There have been several articles written on what we, the parents of kids with special needs, wish you, the others, knew about our lives. These two articles cover a lot of ground that I firmly agree with. I want to add my own two cents, and I’m only speaking for myself.
Please don’t say, “I don’t know how you do it” or “I just couldn’t do what you do.” Here’s the truth, you would rise to the occasion just like I did. And here’s the other truth, sometimes I fail miserably. This sentiment isolates me and makes me feel so un-relatable or set apart from you, who I need and want to be friends with. Also, put me on a pedestal like this and I have no where to go but down.
Everything in my life takes more time. Really. Just everything. After you’ve passed the toddler stage of parenting, it’s just a lot of verbal prompts to get your kids out the door. “5 more minutes until we leave. Please put your shoes and coat on.” I’m still doing all of the physical care for my child; dressing, feeding, toileting. Not to mention the extra time to get him into his wheelchair and buckle it down in the van. Not only does it take more time, but we can’t actually go everywhere; that’s the thing about accessibility. A walk in the woods, a day at the beach, even to a museum; it all takes some research and sometimes a herculean effort and often it’s just less stressful to stay home.
My marriage is stronger than you think. There’s debate about the statistics of the rate of divorce among people raising kids with disabilities. Obviously it’s quite taxing on our marriages. Garreth and I share a huge amount of responsibility; we have to communicate about hard things; we have a shared appreciation that only the other understands; we make ourselves vulnerable with our fears. These are all building blocks for a great marriage. The thing is, Garreth and I were thrown into a sink or swim situation. Sometimes we barely stay afloat, but most of the time we’re kicking Olympic synchronized swimmer butt.
I’m mostly over it, and sometimes I’m not. Having Aidan was a crisis when he was born. There were so many unknowns and so much medical attention. Now it’s just life. Yes, I get exhausted and overwhelmed but I also know how to pace myself… that is…until the next thing; the next thing like choosing a wheelchair; or getting a diagnosis of Epilepsy; or working on inclusion with the schools.
I constantly teeter on the edge of gratitude and insanity. It’s very much about perspective, isn’t it? I can definitely get stressed about Aidan’s seizures, appropriately so. I can also bust out my Count voice (1 seizure ah,ha,ha; remember from Sesame Street?) when counting Aidan’s seizures. I can wax eloquent about how his wheelchair has brought him independence and changed our lives, or I can get totally frustrated that he can’t feed himself. It’s all a fine line.
I won’t talk to you in an honest way about the future. Frankly, it scares the hell out of me and you wouldn’t know what to say. It’s not just the exhausted feeling I get at the thought of taking care of Aidan until the day I die, it’s the fear of him dying first.
You may not in the truest way get my life, but I love that you try and that you’re willing to join me in it.