It almost seems a bit unreal that we leave Wednesday.
May 2008- I remember us going to the Dr for all the problems Wesley was having. I remember one Dr. telling us he was having sinus issues and we needed to see a sinus Dr. After hearing that we went home that night with sinuses on our mind. Sinuses; great. He will probably have to have surgery for his sinuses, he will be down for a week, what will this cost us. What a pain! How selfish were we? After going to the sinus Dr. we hear the shock that nothing could had prepared us for. A Brain defect has been found on his MRI. This has nothing to do with sinuses, infact much worse.
We left thinking, oh God, after all we said. We would give anything for it to had just been sinuses. Sinus surgery, who cares what it cost.
But, a brain defect nothing could had prepared us. And, ever since that day, our lives have changed. Everything seemed to get worse day after day. This disease has no cure, the older he gets the worse he will get, your children have a high chance of having this disease, etc.
The person Wesley was, will never be the same. Through this all we have struggled with our faith and we have always came back to this thought; "God chose Wesley to have this disease and we will PRAISE the one that chose Wesley to go down this road".
I go into this trip with many mixed emotions. We know that this disease has no CURE. I find myself asking God; should I even be praying for Wesley to be healed? Or should I pray for peace with the fact that Wesley will never be healed? I am not for sure. But, I believe that until I have went through EVER option to at least get Wesley to where he lives the best life he can then I have not done what I am here to do. New York is another step. I am not for sure that I am ready to hear, " nothing else can be done". Thats what is so scary. Not knowing.
I have accepted the reality that Wesley will never be the same and changes will have to be made. I truly believe that God chose Wesley to have this disease for a reason.
In 48 hours we will be in New York. If I do not update before, I will update as soon as we get there and probably pretty often. I am going to have a lot of time on my hands. Wesley will be in testing most of the day on Thrusday. :)