Really Sad Things

b2cc186e633c5e6eaab22e77994aa6f1This past week Jamie and Sawyer were wrestling on the couch. They were tickling and laughing and I was reading and sorta paying attention. I heard Jamie say something to Sawyer that absolutely took my breath away. Sawyer was babbling about balls and apples and playing ball and going outside. The usual with that kid. And then I hear Jamie say, as he was hugging him, “I can’t wait to take you to baseball games and play ball just like I did with my dad.” It was one of the most honest statements I have ever heard come out of his mouth. And it hurt my heart so bad.

I have never heard Jamie say anything like that before. Joking, yes. But never serious.

I have these same thoughts all the time. And I worry about saying them out loud because someone will judge me. I shouldn’t care but I do. I care that people will think I am a bad mom. Or that we have given up. And we haven’t. It’s just so devastating to have hope. And the sadness is so strong.

And I’m not just sad for me. My heart is broke for Jamie. I am so sad this his first son isn’t what we pictured. And I’m sad for Sawyer. Sad that his brother won’t play with him.  Sad that as we look for neighborhoods we want to make sure we pick one with lots of kids for Sawyer to play with. Imagine how bad that hurts. We are constantly at war with ourselves. Are we giving up if we say those things?

I’m sad for Cooper’s grandparents. I am so sad that he won’t play with them.  And I am sad for my friends. Sad that I lost some of them or that I am jealous of their kids. I just can’t hear about their kids…even though I love them more than words I just can’t.

Sad that we constantly miss events because I can’t see the other kids. I just can’t.

It is so much more than just Autism. And that part isn’t in any book. Autism is the biggest challenge I have ever encountered and it’s minimal compared to my heart being broken.

I left Jamie and Sawyer and wandered back to Cooper’s room. He was sitting on his floor watching a movie holding a giant piece of Styrofoam. All the pillows were off the bed. The chairs were knocked over and  he was wearing one shoe. God he was cute just sitting there. I bent down really close to him and gave him the biggest hug I could. And kissed every single inch of his face.

He pointed to his Thomas movie and squealed in delight. And I lost it. Tears started streaming down my face. And he just giggled at something on the show.

Cooper has this innocence that I can’t even put into words. He is so unbelievably sweet. I wonder if he will ever lose that or if it’s here to stay.

My heart is broken and I don’t think it will ever be fixed.

We moved this weekend so Cooper can start his new school today. And don’t get me wrong, I am happy and excited but in a way I am just numb. He can’t tell me about school. He can’t tell me about his friends or his teachers. There will be nothing to look forward to when picking him up.

Jamie and I will drop him off at 1:30 and leave our nonverbal baby with new people in a new place and give them our last shred of hope.  I am so scared.

And the one thing that no one will say out loud is…’what if it doesn’t work? What if this is it?”

I want to be excited about this new city and a new house. I really do. But I don’t think I’m fixable. I just want Cooper to get better. More than I can put into words.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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10 Comments

  1. rgemom on October 6, 2014 at 6:56 pm

    Wishing you hope, and sending you hugs. Some days, Autism beats all of us. But there will be days you and Cooper will win. I believe that with everything in me.



  2. Meg C. DeBoe on October 7, 2014 at 12:05 am

    Crying for you, sweetheart. Fingers crossed for new beginnings.



  3. Bethany on October 7, 2014 at 12:29 am

    I found your blog from Aprille at Beautiful in his time, and just want to give you a big virtual hug. My son was officially diagnosed with autism 2 weeks ago (crying as I type this, it’s settling in I guess) and he has a speech disorder similar to apraxia.

    I’ve been there. I AM there, right now, and it’s hard.

    My son just turned 6 and is finally talking. It wasn’t until the last year or so that he started improving, though. There’s always hope. <3



  4. Cyn on October 7, 2014 at 1:59 am

    I wanted to just take a moment and say it’s okay to feel sad and I’m glad you have a place to release these emotions/feelings. For myself I went through months of grieving after the diagnosis because I never in a millions years thought my little guy would be on this kind of a journey. I just was sad that he had to be given such a hard lot in life with everything going to be a challenge…for us too. You will get to a different place when you are ready and that’s okay. This will be the hardest thing you will ever do. I hated going to the playground being around other children or visiting family because I saw my guy having seriously tough times. If there is one thing I can say is that even though at times life goes upside down another world is opening up to you. I have met some incredible people because my son is Autistic. Teachers, early child educators, other Mom’s who have taught me so much and that knowledge has helped me raise my younger child. Feel free to contact me anytime via email during one of the tough days. Take care:)



    • Avatar photo findingcoopersvoice on October 8, 2014 at 8:38 pm

      Thanks! Your comments are always so wonderful!



      • Cyn on October 9, 2014 at 2:58 am

        You are welcome 🙂 I wanted to share with you that my son who is 7 has a buddy that is new to the school and who is Autistic as well. They both go to Grade 2 together and to the special needs classroom. They have really bonded but while my son is now verbal the other boy is not but he is trying to make sounds. He has an iPad but doesn’t want to use it to communicate even though he’s been taught how to use it. Why? Because he wants to talk. Why am I telling you this? Well both boys are working at Grade 2 level in a regular classroom. Both boys are friends and get a long. They have found a way to communicate and have fun. The other boy in the special ed room can’t go to Grade 2 classroom even though he can read at a 9 yr old level and beat every teacher at chess. Why? Its too stimulating and he can’t sit still and likes to dump bins all over the place but put him in front of a computer and he does his school work but he might strip to his undies and pretend to swim on the blue carpet for fun. I guess what I’m saying is there is another side to all of this chaos and craziness. Just do what you have to do now and take care of yourself.



  5. sproutpeds on October 7, 2014 at 10:29 pm

    You should check out I Can 4 Isaac! I work with her son Isaac as an SLP and he’s 15. She honestly blogs about their family, life and struggles. I feel her blogs may help you in some small way see hope and also see what life looks like in a few years. You are in my thoughts and prayers as we labor to “cultivate hope in familes…” as therapists! Hugs!



    • Avatar photo findingcoopersvoice on October 8, 2014 at 8:37 pm

      Thanks! I will definitely check it out!



  6. Jill on October 7, 2014 at 10:51 pm

    Cried reading this. Hugs mama.



    • Avatar photo findingcoopersvoice on October 8, 2014 at 8:37 pm

      Right back at ya lady.