I created this blog to show the journey of Spina Bifida, and I can't do that without being honest. I don't want to give the wrong idea that things are always easy and wonderful. But I don't want to give you the idea that things are always so hard and terrible either. There are real and raw emotions that sometimes get overwhelming. There are days I just close myself in my bathroom and cry... maybe not for any one reason, but for EVERY reason.
I haven't written in so long. It isn't because I don't have anything to write about - believe me I have tons. I just never know where to start anymore. I type and delete so much these days... never wanting to offend anyone, and not wanting people to feel sorry for us.
There are many emotions wrapped up in having a child with Spina Bifida (or any illness/disease/birth defect for that matter). We get called Super Parents all the time, and as much as we dumb down what we do, there really is so much you don't see. You may only see the accomplishments and hear the great stories of how our kids overcome obstacles, but that doesn't mean it's all sunshine and daisies all the time. I can't say we have it hard, because it isn't really that... but it is draining. Physically and emotionally, absolutely draining.
You have to understand, for every accomplishment, there are hundreds of failed attempts. For every milestone reached there are 10 out there that aren't being reached. For every smile, there are a thousand tears. When we are out, people are like, well... he's almost 2 and he's just learning to crawl... what's the big deal? They don't see that we spent the last year watching their babies crawl, walk and run while ours struggled to sit up alone. Sure he's learning to stand and has a walker, but you don't see how much it absolutely terrifies him to stand up. And God help the next person that calls him lazy. He is FAR FROM LAZY. You don't see the HOURS of work we put in every single week. When he's on the lawn and you pass by judging me because I'm letting him scream while he sits in the grass, know that it's because of a sensory problem we are trying to push through. I am not a mean Mommy. And yes, I may still sit down and feed him because he can't quite get the hang of holding the spoon right. I know his diaper is wet... it's always wet. And if I'm jumping for joy at the smell of a poopy diaper, know that it's because his bowel muscles don't work and we haven't had poop for days.
We get people staring all the time. I get that he's a cute kid... and in a wheelchair... but don't look at him like he's broken or dying. He's having more fun in that wheelchair than you could ever imagine. And no - your kids can't "ride it"... it's his legs, sorry. If you have questions, just ask. Be polite and talk, don't stand there and stare. Don't whisper behind our backs. Don't yank your child away like he's got some crazy contagious wheelchair disease. I promise he doesn't bite, and neither do we. But you standing there being rude does make us consider it. Despite the comments, the stares, the pointing fingers and the pity glances, we push through.
We have become masters of scheduling. This doctor has to see him before that doctor can do this, but he needs his braces adjusted so he can see this doctor ... it's really never ending! Throw 4 different therapies in there every week and you've got yourself a full time job! And did you know we were ninjas? Don't believe us? Wait till we are at a birthday party and you'll see. Kids love balloons... and for that reason, people always have balloons at parties. Balloon animals, balloons on the tables, on the ground, everywhere!!!! Did you know balloons are latex? Did you know our kids have or are at high risk for a latex allergy? If you see us karate chopping all the ballons in our path and high tailing it out of there without so much as a goodbye, now you know why!
At the end of the day, I look at Dryden, and I seriously could not see him any other way. Sure, it makes my heart ache that he isn't running around the house, but watching him pop wheelies and speed down every ramp he can find makes me so happy. He truly loves life. He loves making people laugh because he loves to laugh.
He's so smart too. All that talk about how he would have learning difficulties and may be behind in school - he is the polar opposite. He will be 2 in July and he can already count to five. He says his ABC's up to the letter F, and knows MANY more letters. He is starting to talk up a storm too!! He LOVES his Elmo and Cookie Monster. He's just a normal kid, doing normal things. And at the end of the day - the only people that have any concern about his Spina Bifida is us. He doesn't know any better. And all of the running and doctors and therapy ... it all kinda becomes normal after a while.
So what is it like to be the parent of a kid with Spina Bifida, well... you will just have to wait and find out. For us, it's exhausting, but absolutely amazing.
