Posted by J.L. BOSTICK at 10:50 PM
Saturday, September 4, 2010
Tonight I sat down with my husband to watch a movie I had seen before but he had not. I knew this was going to be a hard and sad experience for both of us because I knew what I went through emotionally the first time. But for some reason the second was even harder. Perhaps it was because I shared the company of someone who understood what I was feeling, someone who knows. All I know is that this movie made me cry the second time more than I have ever cried during a movie and I am not an easy to cry in a movie kind of girl. I am tough shelled, strong and can put up a front like nobody you have ever seen. This movie destroys all of my strengths and pulls my weakness to the surface.
For those of you who have never heard of this movie it stars Brendan Frasier and Harrison Ford. It is a movie about a family whose children suffer a rare fatal illness with no cure. It is a movie about faith and a family not willing to settle for clinical fate but fight for hope. Through all of their fighting they end up finding a "cure" for their children's illness. At least it is a cure for "some" of their children's illness, a cure that will give them a life expectancy of indefinite instead of a year or two.
For those of you who know us, you know how close my daughters illness is to a cure, at least the "blindness" part is. Some of you know of China and the incredible advances being done with Stem Cell therapy and how hard we fought but failed to get her there for the procedure. This was not a definite cure, no child has seen 100% or even 1/4 percent vision gain but almost all have seen some. Even a 1/8 vision gain would be a miracle to us.
Some of you might not realize that Miriam would still have seizures, we would still have that tiny bit of fear we might wake up one day and she not be on this earth due to the possibility of "sudden death" associated with the illness. You might not realize that we still risk her growth stopping before our eyes and her being a little person. There are so many "other" possibilities we deal with every day that even Beike Bio-tech in all their amazing glory could not cure. And oh how we long for a cure. A total cure that would give our baby a pituitary gland so she wouldn't have to take 7 medications/steroids a day (which eventually she will have to take, she takes 4 now) and an optic nerve so she could see. This family and the illness they fought are our hope. I have never in my life watched a movie that touched me as much as this one does. I keep their journey in my heart and know that no matter what the future brings I know there will always be a possibility that our baby can have a normal life. All it takes is the right mind, the right person to write down the perfect mathematical equation at the perfect time. A few sets of numbers that match our daughters genetic makeup and all our worries are gone. This is my hope, now watch the movie to find yours.