To the Special Needs Parent Who Feels Like You Can’t Face Another Day
I feel alone.
My husband was right: There are bad storms out tonight. I can hear the wind and rain slamming against the house as I lay next to my oldest son — my 10-year-old for whom I had to write a note to his teacher so he could be excused from late homework assignments. My 10-year-old who was up past 11 p.m. and still couldn’t finish it all because he had to help me take care of his two brothers and father. My 10-year-old who is more of a man at his young age than most are at 40.
For those of you who can relate, you are not alone.
The skin around my eyes is sticky from tears and panic attack sweats, from guilt and exhaustion and frustration. Remember, you aren’t alone.
When your insurance changes again and the one doctor you so desperately need doesn’t accept your new insurance — you aren’t alone.
You dealt with your child’s school again today because your child with autism (or any diagnosis) told the teacher to shut up again or made a fist to hit his teaching assistant. You cried again because you can’t make him learn multiplication. You know he’ll learn it on his own or he won’t — but you can’t get people to understand it’s his frustration and inability to communicate that leads to these behaviors. You aren’t alone.
When you try to explain again to your autistic child that he or she is not stupid or the “bad angel,” when they repeat over and over they want to be dead or disappear, or worse yet, “I don’t have autism anymore” — you aren’t alone.
Your child breaks out in hives for the 72nd time and you still can’t figure out what is causing it, but it’s getting worse and worse and close to anaphylaxis. You are desperate to figure it out before it gets to that point or before he or she dies. You panic. You get sick over the worry. Insomnia takes over. You aren’t alone.
When you cancel your own necessary doctor appointments to take care of everyone else and suffer in pain, severe sickness and fatigue with an immune system that no longer exists, in part because of your overwhelming life — remember you aren’t alone.
After that headache continues for three or 10 days because you feel like you are drowning under all the crap your family has to deal with every day — every single day — you aren’t alone.
You are afraid to leave your partner’s side because his health is bad and it’s panic-inducing, but you have to and wonder the whole time if he or the kids with him are all right. You aren’t alone.
When you get that note from your disabled child’s teacher, again, that says, “We need to talk” about A, B or C and you roll your eyes and kick the cabinet door because you just don’t give a sh*t due to the rest of your life falling down around you — you aren’t alone.
When you burst into tears in the middle of the living room in front of your children because your cup overfloweth and you just can’t take any more — you aren’t alone!
Your medically fragile partner takes longer than normal to come home from a doctor appointment and you worry he is in the hospital again or got in a car accident. You aren’t alone.
When the baby won’t stop crying or climbing on things or escaping your makeshift barricade, and the school is calling again, and your partner is admitted to the hospital for observation, and you want to explode because you’re sick, too — you aren’t alone.
When everyone is finally asleep before midnight and you can’t sleep even though you are desperate, your mind is racing and you just don’t know how to face another day — remember, we are not alone.
I am not alone. I am not alone. I am not alone.
I am mighty.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.