I've been a special needs mom for 14 years now. Pretty sure I've not slept a solid night in all that time. My son has Down syndrome, ADHD, and sensory issues. There's no sleeping, even with melatonin. He's often up multiple times a night. And now that he is more independent (yay, but bah!), he will sometimes wake up at 3am, come down stairs, turn on the TV and start fixing his own chicken nuggets in the microwave. I have to sleep with one ear open at all times, listening for the turn of his door handle, so I can jump up fast enough to redirect him back to bed and keep his brain from switching "on". Mine too. Although I'm thrilled he is capable of motor planning all of those activities, dude needs to sleep so MOM can sleep. Otherwise, I'm a "Mom-bie", and that is not pleasant for anyone in the family....for 14 straight years.
All that aside, throughout these 14 years, I am constantly reminded of the two sides of being a special needs parent. When my son was born, I remember distinctly saying "I don't want to be a flag waver". You know those people I mean...the ones who band together and celebrate their child's differences, and try to convince the rest of the world of the value and potential they have. It's a sad state of affairs that we even HAVE to do that. But it is crucial to the organized, pro-life, dignity of the disabled narrative to put on that sunshine face at all times. I get it, I understand it, I accept it, and I fight for it, every day...because the pro-life, dignity of the disabled narrative IS of crucial importance in a world hell-bent on marginalizing human life. The Down syndrome prenatal abortion rate is up near 90% in this country. That's just not OK, not in any way, shape, form, or for any reason.
At the same time, while we're all smiling for the camera, what I find in family "support groups" is a lack of any safe space for moms to just openly admit they are struggling. It's way too much about the delirious, emphatic love of our children (which of course is REAL, but only one part of our lives). Where can new moms grieve what feels like an awful loss? We're not allowed to say "this is really hard, I haven't slept in weeks, I wish he didn't have XYZ, I didn't want this for my child".... where is there a safe place to even be able to say that out loud? Hospitals send you home with "here's an information packet from your local support group, have a nice life". Why do parents pretend they aren't hurting, sad, frustrated, discouraged, or feeling a daily sense of grief? Why is there shame and guilt in being honest with yourself and others? Why are you labeled "selfish" for needing respite, a real break, time away to rest? I call BS on that.
The world should say "God bless you for serving and raising this precious gift...we know it's hard, we know it's worth it, what can we do to support you?" That's where we should be. Not "you had the chance to terminate it" or "you chose to adopt a child like that, you brought this on yourself". People that think that need to shut up and keep on walking. Unfriended and blocked on FB. I've got no time for idiots like that.
For the last 10 years I've served as a non-profit director in the special needs community. I founded that organization out of intense love for my son, but also to surround myself with people who actually CHOOSE this challenging life. Some of those people adopt multiple times. It somehow soothes my heart to know that so many people think so highly of *my* child that they would intentionally bring a child like him into their own families. Many in the general public see special needs moms as heroic in some bizarre way. We are not heroes. We are ordinary moms raising extraordinary children. It makes me uncomfortable to be put on a pedestal. I am only doing that which I know needs to be done. I'm not a hero. Heroes don't hurt. Heroes aren't broken down. Heroes aren't tired. Heroes don't cry. And if they do, they get over it really fast.
So now, after 10 years, I'm feeling compelled to serve more moms like myself....moms who just need a break. We need to sleep, alone, away, in quiet peace, for more than 15 minutes. It's taken me too long to realize that taking care of ME is the best way I can serve my children. I've allowed myself to be drained beyond the point of functioning. And I'm here now to help other moms get to that realization sooner than I did. It's ok to admit that I'm sad and tired and stressed....and that it's ok to get away by myself for a few days. I know thousands of other moms are in the same place, and I hope you're all shedding silent tears reading this, knowing you aren't alone. Being tired and stressed does not mean your child is not worth the extra effort. It just means YOU ARE TOO.
