This past weekend, we got together with a group of families in Colorado who all have a type of Organic Acidemia like Max. There were super little babies, all the way up to teenagers who have started to drive.
It always amazes me when we get together with families with the same or similar metabolic disease that Max has. The spectrum with these diseases is so broad. There are kids running around, talking and playing. There are older kids who look as healthy as our teenager without an OA.
And then there's Max.
It's always so stark to me. In a group of kids, all living with such a serious diagnosis, he tends to be the "worst case". Of all the kids there, he was the lone ranger who wasn't playing, wasn't eating the picnic food, wasn't running around, wasn't nagging at his mom to go to the bathroom, wasn't talking to the others around him.
Early in the journey, we were told over and over, "Don't compare...all the kids are so different. It effects each kid in different ways." So, when we get together with other families, I do try not to compare. But, being a mere human when I don't have my Supermom cape on, I do compare. How can you not?
Then I think of the new parents, with the little babies, who were caught by newborn screening, and whose babies have mild cases. I look at Max through their eyes. And suddenly, my "perfect boy" turns into a giant disabled kid. And I hate that. I hate that my blinders get taken off. I hate the fear that must go through their mind..."that could happen to my baby". One bad episode of acidosis...and boom. I hate that we're perspective to other families.
He got the short end of the disease stick. We know that. His doctor once told us that he's never seen a child so severely affected, and on the flip side of that, he's never seen a child respond so well to treatment as Max. He's an enigma, in that he was so very sick when we brought him in for seizures, and found the metabolic disease, that they truly didn't believe he would come home alive at four months old. They couldn't believe he was alive to that point. But with treatment, he rarely has to go in for actual metabolic disease treatment.
It takes me a while to shake off the feelings of comparison...but I do. I have to. What good is it to compare? We've all got our own trials having children with severe metabolic diseases. And takes just one terrible illness to throw any of them into a tailspin. So, I smile and learn about the other families. I introduce Max with a proud smile. Because while he looks like the worst case...he's really a living reminder that miracles do exist.
And no matter what, he's still my perfect boy. Always my perfect boy.
Deana, I know exactly how you feel! Only you are so good with words!! I think your Mr Max has done so well though, and that is because you are such great parents! I wish I had all the energy that you have too! I have a really hard time with birthdays and Christmas. But, then Michael really could care less about these milestones and is ever so happy with just a hug and a smile! Thank you for sharing your experience.
You're right - Max is so perfect! The comparison thing is hard, even with our type of brain injury/accident too. Or typical kids, or special needs kids - we are often the ones on the severe end as well. And sometimes we're not. But we're all just one bad incident away, you're right. Great post. Loved it.
Karen, it's always what we have a hard time with. Max doesn't miss the things he doesn't know...but we know, and that can make it difficult and sad at times. But, we try not to focus on those times!!
Jenny, true true friend.
Deana, God bless you and may he always give you the strength that you need, you are a great mother and Max is very lucky to have a parents like you and Steve, I feel for all the children with similar conditions like Max and have no parents to even look after them......... may God always keep you and your family in the palm of his hand
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