I think this may be the longest lapse in updates ever. This summer has passed in a blur of happy, sad, plans obliterated and then reconstructed, big leaps forward and slippery slides backward. I can't believe the end of August is near.
The bottom line, after so many weeks (months) is that Abbie is doing well. She is growing, healthy, happy and eager to learn. As she matures, there are times I sense she is processing her differences and limitations in new and deeper ways, and on some days I can see fatigue in her eyes. But, ever the fighter, those days and thoughts don't last long for her.
A couple of developments that have long been in the works:
Abbie will be getting the bestest, biggest, shiniest, fanciest 10th birthday present I could imagine...a week late. Her power wheelchair, with all the bells and whistles arrives next week! We will spend several hours adjusting it to fit her perfectly, and then she will have the chance to gain some independence. I can barely grasp how much this may change her life.
In addition to the obvious movements forward, backward and turning, the chair will allow her to control the tilt, recline, footrest position and elevation of the chair. I simply cannot wait until she "tells" someone she is done listening to them by turning around. Let the sass come forth, I say (in small, measured increments:)
Her therapy team has been working on getting her this chair for almost a year now...I think it's safe to say there may be a few tears shed when Abbie rolls away in it.
And then, on the ABR front:
Recall that ABR is the therapy platform we've learned about that really does provide hope for physical recovery for brain injury survivors. But, also recall that we would have had to travel to Montreal for a week, and then the mainland US three more times during the first year of ABR. The costs and logistics of this prompted me to explore creating an ABR project in Hawaii.
The challenge was that there are a limited number of ABR "trainers" in the world, equipped to do the in-depth assessments of the child, and training of the families. Since meeting the ABR inventor, Leonid Blyum, in April we have been kicking around ideas about how to pursue a Hawaii project. I made no secret of the fact I wanted a trainer full-time in Hawaii but admitted I knew this may be an impossibility, given the constrains of the trainer corps.
Earlier this month I made contact with a trainer who: #1. has the passion, vision, skills and abilities that match up with my vision for the project, #2 is willing to move to Hawaii, and (most important) #3, has a wife who is willing to move to Hawaii.
I am working with key stakeholders in the community to ascertain where exactly he will work, how the funding will flow, and other details. But, it is my deep hope, and firm belief, that we will look forward to welcoming the trainer and his family to Hawaii early in 2012.
It is also my conviction that, once this project blossoms, the work that is done will change the course of the lives of people with brain injuries and their families not only in Hawaii but around the world. I am finding that as long as you don't give up, even when there doesn't seem apparent reasons not to do so, hope eventually transforms into something tangible. And, sometimes it is even better than you'd imagined.
Please continue to pray for the success of the Hawaii ABR project. I told the trainer that last November, I first became aware of Leonid's work and prayed for a way to get him to Hawaii. Six months later, he came. In March I began praying for a trainer to come to Hawaii. Five months later, I was in touch with one willing to move to Hawaii. To me these are exciting answers to prayer....but what I really long for is the "Big Answer", for ABR to come to Hawaii and start changing the bodies of children and the lives of families.
Tonight we had a special family dinner to celebrate Abbie's last day of being 9. We shared memories of the day she was born, which included RJ's announcement to the neighbors that "We have a grill!', and each boy now claiming he was positive she was a girl when I quizzed them at the bedside before we revealed whether they had a brother or a sister.
Just before dinner I prayed with thanksgiving for God bringing Abbie to our family, and then remaining with her every day since. Truly, I know He has....and in the end, that is all that matters.