I just changed my six year old’s diaper. It was messy. There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand and the carpet.
And I almost started to cry.
I thought, ‘why me?’
And I let myself go down the rabbit hole of feelings that accompany raising a baby with special needs.
I let myself sink right into that shit.
The self pity. The ‘why me’s’. The ‘this isn’t fairs.’ The ‘I can’t do this for the rest of my life.’
I wondered what I did to deserve this.
And for one brief tiny second I let myself picture what this will be like when he is 12. I pictured Cooper as a teenager. Then a man. Only for a second though.
I let the feelings last as long as it took to wrap the diaper in a Target bag and throw it on the front porch.
As I shut the door I caught a glimpse of the neighbor kids building a fort. Two boys. Both Cooper’s age. They waved and shouted hello.
And I breathed a sigh of exhaustion as Cooper non-verbally screamed at me to put another diaper on him.
And then, just like that, the feelings were gone. All of the sadness and depression and jealousy just left.
How you ask?
I gave up hoping for life to be different a long time ago. I gave up hoping that his autism would go away.
I just, gave up.
God that sounds terrible. But, well, it’s the honest truth.
I had to give up. I couldn’t take the pressure of hoping.
The pressure of hoping he would talk. Of hoping he would be potty trained. Of hoping he would turn out normal. Of hoping that he would grow up and get married and have babies.
I had turned into this person that was always waiting for my kid to get better. I was waiting for words. For a conversation. For it to get easier. I was waiting for something that wasn’t going to happen.
And I was slowly going insane.
Hope. It’s a funny thing.
Never give up they say. Keep trying. Stay positive.
But, what if the hope is killing you.
I found out that Cooper’s autism was severe when he started Kindergarten.
Age 5 was a tough year for my ‘hope.’ My baby was so different. He was in special education. School wasn’t fun for us. It was IEP’s and stressful conversations. It was different than of a typical child.
I would spend days hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what it ‘should have been like.’
And then I stopped hoping. Just like that.
I realized to keep my sanity I had to give up hoping for things like play dates and friends and field trips. I had to let go of the hopes for school dances and sleepovers. And sports.
Giving up hope damn near killed me people. I won’t lie to you. I felt like a terrible mother.
But I couldn’t take the alternative any longer.
Do you know what it does to a mom when she is continuously asked by friends and family if her son is going to talk? Or use the toilet? Or learn to read? Or move away after High School?
Daily people were asking me what the future looked like. And they’d always say something like, ‘well, HOPEFULLY, he improves.’ ‘Hopefully he starts talking.’ ‘Hopefully he starts pooping in the toilet.’
I would stare at these people. And my I would be dying on the inside. I would always smile and say, ‘hopefully someday!’
And then one day I just stopped. I started saying ‘probably not.’ And now, I say, ‘no.’ Cooper will probably never talk. And he may never use the toilet.
And the relief I felt from those sentences. It was so freeing.
I realized I was keeping this false hope up to make everyone else feel better. I wanted to give them an answer that made them happy and comfortable. And it was at the price of my heart.
So, I stopped.
I gave up the hopes of my perfect, normal child.
And as soon as I did that I was able to accept life for what it was.
Giving up hope saved me.
Cooper and I have beautiful moments. We laugh. We hug. I tickle Cooper. He blows raspberries on my back. We go swimming. I lay with him before he falls asleep.I laugh at his trains. I sing him song after song. I jump with him on our trampoline.
And slowly, those things started to make me feel OK. Not quite so sad.
But I had to give up on the hope that we would have someday have a conversation. I had too. I just had too friends.
The hopeful waiting is gone now. I don’t spend nights thinking ‘what if’ anymore.
And that’s OK.
Now, if it happens, I can experience the joy in a brand new way.
Until then, I am loving the kid that I have. No more hoping for a different one.