Who likes a stomach bug? That’s ridiculous. Sure, a stomach bug can help a late-30-something lose those couple of LBs she’s been trying to shed. And maybe a day on the couch isn’t so bad for a bit. But a stomach bug that hits both kids at once? Surely no lunatic would find that positive. But I do.
Now, a disclaimer before I explain. The stomach bug that has hit my family seems to be a 24 hr. thing. And having compromised immune systems in our house, I do not take this lightly. I know one trip to the bathroom can be the difference between a trip to the hospital for fluids to fight dehydration. I also know that by “putting this out there,” I’ll probably be the family member to get the bug the worst. And it’ll hit on Saturday morning when I have a date night scheduled. The parenting Gods don’t take stuff like this lightly when you send it out into the universe. Seriously. I get it. But hear me out…
When Kelsey has a major blowout at her therapy office and I tell the therapists we have to go home…they get it. When I get a call from the nurse at school and she says Ben has thrown up in the classroom and to come get him, she understands what’s happening to him. When he comes home and cries because of stomach pains…I get it. When I tell our friends that my kids were both bit by the bug…they get it. Everyone understands what the stomach bug means when a 7 year old and 22 month old get it at the same time. This is not something confusing or hard to explain. Suck fest. There are no questions (okay there are some…how long will it last? Will they be able to sleep?) that can’t be answered.
As an established mother, I knew to get the buckets. To put layers of towels on the bed. That a lot of laundry was in my future.
I knew how to prepare, what to expect, and how to handle it. And that it would likely end in 24-48 hours. Again, I know it could be much, much worse and last much longer with dire consequences. I’m not naive. I saw the norovirus of 2010 and it was not pretty. Especially to a 22 lb. three year old who was affected for 11 days.
You can probably begin to guess why I don’t hate stomach bugs. It’s because unlike Menkes, hypotonia, apraxia, diverticulum, hydrocephalus, strabismus, amblyopia, and esotropia that affect my kids (and are underlined as spelling errors because not even Microsoft Word understands what they are), “stomach bug” is familiar and understood (and spelled correctly!). When you mention those two words, people can relate. It effects them too. They know what it’s like. They’ve been there and will be there again. They know how gross it is, how bad it sucks and how terrible it makes your kids feel. You don’t have to explain much. Say “it’s coming out both ends” and people immediately nod and tell you to say nothing more.
This is what makes raising two kids with special needs so hard. It’s the unknowns. It’s the feeling that you’re alone and dealing with something that no one you know has had to deal with. We do know many families personally with Menkes, and while we find comfort in their stories and being able to relate, each story is so, so different. We may connect in some ways, but in others our stories are so different. I guess that’s true of all children, but we are definitely the extreme. Most medical professionals have never heard of Menkes. Or if they “say” they have, I’m rarely convinced they could explain it.
As for Kelsey’s much more prevalent diagnoses, we still feel alone. I’m struggling to find anyone that has a similar story as hers with the vision and behavior component. We are getting there, but we still have so many unanswered questions. So many unknowns on how to “fix” her.
One positive to having two children with special conditions is that I am the person who has been there before. I can remember how ankle braces affected Ben the first time he got them. I remember that finding shoes to fit was such a struggle. I remember that he didn’t walk until 2.5 and he didn’t talk until after that. That we had to sing “Happy Birthday” at a whisper level for two years because he didn’t like crowds or loud noises. That even though last year he couldn’t write or identify all of his letters, he’s now writing sentences and stories a year later. Experience brings perspective. And that perspective is definitely helpful the second time around the special needs world.
But even though I was there, it’s hard to convince myself all this will happen for Kelsey too. Luckily I know someone else, pretty well I might add, who remembers all this too and reminds me when I need to hear it. But it’s a lonely world. Even with Facebook to connect us to families who are struggling and succeeding too. Even with the largest, most supportive network of friends and family we could possibly have. Even with friends who are googling support networks and new therapies and sending them on a weekly basis. Even with family members who are sending me shoes to try to fit Kelsey’s braces. Even with all that, many days are pretty lonely and hearing someone say, “Oh! Exactly the same thing happened with my daughter last week!,” just like the stomach bug, would be so nice to hear. So reassuring.
But, today I’m not feeling mopey about sickness. Even with two stomach bugs and one on the way (Dave. Not me, yet.). Today I’ve got more perspective on this parenting thing. Guess I better go get to those patients…