Honestly, there are times when months go by and we are the Normalton's. Jason and Erica Normalton from Normalville, USA! We don't sit around and talk about Spina Bifida over breakfast, or mention it to people in the streets or at the store. We don't get asked questions via Twitter and the newspaper isn't writing up any giant front page articles. Sometimes, it's almost like Roman doesn't have Spina Bifida and Isabelle isn't saying, "Look at his giant scar!" Sometimes, it's like we're normal parents. Sometimes it just doesn't come up.
Whether we're just driving through Normalville or if we're back in our own little world-it doesn't matter to us. Our idea of "normal" is that, well, we're not normal. The phases we go through, are a part of our daily routine. If we talk about Spina Bifida 50 times a day, or if it comes up once a month, we're used to it.
It's this level of normalcy that sometimes makes it difficult to handle off-the-wall comments from strangers. At the end of the day we usually just shake our head in disbelief, or laugh it off. It can't be easy for strangers, after all, this isn't their normal. It's ours. But, just because we've settled into this routine doesn't mean that every single asinine thing people say to us will fly over us. Eventually one of us will snap.
To help ensure that you don't lose a finger or get kicked in the shin, here are a few things that me, my special needs child and my "typically abled" children are entitled to. Yeah, I said it.
--I have cried and screamed and swore. I've questioned faith, punched walls and wished with my entire body that it was a dream. I've begged God, I've blamed myself, I've been to a level of hell that only a few moms can say they have visited and we have the worst souvenir to prove it. So don't ask me how "I'm holding up." I'm entitled to feel like shit every once in a while. I've earned it.
-- My son has had 10 surgeries in 2 years. He's not done. I know we won't be able to stop at 10. But despite the recovery, the pain, the casting, and the tears he's managed to learn the entire alphabet, he's mustered up the strength to learn all of his shapes, count to 20, and find the courage to be hilarious, charming and sing several classic children's songs in perfect measure. Roman talks better than most his age. Much of his advancement coming from his sister, whose favorite game was, "Speech therapist" instead of "house." He walks with his walker, when doctors said he probably wouldn't. He jumps, runs, dances and kicks in his walker. So don't dismiss his courage and strength by saying, "poor guy" Don't put him under some imaginary umbrella that everybody who is "differently abled" must be really, really sad about it. He's the happiest kid I know, and probably stronger than most of you. Don't pity him.
-- My oldest and my youngest have an advantage that most kids can learn, but never really know. They won't just BE tolerant and speak up for disability. They'll feel it. They'll know it. It will be a part of them just like it's a part of me, like it's a part of Roman. They won't just refrain from using the R-word, they'll stand up against it. They'll say "this is wrong. This hurts." They'll be helpful and kind and genuine. There seems to be some idea that my non-disabled children sacrifice so much in the name of Roman's health. No. If we have a hospital visit, or a long hospital stay they aren't going to kennel. They go where there are toys, blocks, paint and candy before dinner. (and probably again after) And discipline? Surely I don't punish the little boy in the walker. Well, puppy dog eyes or not, he's two which means he does two minutes with his nose to the wall,, just like Isabelle did and just like Sullivan will do. And honestly, if he doesn't stop scheming ways to break into the treasure chest I might just up it to 3 minutes. I have three kids and a husband, that means under this roof my heart splits 4 ways, equally. All the time.
In general, it's best to follow these simple rules:
-Don't park in a handicap spot unless you have a placard.
-Don't ask us what's "wrong" with our kids.
-Don't ask us medical questions.
I am the same as you, my children are the same as yours. Just take a deep breath and treat us that way.