Tomorrow is a day we will both celebrate and cry. Tomorrow is a day we embark on a journey that we hope will change the course of Alex's life. Tomorrow we will also celebrate Samuel's 5th birthday without him.
Anyone who has spoken to me over the last week can tell you that my emotions have been raw and close to the surface. I am sad. Sad for my best friend, sad for myself, sad for Buggy. We all miss Samuel. We all grieve. And right now it is just a little harder then it has been for a while. There is not a day that passes in our house when we don't talk about Samuel at some point. Alex longs for his best buddy daily. He so desparately misses having someone "who is just like him". Someone who went through the same experiences and who helped him through hard times. I miss the little snuggle bug who always crawled up in my lap and who begged me to lay with him (but only after Mommy had left the room). I miss that sweet voice calling my name.
But tomorrow, while sad, will also be a day of celebration. I do not for one minute find it a coincidence that Alex and I will fly to Stanford on Samuel's birthday. I wholeheartedly believe that Samuel is watching over Alex. As Missy has told me all week there is no place Samuel would rather have us tomorrow then someplace doing something to try and help Alex feel better. Alex has already been sure to let me know that we will be having dessert tomorrow and singing Happy Birthday to our Buddy.
The rest of the roller coaster has been in regards to Alex, his less then stellar health these days, and the hope this medication brings. I cannot begin to explain to others the emotions that come with being the mother of a child with Mito. Not only is it a disease that could take my childs life at any moment, but it is also a disease that has no way to fight it. With cancer you are given odds and a plan of attack. With mito you have to sit back and watch your loved one fade away while you do nothing. It is a helpless feeling. Enter EPI-743...This medication may do nothing for Alex or it could change everything. It is so hard to not be hopeful and so scary to let our hopes rise and possibly have them dashed. As I have watched Alex struggle over the last 2 months, I have worried. He doesn't have his usual spunk, he is losing weight, he doesn't feel good. And so I hope, I hope for a fighting chance. A chance that starts tomorrow...
Please pray...pray for my emotions, for Buggy's safety (specifically no allergic reaction), for our travel.
Thank you for being there to celebrate our joys and hold us through the sadness.