Special

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.

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9 thoughts on “Special

  1. This is such a great post. It's so powerful getting a glimpse into your mind, and what you feel about your family. Yes, you're doing what you believe any mother would do in your circumstance, but the way you do it, with such grace, and such honor to your boy, sets you apart. I continue to be impressed by you, and inspired to be a better mother. Thank you for being in my life, even if it's just over the Internet. 🙂

  2. I am one of those people who is always telling you how amazing you are. But honestly, I don't think you're amazing because of what you do or what you endure. I think I could handle the nitty-gritty, day-to-day realities of having a child with special needs. As you say, it's what you do. And I think I could do those things too, though I'm sure I'd spend much of the time being frustrated and annoyed and all manner of things. What impresses me about you is your attitude about it all. It's the hope and the resilience you show. It's the perspective you have. It's the fact that you respect and honor the struggles of people have it SO MUCH EASIER than you do (I know they do because I am one of those people). That is what you do that so impresses me. That is what you do that I'm sure I couldn't do. That is what you do that seems super human to me. If my child were facing the diagnosis that Grayson is facing I can assure you that my posts would be very different. They would be angry and bitter. They would most likely last that at those with seemingly "perfect" lives. Your posts are never like that. It's just not who you are. And THAT is what so impresses me about how you handle your struggle. It's not that you can survive the insane week long hospitalization, it's that you can write about it later with such poise and grace, leaving room for all the rest of us and our struggles which positively pale in comparisons to what you've been through. That is what makes you such an amazing mother. That is what inspires me after each and every post.

  3. Ditto to Esperanza, really. You do all that you do because you have to – but you haven't let it sour you.Not all moms would do all that you do, and fewer would do it without bitterness creeping in.

  4. Eloquently written, you do have a gift with words. You are an amazing mom and I think you are right, most people would do just as you do…but as I have learned from your some of your stories, maybe not all would…Your grace and positive attitude is what is commendable, I have never witnessed a pity party from you, which you would be justified in having. So while you do what you need to do, you still do it very well. So I say G is special for sure, but so are you dear friend. So are you.

  5. In your FREE time you should totally write a book! I LOVE, LOVE, LOVE it! God has done amazing things through Grayson and your family DESPITE mito and that is worthy to be praised! 🙂 You rock motherhood and life!!! Perhaps Hank could be the fly on the wall and become the dog with a blog! 🙂 Hugs to the Bakers.The Roths

  6. I agree with this 100%, and could not have said it better myself. It's all in how you handle it – and you handle it so well! And for the record, people complaining about ear infections, stomach bugs, etc. irritate me as well. I just want to say, "people, this is part of life and part of parenting. Suck it up."

  7. I get frustrated WAY more times in a day than I'm comfortable with and it makes me sad that I'm not more patient. But with each added challenge, I can imagine that it would increase the frustration level a ton. I love that you talk about your situation so openly and honestly. It is eye-opening and humbling to hear about the everyday life of a family dealing with something so difficult. Yet you never act like you are better than anyone else or even different for that matter. We all have our own challenges and family struggles. Great post.

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