before granting support. So, I am praying that you, Abbie's Angels, will help us make this part of Abbie's mission a reality. Financial contributions of any size would be so appreciated, and can be sent to:

Hope Project Hawaii
c/o PO Box 235201
Honolulu, HI 96823

Each Christmas lately for the adults in our family we've just been supporting worthy causes in their name. Last year we "bought" llamas for families in South America. This year, they are going to be receiving a piece of Hope. As Christmas nears, I pray you would also consider this in your family. I do need to let you know, however, that we do not currently have official 501 (c)(3) status, so if you want to ensure your donation will be tax deductible, please wait until after January 1st.

If you live on O'ahu and are interested in getting involved in a practical way, we could really use volunteers with OT or PT qualifications, or other therapeutic backgrounds.

Initially, funds donated will be used to purchase OT and PT support, basic equipment for OT, PT, Sensory, art, music, and supplies like books. Eventually, we are hoping to hire a uniquely trained special educator who will provide Conductive Education for the first time in Hawaii on an ongoing basis. CE is Hungarian in origin, and is very successful at getting motor-challenged kids out of wheelchairs and up walking. There is much more to our vision, but as Abbie's pediatrician reminded me last week , "A journey of a thousand miles begins with one step."

We look forward to my parents arriving tomorrow, to experience sun, warmth, and power, leaving the currently Stone Age Northwest behind. We are praying for those of you enduring the aftermath of the storm.

As the "shopping days" dwindle, I hope that the light of the Christmas grows in your heart. In reflecting on the first Christmas I realize that there was also a lot of hub-bub preceding that event. After giving birth to five children, I know that labor is not a "silent night", and I wasn't even surrounded by livestock. But, after the birth pains, I think stillness descended and wonder abounded. I hope that each of us can experience that part of Christmas too!

Wednesday, December 06, 2006

A Golden Billboard

With so many holiday events this month, I usually pick and choose which ones I will attend with Ray. Earlier this week he mentioned that Kapiolani, the Women's and Children's Hospital, would be hosting a tree-trimming ceremony tonight. I was confused since the hospital had a tree-lighting ceremony last week, and I was about to claim "overkill!!" when he explained why there were two ceremonies, and what made this one special.

Tonight's ceremony was scheduled at the church next door to the hospital, Central Union, and was concieved to allow the families of children who died at Kapiolani to gather and honor the memories of their children. I started crying on the phone as Ray described the event, knowing that it would be painful to be there, but also knowing that I must go.

Central Union church is special to me because its steeple always remains lit. During my all-night PICU vigils, the church's physical structure reminded me of Christ's presence with me, while the steeple light reassured me of His love. But, although I sometimes escaped to the grounds of the church to pray, I'd never actually been inside. Until tonight...

It is by far the most beautiful church I've seen in Hawaii, with soaring ceilings and pillars. As Ray and I entered we were introduced to the pastor, and I'd just begun to thank him for always keeping the steeple light on when I caught my first glance of the front of the church. I stopped speaking mid-sentence and tears filled my eyes. There, above the huge white cross were gold letters that had to be five feet tall. They simpy said "Love Never Faileth." The same words, in fancier syntax, that I whisper to Abbie...Love Always Wins!

I couldn't believe that inside the church which had given me so much comfort were the three words I've clung to for so long. I felt like I had been ushered in to the very heart of God and had found what I knew was there all along. My hope isn't reckless and my dreams aren't delusional, because Love is a Person, and He never fails. So many times I have prayed for a "billboard answer" from we keep Abbie on life-support or let her go? Do we pursue this therapy or that one? How do we best love and support the boys through all this? I've never gotten a neon sign, but tonight I received the only billboard I will ever need, because it answers the deepest questions of my heart.

Those three words brought me great comfort during the ceremony, which was heartbreaking. I almost felt like an intruder because, although we know some of the pain, we have never had to bury a child. Each family went forward, read their child's (or children's) name, a bell was rung, and then they hung an ornament. It seemed to go on and on, until three trees were covered with special tokens of love mixed with grief. All I could think was, "Thank you God, that Abbie is not just a name on a paper and a ring of a bell." No matter how hard the days get, or how my heart despairs at times, I will never forget the weeping parents in the pews tonight...their tears renewed a right perspective for me. Each day with Abbie is a precious gift.

Quite a ways through the ceremony we heard a name we recognized, one which we hadn't heard in over two years. Justicia was a very special little girl, born with a face that looked very different from other little girls because her bones were fused together. She was in the PICU the same time as Abbie, and initially we gasped when we saw her. But, as the days passed a funny thing happened...she transformed into the most beautiful girl. Actually it was our hearts that were transformed as we looked at her through God's eyes. She died while Abbie was still in Bed Space 14, and being consumed with Abbie's care at the time, I didn't get to say good-bye to her mother. I was so blessed to catch up with her after the ceremony, and initially was too emotional to even speak, so Ray had to explain who we were and why we were so glad to see her. Justicia had a profound impact on us as we were just beginning life with a special needs daughter, and tonight was a very sweet tying up of loose ends.

As for our Abbie-girl...she had a check-up yesterday and now weighs 41 pounds and is 42 inches long..right at about the 50th percentile for each. I am pleased that she is doing well proportionally, and is healthy overall. Today she lost her left front tooth, so now she really looks like a pirate when she grins. Actually, what it makes her look like is a much older girl. This afternoon I was sad about that, but after the tree-trimming ceremony I am just thankful that she is getting to lose teeth!

We had a great OT session yesterday. We focused on hand/arm movements, choice-making and vision...sounds boring for a five-year old until I tell you that we accomplished all that by playing dress-up with a magnetic doll. Abbie got to choose what to put on her, and always ended up with coordinated outfits, right down to the shoes. It is easier for her to look to the right, so after a few choices, Patty put the shoes which would obviously be more appealing to Abbie (pink slippers with polka dots) on her left side. She chose them! We then asked her if they were purple, and she immediately nodded her head "no". Patty was also making Abbie help put the pieces on the doll. I asked her if she was doing the whole movement for Abbie and she said that before she helps, she waits to feel some sort of initiation. This made me very happy because while Abbie is not yet able to do the whole movement herself, she definately understands what she is being asked to do and what parts of her body she needs to use to accomplish the task. I feel like as long as we have the building blocks there is nothing she will not eventually be able to do herself. There is not one area where we have absolutely nothing to work with. I even confirmed with Patty what she was seeing as far as vision, by asking, "If I told a doctor that her therapists feel she definately has some vision at least some of the time would you agree with that?" and she said she would, especially after observing Abbie make such intentional fashion choices.

So, all in all a good week. The Bible says that hope deferred makes the heart sick, and I can tell you I know the truth of that from experience now. I have been struggling a bit, just having another holiday season with Abbie in a wheelchair, unable to partake of so many things that make this time of year special. Tonight, I realized however, that I've been focusing on the wrong part of that thought, the "unable" clause loomed large and obscured the cause for rejoicing, "another holiday" with Abbie! What the families I met tonight wouldn't give to be able to say that.

Saturday, December 02, 2006

Marathon Update, Round Two

The flu has kept me from the computer for the last week. I have not been this sick since before Abbie was even a blip on an ultrasound screen. But, the worst is definately past and it's time to catch up.

Thursday, 11/23:
We had a nice quiet Thanksgiving at home. Debbie came and spent the day with us, which allowed me to spend most of the day in bed. Abbie enjoyed tastes of mashed potatoes, mashed sweet potatoes, and cranberry sauce.

Friday, 11/24:
Abbie just could not be satisfied today. She would demand to be put on the potty, and then cry to get off. She would want to lay on her side, and then complain about that. Debbie endured several hours of trying to make her happy before I finally realized that perhaps she was feeling the same way I was feeling...achy and miserable. We gave her some Motrin to help with the symptoms, and she calmed down.

In the afternoon Ray took the boys to the UH football team practice. My HOPE Project partner, Ellie, is married to the defensive line coach, so she coordinated this special treat. As the team was coming out to stretch and warm up Coach Jeff took the boys onto the practice field where they got to meet Colt Brennan, Leonard Peters, Ikaika Alama-Francis, Davone Bess and others. In other words, it was Warrior Fan Heaven. The players were so kind, and really took time to talk with the boys, confirming that they are the type of team I thought they were.

Saturday, 11/25

A dreaded garage sale started our wasn't the sale we dreaded so much, it was the garage. But, we conquered the cave of accumulated junk, made a few bucks and enjoyed a unique study of human behavior. Thankfully we had a rare day of Saturday nursing to help with Abbie during our sale, and afterwards when I collapsed into bed to rest up for our important evening date. She still wasn't feeling great, but was much happier than she was on Friday. Her muscle tone has been a little higher, but I've not been working with her as much to protect her from my germs and because I simply can't at this point.

Purdue was in town to play the Warriors, and even with most of my voice gone I still wanted to cheer for the guys, especially after how kind they were to the boys the day before. Like a lot of people, I find many metaphors for life on the football field. This night was no exception.

We dominated the first half and went into the lockerroom up 17-0. As the third quarter started we looked forward to more of the same, leading to another lopsided result, customary for this season. It didn't take long to begin wondering where the team that played the first half went. Everything went wrong, the spark seemed gone, and soon enough we were trailing. I thought of our life "before" and how when everything is going along smoothly, it's easy to project that same ease into the assume things will continue as they are forever.

When the wheels fall off there are two choices as the wagon skids on the ground...put 'em back on and get going, or sit in the motionless wagon as you feel the momentum fade and bemoan your fate. In games, it's all about momentum, and when you lose it you have to determine whether you have the strength to grab it back or whether your fate is going to be dictated to you. There are many days I feel the sparks as our wagon scrapes the ground...the systems don't work, I get sick, life throws curveballs...and there are some days I wonder whether we can yet again drag ourselves out of the wagon, put the wheels back on and get going again.

I watched UH face the same choice, and they responded by gathering themselves together and coming back for one of the most exciting wins ever. Games like that are sickening to watch, but are fun when they are over. It may sound overly sentimental, but from their example I gather strength.

As the game drew to a close, Ellie came and grabbed the boys so she could take them down on the the field. At some point down there Kyle remembered his cell phone has a camera, so he got a picture of himself with his hero, Ikaika Alama-Francis, and got one of Leonard Peters flanked by the twins. I was again touched by the hearts of the players, who had just finished a demanding, emotional game, yet stayed on the field for a long time signing and taking pictures. After we finally got the boys back we got the breathless "first-person" reports about the players. They smiled broadly as they asked me to guess what Davone Bess's eyeblack said...I couldn't imagine...finally they said in unison..."One eye said 'Jesus' and one eye said 'Christ'!" As a mom I rejoice when the people my children admire turn out to be admirable people!

Walking along, talking about how special it was to meet the players I said, "Boys, this is your sister blessing your lives." Chase and Kyle understood immediately, but the twins questioned me. I said, "If Abbie hadn't gotten hurt we never would've met Ellie, so we wouldn't know Coach Jeff, and you never would've gotten a chance to be with "the boys" yesterday and today. This is an Abbie-blessing." They agreed, but then RJ said, "Actually, Mom. Abbie started blessing our lives the day she was born." Amen!

Sunday 11/26:

I was so incredibly sick today that we even had to miss the memorial service for Everett McDaniel, which broke my heart. Ray and the big boys took good care of Abbie all day.

Ray did pull up one article on the football game that caught my attention. In it Colt Brennan said something to the effect that the game did not go to the team that most believed it could win, the game went to the team that loved each other the most. Then I knew...the reason I love that team so much is that they believe the same thing that I have been whispering in Abbie's ear all these many months..."Love Always Wins!"

Monday and Tuesday, 11/27-28

I am still so sick, and Debbie is out sick as well, which makes for interesting days. I am doing the best I can, and Abbie and I are enjoying lots of quiet time together.

I was in bed resting in the evening watching Pastor Wayne Cordiero give a message that really clicked with me. It was about appropriating God's grace in your life. I didn't take written notes, but the gist of it was three steps:

1. Humble it often. I seem to do this naturally since I normally can't walk down a sidewalk without tripping. Just when I am feeling put together and on top of things...splat, I am down on the ground. But more than that, I think being humble is just keeping an accurate perspetive of ourselves in relation to God and other people, and seeking always to have a servant heart.

2. Repent Often. This is the point that really changed the way I think about things. When I hear the word "repent" I think of big, heavy prayers, spiritual self-flagellation, and huge commitments to changes in behavior. Pastor Wayne used the Greek roots of "repent" to illustrate that all God is calling us to do is change our mind. Simple as that. When you find yourself thinking wrong, like "That guy is an idiot!", you just catch yourself and readjust your thinking. For me, I need to repent of despair and disillusionment as often as anything. I have to "change my mind" from believing what I see and hear to believing what God has said and promised. Repentance has now become an almost continual exercise for me, and I am finding that as I take responsibility for "changing my mind" to become more like Christ's, peace abounds.

3. Learn to strengthen yourself in the Lord. There won't always be someone to encourage you. You won't always get a word from someone when you need it. You have to build an independent relationship you can rely on. I have found this to be so true. Even though we have received more support than anyone else I've ever talked to, there are still moments in the middle of the night when I can feel alone unless I turn to the Lord in that aloneness and learn to plead my case in my own words, learn to appropriate His promises in my own faith, and learn to rest in His provision alone.

Thursday, 11/30

Finally able to get Abbie back to therapy today. We'd planned to use the tilt table the previous Friday, but I was too sick to go. We also missed PT/OT on Monday for the same reason. It's been a while since we had Abbie up on the table, so we wanted to spend some time stretching her feet and ankles. The results of the stretching were not impressive, and I was apprehensive about what we were going to see once we had her bearing weight. Silly Mommy, I should know by now that Abbie doesn't like prep work, she just like the real thing. When we got her up her heel came down nicely, the alignment of her feet was good, and she was much more relaxed than we expected. She also stood for a longer time than we had expected. All in all, a good session!

Friday, 12/1

Our last speech group session for the semester. Since the group is run by UH Master's students, we will be on a break until the end of January. Abbie wasn't as interested in participating today, but the students were still so effusive about how far she has come and and well she is doing. Since the group will not be meeting for a couple months I am probably going to take Abbie to private speech therapy sessions in the interim.

Friday evening brought the Christmas party at the Children's hospital. I visited with most of Abbie's physicians, and they were each so positive and encouraging. Her ENT said, "It will not surprise me at all to see her walking around one day." How blessed we are to be surrounded with exceptional professionals!

Saturday, 12/2

I'm almost all better, Abbie is doing well, and we are looking forward to the Oregon State game tonight. Having been raised by a "Beaver Believer" this is a big night for me. It's been fun to tease back and forth with my parents this week, and at this point I am praying the team will give me bragging rights for the whole coming year!

We have transitioned Abbie from five feeds a day to four, which has given us more flexibility during the day. The next project is to fit the fluid from the overnight drip into the daily schedule so that we can ditch the feeding pump at night.

One more note: Dr. Tennant is coming back to Honolulu, Feb 15-17. There will be a free informational lecture on the night of 2/15, while 2/16-17 will be the Biomodulator training seminar. You know what I think....GO! for more information.

Blessings and GO WARRIORS!