Not a typical blog post from me - but this is what's on my mind and I needed to get it out.
Special needs parenting is so hard. It’s almost like you’re stuck on an island where everyone can see you but no one can hear your screams or find a way to come and bring you back to civilization. Even when your spouse is an active participant, your two experiences and journeys are so different. So many low points where you feel that the beat down you just experienced is your low point, just to find out that no, in fact, it can and will get worse.
No one tells you how truly unbearable it can be at times.
Yet, every day we have to keep going. We have to wake up and try again, just to keep failing day after day. Talk about feeling insane, trying and doing the same stuff, different stuff, ANYTHING and expecting a new result. When will that ever actually happen?
Probably the hardest part of it all, that special needs child, doesn’t even realize what’s truly happening behind the scenes. Doesn’t mean to cause the trouble and drama, doesn’t understand why they are wrong.
This is what makes me feel guilty, how can I be angry when I can’t even know if he is comprehending.
I sit on this island daily, and it isn’t a pretty tropical one with warm sand between my toes and dolphins swimming in the sea. It’s an island of hell, one with thunder and lightning casting down rainstorms constantly. Lava shooting up under my feet if I take one wrong step. It’s an island where I can see the world going by, without me. I can see friends and family moving onto other things and adventures. Jobs off in the distance I can’t ever reach. Goals, loves, experiences just out of grasp because there is something wrapped around my ankle’s keeping me shackled.
Does anyone else feel this way? Who knows? I hate the online support groups, they make me feel so guilty for my feelings.
And you can’t talk to the people around you, because they will judge you. They will see how strict you have to be to keep order and control in your house and judge you. Judge your child, judge your family. Cast weary glances at you and your kid because you’re having a meltdown in a restaurant over carrots. Everyone is an enemy because they could hurt your child emotionally with judgment.
That’s the kicker. At the end of the day, no matter the hell you’re living, you still love that child more than anything in the whole world. You walk through that hell daily, for them, gladly to keep them safe. Never with regret, just with a lot of burden. Burden of the world constantly pushing against you. You’re the only defense that child has and that pressure builds up. Which brings back more guilt for feeling all of this anxious emotions.
I just want, no need, one day out of hell. One day to recharge, to live, to just, not have to carry the burden. I have a friend who says she will rest when she dies, I’m not her. I refuse to accept that. There has to be an easier way.
I just wish I knew what it was. I just wish, one day, that child knows how much was sacrificed so he could have a good life.
It isn’t all bad, but when it is, its hell. Maybe, soon, more good days will be on the rise.
Maybe I’ll get that one day…