I have a lot of people tell me that I’m an amazing mom. That I have incredible strength and handle our situation with such grace, and that Grayson is lucky to have me as his mother.
I so appreciate these words of affirmation and encouragement; some days, they are what keep me from collapsing in a puddle of tears on the floor.
And I do know I’m a good mom. I love my children with everything I have, and without question, I would trade places with Grayson and take on his suffering if I could.
But I’m not special, and if you were a fly on my wall, 99% of the time, you would not think I am amazing.
I get frustrated and impatient. I cuss at Grayson’s pump when it beeps for no good reason in the middle of the night. I’m on my phone too much. I look forward to bedtime and pray my kids will sleep just 20 more minutes in the mornings. I’m excited at the prospect of having a child who will actually watch television.
So, I’m just like all you other moms with typical kids, I just happen to have atypical circumstances to deal with.
I had a friend email me last week who said when she reads my blog she is inspired and wonders if I hate people with typical kids complaining about their problems. I can honestly say for the most part, no. Sure, when someone goes on and on about their kid’s ear infection or stomach bug like its the end of the world, I kind of roll my eyes and think, Yeah, try holding your child while he seizes for 30 minutes and then tell me an ear infection is a big deal. But really, parenting is hard, whatever your circumstances are. I haven’t yet dealt with two year old tantrums, kids eating dog food or writing with Sharpie on the wall, or junior high girl drama (but it’s coming…eek). Truthfully, today the thought those things scares me more than catching vomit in my bare hand or pushing medicine through a feeding tube- because well, I do those things, and it’s just normal for me. Not special, not amazing, just my normal.
Grayson’s disease has made me a better person, but I am not thankful for Mito. I hate it. My little boy suffers every day because of it. Mito will cause our family devastating grief some day. I don’t want to be amazing, or inspiring, or special. I just want a healthy child.
But, I also hope that if I am seen as an amazing mom, that I am just as amazing to my healthy daughter as I am to my sick son. Charlotte deserves the best just as much as Grayson does.
Really, I’m just trying the best I can to deal with the circumstances I’ve been given, as would most people in this situation.