I used to be on the other end of these situations; feeling a mixture of complete confusion, anger, sadness, and slight relief that it was not my child or experience. Now, I find myself in the midst of it all. At the center of IFSPs, routine (sometimes not) hospitalizations, a schedule worked around medications, and of course the unknown. Yet, unlike I would have assumed I would feel, I have not (yet) found myself asking "why me?", or "what did I do to deserve this?" I often wonder if I will as part of this process, or if I really am oddly at peace with this outcome.
I know that G-d had a purpose when Sonya was conceived. I know she has a responsibility far greater than us average Janes/Joes. I actually have this odd excitement when I think how special Sonya must be to have been chosen to bear such a responsibility as she has been given. How lucky we are that we were chosen to be her family.
You hear this a lot from families whose children have debilitating and or terminal illnesses, and I'm sure some (if not all) of you are like how I used to be when I heard these statements, and are thinking, "Do these people really feel blessed? Are they just saying it?"
I have definitely had feelings of sadness that Sonya was chosen to be part of such a rare diagnosis. I feel sad that she "won't be like everyone else", but when she is older and we ask her, I bet she will tell us she is really happy. I bet she will tell us she couldn't imagine being like the majority. She will probably have moments she wishes her life was not so difficult, but don't we all? Don't we all wish that at least for a day we could be someone else? The popular kid in school, the Olympian, the smartest kid in class, the president of the United States, the CEO of a company, the head of a Fortune 500 company? Don't we all wonder what it would be like to not be ourselves?
It would be dishonest to tell you that I don't wish I knew the purpose behind "why Sonya?" It wouldn't be truthful to say I don't sometimes have the "I wonder what it's like to have four genetically unaltered kiddos" feeling while scrolling through Facebook. But then I look at Sonya and I love all the lessons she has taught me already in her short time with our family. I love how much I am going to learn from her. I love how much I am going to grow because of her, how much her siblings will be better because of her.
I do whole heartedly believe G-d knows what he is doing. We may not understand the reasoning because we aren't privy to flipping the pages of the book to the last chapter to find out the ending. We just get to be characters that help make the story come to life, one chapter at a time. Maybe one day we will know what G-d's purpose was, but then ask yourself this; would it really even matter?