I want to give a shout out to the parents living every single day with a broken heart.
Parents who are caregivers for life.
Parents who wash their child’s feet and picture what this will be like when they are 25. Or 40. Or toenails. Or haircuts. Or when their child needs to start shaving. Or when puberty hits.
To the parents that worry about life after High School. And their own retirement. And after they die.
I’m scared too. I’m scared of the future. Hell, I’m scared of tomorrow.
I see all the parents who fight with doctors. And schools. And fight for some form of simplicity and joy.
Parent’s that fight for any scrap of normalcy. Just a normal, simple day.
A day without doctors or therapy. I day with out talking about their kids disability.
Parents who drink coffee all day. Parents who physically collapse at the end of the day. Parents who make daily lists with things like: Get prescription, call the county, call social worker, email the school, order diapers, attend family therapy, find a new GI doctor, charge the IPad, charge the Kindle, etc., etc., etc.
Parents that can’t describe the shrieks that come of out of their own child’s mouth. Parents that can’t describe the haunting sounds that they hear all day. Or how many times they say, ‘turn the iPad down. Or parents that actually cry when the internet is down. Or when the battery on the iPad dies.
Parents who wake up every morning and have no idea how they are going to get through all of the appointments and work and life.
But they do it.
I see you. I see that you are hurting. And I understand. Trust me when I say I know the agony that is literally eating your heart and stomach. You love your child more than you can even put into words.
I get it.
I see the parents that celebrate the tiniest of victories. Maybe your kiddo used a spoon. Or didn’t scream at the tag on their shirt. Or tried a new food. Hell, maybe they just touched a new food. Or allowed it to be on the table. Or maybe they slept through the night at 6 years old for the first time.
These victories make no sense to people that don’t live our journey. So you don’t say anything. You keep it inside. But then you feel like you are robbing your child of a victory.
You can’t win. I see you. I am you.
I see that you are operating off of no sleep. And you know what real exhaustion feels like. Because it’s not just being physically tired. It’s so much deeper than that. It’s carrying the weight of a special needs child. It’s in your soul. It’s indescribable.
I see you smiling when people stare at your child. I see you.
Your child melts down at the grocery store. Or in the waiting room at the doctors office. Or my favorite…they physically lie down in the middle of a road or a parking lot.
People stare. Hopefully you are wearing sunglasses so you can tear up behind them.
I’ve heard you begging your child to just do something. Just walk please. Just eat this please. Just hug me please.
It’s opening up their backpack and seeing work that the teacher has clearly done. Knowing that your child would never color like that. Or cut pieces of paper.
It’s seeing your child’s school picture and seeing that their disability is no longer hidden.
Your child has special needs. It’s right there in an 8×10. It’s wanting to rip up the picture and run and scream and hide.
It’s getting angry at the teacher for the bad picture knowing in your heart that getting pictures of your kid is impossible.
It is crying the whole entire way to work and wiping off your eyeliner before you walk into your office.
It’s putting your headphones on because you can’t talk about autism for one more second.
It is getting emails from the school about Fun Runs and Movie Night and Play Dates and knowing your child won’t participate in any of them.
It’s wanting to volunteer at the school but knowing when you see all the normal children you will feel like throwing up.
I see you. It takes an unbelievable strength to have a special ed child that is part of public education.
I am so sorry. It is terrible. You you hate yourself for being jealous of everyone else.
It’s joining groups like the special education advisory council because you don’t fit in at the PTA. It’s feeling like Special Ed is tattooed on your forehead. It’s feeling disabled yourself.
It’s hating the other parents and the children.
It’s real. And it is so raw.
But you go. You go to the events. You attend the meetings. But you do it all with a lens of special ed. There is a constant reel running through your head saying, “my child can’t do that. We can’t do that.”
That takes real strength.
It’s the pit in you stomach when the teacher emails pictures from school and your child is never in any of them. And you get it. You really do. Your child is too disruptive. They are too difficult. They are lost somewhere in a dark room.
It’s not being able to say how your child is doing in school.
It’s wondering every day if you should quit your job and home school your child.
You are raising an invisible child.
And you wonder if you should give up.
You get it. I get it. We together get it. It’s the world that doesn’t.
It hurts. Oh my god it hurts so unbelievably bad.
And you look normal every day. You get up. You fight a whole battle before work. But you make it there. And you smile. You laugh.
I see you friend.
It’s hearing other children talk to their parents and laugh and smile and enjoy typical activities.
This is for the moms and dads that put on a smile every single day and pretend that it doesn’t matter.
It’s hating their small little voices because you have never heard your child’s.
This is for the parents that give up every single day and wake up the next morning to try again.
That is strength my readers. Walking through every day with a broken heart and breaking down in your car.
I just want you to know that you didn’t do anything wrong. I think that every day. Not a day goes by where I don’t blame myself for Cooper’s disability. I must have done something wrong.
And the never ending feeling of not doing enough. I feel it too.
And knowing you will carry this weight until you die.
I get it.
I just want to say….I see you. And what you are doing is incredibly amazing. And you are doing it all with a broken heart. A broken spirit. And the weight of the world on your shoulders. That my friends is strength.
And I am so unbelievably proud of you.