Letting Go of the Things Beyond our Control

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We all know mothers can be portrayed as being a bit dramatic.

I am not saying I agree with that, but I do think moms, particularly new moms, put an enormous amount of pressure on themselves to raise perfect children.

Something that is completely unattainable, especially when you are a new mom trying to figure out why your child is so different than all your friends’ kids.

This was me 4 years ago, and I, of course, tried to come up with a way to “solve” these differences.

What is crazy about this, is the fact that as moms we are limited to how much we can control our children’s lives, especially if it turns out your child has special needs, like I found out with my son Caleb.

When my son was 2, I found out he had Fragile X Syndrome.

Looking back before I knew this, my need to “fix” his delays was really over the top.

Cleaning out my junk drawer the other day I found evidence of this. I came across a notebook that was filled with chicken scratch from when Caleb was just a few months old.

I flipped through and saw page after page of notes that looked like they came from a mad scientist who had not slept in days and was just on the verge of solving some challenging conundrum.

Only, the conundrum was Caleb’s lack of sleep, and I was not anywhere close to “solving” the puzzle.

You see I had read a book about setting healthy sleep patterns for my baby.

Actually, I read that plus visited just about every mommy blog and new mom support chat groups to try and figure out a way to help Caleb sleep better.

In one book, I read that I had to keep track of his sleep patterns and include all the details I could think of to help solve the mystery.

Including what he was wearing, how many ounces of formula he had, and where he slept was all extremely necessary to fix his sleep issues… and extremely crazy.

I look back at these notes and see a woman who was so lost just looking to “solve” every issue her baby had that was not typical. This need to fix things was causing me stress and laying the foundation for some permanent dark circles that I will never be able to conceal.

Yes putting down the baby books, leaving the chores aside, logging off Dr. Google, and putting away the flow chart you have drawn to decipher your baby’s sleep pattern is easier said than done when you are a new mom.

I wish someone had told me to stop!

It is important to acknowledge delays and get on top of early intervention for your child, but it is even more important to stay sane and try to enjoy the time with your baby that you will never get back.

The lack of sleep from when Caleb was a baby made me sob in the shower on an almost daily basis, but part of that sobbing came from the pressure I put on myself to find a sleep solution.

Enough tummy time, read enough stories to him and everything else I was supposed to be doing all to ensure he would “catch up” to his peers.

What lessons did I learn from that? That the universe does not care about your problem-solving skills.

Sometimes you are sent a child, or two in my case, that march to the beat of their own drum and you need to slow down and learn to guide them towards their best life which may look very different than the one you envisioned.

What helped me to learn this was having my second son, Benjamin.

By the time he was born, we were getting Caleb genetic testing for Fragile X and I found out that if Caleb tested positive then there was a 50% chance that the newborn baby in my arms had it too.

I was overwhelmed.

Yet at that moment I acknowledged there was absolutely NOTHING I could do to control that for Ben if it were the case, and it turns out, it was.

Waiting a few months on first Caleb’s testing results and then Ben’s, I stopped driving myself batty. I threw out my copy of the baby sleep book along with all the other parenting advice books and learned to just be.

With Ben’s late-night wakeups, I tried to enjoy them. I knew when he woke up he was not going back to sleep for awhile.

I would cuddle up and enjoy some late night tv with him, after all, in the morning I would be with a toddler watching ‘Moana’ on repeat.

Becoming a mom is when you learn there are some fights you are not going to win, and there are things way beyond your control; this is tenfold when it comes to special needs parenting.

I wish I could go back and tell myself, “I know you are so tired you think you will never make it out of the infancy stage alive, but the truth is you have not seen nothing yet. You think you don’t get enough sleep now but just wait until you have two little boys who have special needs and hyperactivity and long nights to ponder if they’ll be safe after you’re gone.”

“Yes it’s going to suck and there will be days you just don’t know how you’ll pick yourself up off the floor after you’ve been crying, but you will because like all moms you know your kids need you to stand back up.”

“And if you look hard enough you will find other moms in the same boat as you speaking their truth and some veteran mamas saying, ‘it’ll get easier.’”

“Yes, there may be many bumps in the road along the way, and sometimes just big huge potholes, but I promise you that you and your kiddos will be okay.”

Written by, Carol Williams

My name is Carol Williams, and I am a mom to two beautiful boys with Fragile X Syndrome. I am also a wife and a teacher. I am hoping to express some of the overwhelming emotions of this special needs journey we are on through my writing. I also want to raise awareness about Fragile X Syndrome in order to help make the world more accepting of kids like mine. You can follow our story at discoveringfx.com.

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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, subscribe for exclusive videos, 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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