You Boys have made my Heart Whole

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Caleb and Ben, my sweet little boys, you both mean the world to me. You’ll never even know.

You wake up each day with big smiley grins. Those smiles melt my heart, and I live for them.

You both have fragile x syndrome; there’s no denying it runs our household. And although it’s been quite far our biggest challenge, it’s shown me the most amazing abilities you both hold within.

When some say they’ve worked hard for everything in their life, they have no idea.

You two have and will work every second of every day for the typical tasks others take for granted.

Some say that kids like you can’t do much and need to be kept away so you don’t interfere with other children’s learning and play.

I still can’t believe people like this exist in the world. These people don’t see the joy you bring to the world and how you’re changing it everyday.

You boys will spread only love, kindness, and acceptance.

You’ll make the world a better place just by being in it.

Sometimes it may seem that I’m sad or angry. Please know, Caleb and Ben, this comes from the world we live in and not you two.

You boys have made my heart whole and for that, I am forever grateful.

When I seem sad, it’s because I’m frustrated that I don’t see kids like you as a big part of schools, communities, or even being represented in the media.

When I’m angry, it’s because I don’t see consideration for kids like you in our society; a one hour sensory friendly event that takes place every few months is not enough for kids to feel included.

That pain comes from the isolation of feeling like our family is alone, like we’re outcasts, but we’re not.

I’m finding a whole group of families like ours who see the joy and wonderfulness that is uniquely you two.

I have constant reminders that this world may often try to ignore kids with special needs, but there’s so many of us out there fighting to change that.

Social media is bringing us together, and we’re showing the world how amazing you guys are. If people just slow down and meet you at your level, they will see pure and undeniable beauty and kindness.

There are so many wonderful people who already see your joy, who light up when they see you two, and are joining in on spreading awareness.

The world is changing; I can see it slowly happening, and you two will be a part of that.

You two will share your love of the simple things in life like trains, the Itsy Bitsy Spider, and Goodnight Moon and remind us all to slow down and enjoy all that life has to offer.

You two make me smile everyday when I see those little hands flapping and those feet going a mile a minute in sheer joy over a reading of Chomp Goes the Alligator; that happiness over such simplicity is a virtue most people will never come close to in their lives.

You two will become members of a community, and you will help spread acceptance. You have both already made me so proud. Caleb, you are only 3, going to school full time, and thriving.

You say so much without ever speaking a word. Ben, you are starting your journey with therapies and are amazing me with your abilities; your laughter is contagious, and your enthusiasm is inspiring.

You boys will have very different paths than I ever envisioned for my children, but you will bring more joy than I could have ever imagined, more pride than I could ever have dreamed of, and more love as a mother than I could have ever hoped for.

I love you both more than you’ll ever know.

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’re 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 Discovering Fragile X.

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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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