This morning while tickling Evan an listening to the most amazing sound, his laughter, I couldn't help but think about how amazing life is! I have a wonderful husband who loves his family and does everything he can to care for us. I have wonderful family members who, no matter how far away, support us any way they can. I have great friends who can make me laugh even on my worst days. And of course I have an adorable healthy little boy who gets to enjoy life!
I can imagine what life would be like if we had not chosen transplant for Evan at such a young age. While I know we could have done it and managed his MSUD as best we could, I can't say it would have been easy. By now I can imagine Evan would have had a g tube placed because he hated his formula so much. Our days would be dictated by a schedule around feeding a of formula and strict food measurements. I know that between each blood draw I would live in immeasurable fear that the Evan we know could be taken from us at any moment by illness or stress. That stress is different now as I don't live each day in that fear.
It's not to say that having a child who has had a transplant is easy, but for us it's easier. He only takes medications twice a day. The rest of the day is ours as we please. Like any normal toddler, he picks and chooses what he will and won't eat ad how much of it he will eat. I still stress about food, but not because I'm afraid it will make him sick if he does or doesn't eat something. I stress because I am a mom and I want to make sure my little boy is eating enough and getting the necessary things. It's what I call "normal" fear and stress of parenthood.
I do still stress about lab draws and worry about his health, but it's so different and it doesn't consume my every thought. I don't know what it's like to have a "healthy" child, but I can tell you this feels much more "normal" than things were before! I LOVE being a mommy! I LOVE watching my son learn, play, and explore!
Each day I am thankful for this gift of "normalcy" and LIFE that was given to us by Evan's donor! I hope the family some day will understand that their amazing gift in a time of such grief has given us so much life!
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