Friday, January 21, 2011
Bad Start of the Year for SMA Families
I found out today about another SMA child earning her wings two days ago. It seemed like there were so many who passed just this month. The fact that Kaitlyn was almost 9 years old is too painful for me. These are my honest feelings and thoughts about Joseph and SMA: I want Joseph to live a long happy life. But when I read about the physical pain that SMA individuals have as they get older and all the medical issues that they develop, I think that I don't want that for him. Even now, when I see the things that Joseph misses out on, and those things that he cannot do but want so much to do, my heart breaks and I pray that Joseph will be protected from feeling frustrated and depressed from knowing that SMA has robbed him of so many things and possible friendships. Every holiday or special occasion, there is always that silent fear that what if this would be our last time together. Our life revolves around Joseph so much that we can't bear to think of the worst. And yet as I have these thoughts swirling in my neurotic head, I clearly remember what Joseph asked me one day last week. Out of the blue, he asked: Who will take care of me if you and Daddy died? As I recovered from my mild shock (God forbid that Brady and I would die from an accident and leave Joseph an orphan. Oh, sweet Jesus, please no!) I started naming a few people. And as we talked some more, I realized that he meant WHEN we die (of old age!) not IF we die (as in, prematurely). And I felt comforted that Joseph sees himself growing up and growing older. I don't know what the future holds for my son, and us for that matter, but I just have to keep this in mind: "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
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its been a ruff week for our SMA family, thats for sure. Sky tells me his is perfect, and to me he is, I love that Jojo talked to you like that, gives us all just that little bit of hope!!! and a little hop can go a long way! I hope you all have a great weekend!
ReplyDeleteSo saddened to hear of another death to SMA. Prayers that a cure is found. Joseph is an amazing young man.
ReplyDeleteI can so relate to your feelings! It has been such a tough week. So, so heartbreaking when we lose another child to SMA. I think for us as SMA parents, it makes the reality of what we live with day to day that much more real. Although we live with such a heartbreaking reality; it is still a shock when we learn of a new child passing away. Watching your child suffer and miss out on so much is (in my opinion) a grieving process that never really ends. We deal with with grief all the time; as do our children. ((HUGS)) to you and thank you for sharing your thoughts.
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