This Isn't The Life I Pictured

b557f1ca6c6d06e036d58f651ce16ac4I called my mom and cried today. I haven’t cried in quite some time over all of this. I was able to get out of the house alone and run some errands and as I was driving I finally broke down crying. I have been holding it in for a few days and it just got to be too much.

The day-to-day with Cooper is so hard. Let me rephrase that. If we let Cooper do whatever he wants life is easy. If we challenge him all hell ‘can’ break loose.  It’s getting too hard. It’s wearing me down to nothing.

And my husband and I see our situation differently. And that part is lonely.

And lastly, I am so utterly sad. I want him to be different. I know that’s awful. Trust me when I say I love Cooper more than anything in this whole world. But I need a positive glimpse of the future. Anything that can keep me moving in the right direction.

Cooper is not a fun child. I actually feel lighter as I type that. It has taken me a year to be able to say it out loud. And then months before I could say it to Jamie. I think it hurt me so badly to even think it for a while. I felt like I was being mean or letting my son down. I promised when I started this blog that I would be always be honest because I know there are other moms out there that are feeling the same things.

It’s not that he’s not social or won’t play. Or that he doesn’t want to interact with you. He just doesn’t find interest in a lot of activities for more than 30 seconds. And that is hard. I want so badly to play with him. And right now he only wants to watch cartoons.

I know I am lucky in some ways too. Cooper loves snuggling and hugging and kiss19ing. He loves sitting on my lap. He loves holding my hand. In the mornings he has to lay in bed between Jamie and I.  (As I type this he is sitting next to me trying to hold my hand.) He laughs constantly. And it’s infectious. He begs to be tickled and thrown in the air. He loves having his back rubbed. Some moms with kiddos like Cooper don’t get these moments. So thank you God for giving them to me.

But, the good times don’t make the hard times easier. I pictured my life so differently. I pictured my son differently. I had a vision of what my life would be like and this wasn’t it.

I am trying to adapt but I’m not quite there yet. And I don’t know if I ever will fully get there. Everyone I talk too promises me it will get easier. And I pray that they are right.

 

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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. jmhart4 on March 8, 2014 at 11:35 pm

    I’m right there with you. I read this and felt like I could have written the exact same thing. I can’t offer you any advice or any concrete help, but I can tell you that you are not alone. I started to think yesterday about what everyone has been telling me, “it will get easier.” And then I got mad because how did they know? How could they possibly know it was going to get better? And then I really thought about it. If things never got any better, would it be okay? Yes. Because that would be what I am used to. That would be what I adapted to, not this idea that this is only temporary. I think we keep being told it will get better because who really wants to say it will always be this way? It’s the response people are supposed to give, and I appreciate it, because it gives me that little bit of hope. But if it never gets any better, and never gets any worse, can I find a way to accept that? I feel for you. I feel for Cooper, and your husband. And I think it’s good to cry, and scream, and just have days where you eat massive amounts of pizza in an effort to feel better. And maybe tomorrow will be better. 🙂 I’m here if you need me.



  2. Amber Perea on March 8, 2014 at 11:49 pm

    I remember very vividly feeling just like that. And, since you read a lot of my stuff, you know that my husband wasn’t exactly on board with having a child that was different and wouldn’t even talk to me about it without snapping.

    But it does get easier. It just does.

    Cooper won’t change, you will. You are in a place right before something magical happens. You now understand where he is, you aren’t harboring denial anymore. You may not have answers…but you know where you stand. That’s key. Slowly, you will let go of what your ideals were. It’s just what happens. That is honestly what makes it easier.

    It’s just a process to get to place where you don’t compare (much) or feel “jilted” (I use the term loosely). But it will come. And, having read you processing for the last month, it’s not that far off. I promise. Your husband will come around, too. Dads just have a harder time then moms.

    You’ll still have bad days and Cooper will still be Cooper but you’ll be in it together. That’s what makes it better.



  3. Claire Hackett on March 9, 2014 at 1:55 am

    Hugs Kate! You are a great Mom! Thanks for sharing your honesty with us and know you are not alone!



  4. Kelly on March 9, 2014 at 5:10 am

    My six-month-old daughter is a highly demanding child, unlike the babies of my peers, and I can identify with your feelings and your occasional breakdowns. Admitting feelings that we’re “not supposed to feel” as mothers is more valuable and freeing that we all acknowledge. It’s important to share these isolating yet common thoughts. Thanks for your honesty.



  5. A Miracle In the Works on March 9, 2014 at 7:18 am

    I hear you. It is sooooo hard to let go of the dreams you had for your child. You’re an incredible mom. It’s ok to breakdown every once in a while. In fact, I encourage it. We aren’t super humans. Just human. Big hugs!



  6. Emma Fahy Davis on March 9, 2014 at 8:43 am

    There’s a whole cycle of grief around accepting that your child is not ‘typical’, it’s been nearly five years since we had a formal diagnosis here (and if I’m honest, another two years of knowing but not acknowledging before that) and I still sometimes find myself spinning that damn wheel. Most days, I have acceptance, I’ve made my peace with it, but then there are the days when I’m not so okay – when anger, sadness and guilt creep in and threaten to swallow me whole. It helps so much to know I’m not alone in this xx



  7. Shannon on March 9, 2014 at 12:21 pm

    I am so sorry! Can I make a recommendation. Visit the website http://www.ahaparenting.com/ Honestly I have been to so many sites and read so many articles on parenting but this one made all the difference. Not only that, but since the articles are based in science and studies I actually got hubs to pay attention too. There are some great articles about parenting strong willed children and dealing with tantrums etc. Best of luck. It is really hard when your one partner in all this is not on the same page as you but remember YOU are in control. Cooper is not the child you want him to be, but you can change that, and you can change yourself to make it work. Good luck!



    • Avatar photo findingcoopersvoice on March 9, 2014 at 5:15 pm

      Thank you Shannon! I am going to check this out today.



      • Shannon on March 9, 2014 at 6:26 pm

        I can’t imagine what it’s like working with a child with special needs, but in the vase of animals the trick is to treat them just the way you would because ifbyoi feel sorry for them and spoil them you “spoil” them. Hugs!



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