Dear Friends and Family, It’s Been a While

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Dear Friends & Family,

A few months ago, I felt a small cyst in my right breast and still haven’t been able to see a doctor.

This brought on a harsh reality for me as a mother of a child with special needs: I don’t have time to be sick, to go to my own appointments, or to die.

I never thought about that until today.

I don’t have time to get depressed or get my own therapy. I’m so busy holding it together for my daughter that it has completely and utterly consumed my entire life.

I tell myself it is probably nothing as it has always been nothing in the past; I just had a round of bloodwork that checked out okay. But what if it wasn’t?

What would happen if it wasn’t? I thought about this today and have never felt more alone.

It’s been a while.

I’m not sure how long exactly because I’ve been a prisoner to my own life as a caregiver to Ally. You know, that beautiful little girl you say is my joy on this Earth? And she is, but she has consumed me and the weeks quickly turned into months and years. But I want you to know that I miss you all.

I am fully aware now that conversations with me feel depressing or uncomfortable as you try to help me solve my problems.

My job loss. My lack of childcare. Autism. Money. Therapy. Meltdowns. Silence.

You stopped listening and I’ve pushed you away.

At this point, I feel as though I’ve faded into the wallpaper since the phone calls, texts, even liking my photos on Instagram have all faded away. Some have even stopped.

There is no solution for me right now so I don’t need you to solve my problems. I belong with my daughter.

It’s not what I want and it makes me sad. I’m frozen in time and I pray that it isn’t forever. These are my burdens, no one else’s. I’m just here waving to you from my island hoping that you’ll wave back.

As the months blend into years, I realized how far apart we have become and maybe it is my fault.

Family and Friends want to hear that everything is great, kind of like our Facebook relationships. Snapshots of the good times, not roadkill—which is what my life sometimes feels like.

I’m going to try harder to say that everything is wonderful. That we are all doing fine.

Teachers and therapists want to hear that we are working on the things that are less desirable. Fellow special needs parents are the only ones who can handle the truth, understand it, relate to it in a way that doesn’t make us all uncomfortable.

I’m working on compartmentalizing my life into sections. Those sections include not dragging everyone into this black hole with me.

I’ll even try not to talk about it at all if you come back.  

I like to consider myself a low maintenance friend. A text or a phone call will suffice.

Wine and painting sound fun but I can’t shell out $40 for that right now but I’d still like an invite. Sometimes that means more than actually going.

To know that I am not completely forgotten about.

Sometimes it’s not even going out, its just being invited. Called. Acknowledged. I feel like I am stranded on Autism Island, on a trip I never planned.

A small text is enough hope for someone stranded to feel that last sense of maybe it will be okay.

I need it to be okay.

What am I up to? Well, nothing.

I am wearing pajamas and I’ve seen every Christmas movie Hallmark has aired and am confident I could make every last craft and recipe featured on their Home and Family segment.

I barely leave the house and will probably go off the deep end unless I start talking to people other than myself and my four-year-old.

Please reach out, Happy New Year.

Written by, Laura Wingler

Mischief Momma has a 4-year-old daughter and 13-year-old stepson, both on the autism spectrum. She writes about the joys, humor, and struggles of raising children who are different, and navigating obstacles like childcare, education, and work. She published a collection of prose earlier this year called “Funny Little Girl” (available on Amazon). This mom is currently sitting at rock bottom trying to find her way back…TBD! Check out her blog at Mischief Momma.

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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.

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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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1 Comment

  1. Astrogal on January 8, 2019 at 4:33 pm

    First of all, your daughter is adorably cute! I am not a special needs mom, just a regular mom, but I still read this blog to educate myself and gain empathy for those whose parenting life is not as easy as mind and to learn about the real honest challenges of parenting special needs kids. I don’t understand how people can turn away from you like that knowing you are in desperate need of help. I don’t think I would do that, I wouldn’t mind at all hearing about all the crap. I don’t like fake people who present a perfect happy image to the world because everyone has a cross to bear, some heavier than others, but cut the BS and be real! That’s why I like reading this blog. I’m sorry you are going through this but thank you for sharing your truth.