This is the Part No One Talks About
I went to an event a while back, before COVID-19, to honor and celebrate special needs moms. It was one of the first times I realized how lucky I was that my son just had ‘autism.’
He isn’t medically complex. He isn’t terminal. He can run and eat, and we don’t live a chunk of our lives at Children’s Hospital. We are the lucky ones.
Story after story was told. Mother after mother. All unique. All important.
One of the moms spoke about the moment her daughter passed, and they finally shut off the beeping machines. She said there were days, weeks and months leading up to that moment where she prayed for the beeping to end because it was driving her mad. And then when it ended, she desperately wanted it back. She spoke about the silence and how much louder it is than a continuous beep.
Another mom, who I will never forget, spoke of her son and his multiple suicide attempts. The sentence that haunts me to this day, ‘how do I convince my son to want to live.’ She was exhausted and said she had nothing left to give anyone.
This parenting stuff, right? There are no chapters in the baby and child development books on this stuff.
I’m sharing this because the other night my son injured his body so forcefully that it actually scared me. As I tried to control the bleeding I studied his eyes looking for signs of pain or remorse or anything that could tell me why and how to help him.
Kids are supposed to skin their knees. They are supposed to fall off their bikes and take a tumble or two down the stairs.
As parents we are supposed to protect them from strangers and monsters under the bed. But not from themselves.
I didn’t know about this part when I was pregnant. Just like those other moms didn’t know about sick kids or the desperation of convincing their children to want to live…I didn’t know I’d have to protect my baby from himself.
This is a part no one talks about. The mental health part. The realities of the day to day of keeping a human safe, who doesn’t understand safety.
I just want to say to other parents, I understand. And you are not alone. We may not walk the same road but we can lean on each other. And write our own chapters in our books, knowing that our stories can help each other.
We just keep moving forward. With or without answers. That’s the best we can do sometimes.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
