When your Search for Answers Brings Sadness
Hey friends.
First, a huge thank you to everyone that emailed, commented and messaged me after my sad post a few nights ago. I read every word.
Second, here is the video I know many of you have been waiting for.
A few days ago we took our son Cooper for an appointment at the Mayo Clinic. This was the first of eight appointments over the next couple of months. It’s a big deal in our world. I finally found a doctor that will look at Cooper’s whole case….not just bits and pieces. We have appointments set to see Behavioral, Speech, GI, Genetics, ENT, Immunology and Allergy.
I am doing this for a few reasons. I am searching for answers. I am searching for help. And I am searching for hope.
I didn’t come away with really any of those things. I came away with sadness.
I waited to film this video until this yesterday because I wanted to process all of my thoughts and emotions. If I would’ve filmed it last night I would have been a blubbering mess, stomping my feet, and going on about all the things autism has stolen from us.
That’s how I felt.
I needed to sit in the dark for a while and have a late night conversation with God and ask him why. It was one of those nights. And it snuck up on me.
That’s the thing with grief. You always think you are past it.
Raising autistic babies is many things. Joyous, beautiful, frustrating, exhausting. Lately, Cooper has been having some huge wins. He is potty trained! He is sleeping. He is communicating. I think I started to get cocky. I let myself see a different life for my son. As I like to say, hope bubbled up.
Yesterday shattered that. I saw the autism in my son. I had forgotten how severe it can be and I think it shocked me. It caught me off guard.
My whole life is autism. I feel like I’ve killed myself to help him, give him his best life, get the best therapies, and he is still severe. This is forever. And it’s not going away.
Once again, I need to wrap my brain around that.
I’m on this constant cycle of hope, acceptance, grief, forever, and repeat. And I’m exhausted.
Take a listen. But be kind please.
https://youtu.be/PCm_9z3jeis
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 and subscribe to our newsletter.
Some of us are wondering how we might be able to help. Another follower asked me if I could open a Go-Fund me for the stroller you guys need. Medical costs are expensive and you do have a village. If you get the time to find the comment I am talking about in the FB video you posted yesterday please let us know what is the best way to help. You could also add a donation button that coupd go towards Cooper’s medical expenses… I know one feels awful, but you’d be surprised. You raise us up more times that you could know (mamma of 2 autistic boys)
I also have never heard my sons voice,.
I so understand, I see you in the dark, I sit in the dark more times than I’d like to admit.
I’ve left a seat open next to me if you ever need to take a rest, we can maybe turn on a nightlight until were ready for the overhead light.
<3
Hi Kate,
I want to thank you for being real and honest. My daughter is globally delayed (real age is 9.5, developmentally is 4.5) and although her needs are very different than Cooper’s, I can understand some of your pain. I don’t have friends who understand having a 9 year old who can’t read or write her name and prefers watching Paw Patrol or Backyardigans. It is a lonely world and I am so thankful you’ve let us into yours. I hope your time in the dark isn’t too long and that when you come back to the light, you are ready to face the world.
Hi! I’m a teaching assistant in a public school working with children with special needs. I also grew up with a brother who is mentally retarded. I’m probably not supposed to use that word, but it is what it is. I especially appreciated how you talked about how you wanted your son to cooperate- just for a little while- to shut off the disability- the wish to be able to take a break from it just for a moment… I understand that frustration and was surprised to hear someone verbalize it so perfectly!
The wish isn’t going to happen, but strengthened me- just hearing someone else say it.