Husband, It Might Always Be This Hard

My husband and I are, in a sense, new to this role of being special needs parents.

Both of our children have fragile x syndrome and although our boys were born with this genetic condition, we didn’t know how significant our 2 year old son’s delays were until this past summer when Caleb’s genetic results came back. A few months after receiving Caleb’s results, we got news of Ben’s diagnosis as well.

Both of our boys have full mutations of fragile x syndrome which causes them to have significant developmental delays. Needless to say, these past few months have been a whirlwind and everyday continues to be, but that’s why I am so thankful to have my husband.

Everyday we have to deal with the chaos of being working parents to two little boys which is hectic enough, but these two boys also happen to have intellectual disabilities that will very likely make us their caretakers until we are elderly and physically unable to do so.

While leaning into these new roles of ours, we both have constant reminders of all the things that will be different for our boys compared to other kids their age. It’s heartbreaking and my husband and I have been a team, right there for each other when the other one is reeling, and there when we both are and all we can do is hold each other and cry.

Even though we are always thinking about how different our boys’ futures will be then what we expected, what most parents expect, we rarely stop to think about how different our marriage and future as a couple will be.

We barely stop to think about how this marriage now has two other people added to it, and their priorities will always come before ours, and we most likely will not have a retirement phase we envisioned where we travel the country together sipping drinks by a campfire, taking in all the world has to offer while walking hand in hand enjoying each other’s company.

There will always be two other hands to hold, but I’m so thankful my husband is there to share this love with me and to acknowledge that it may always be this hard.

Lately, I have seen friends on social media sharing a viral video that includes a video montage of different couples bustling through the hectic scenarios that parents of young children find themselves in, all while words flash across the screen about how life won’t always be this chaotic. They won’t always be this tired, and soon their kids will be grown up and won’t need them so much and maybe then they’ll have time for each other.

The video ends on a happy reminder to enjoy this crazy time because kids are only little once.

Being a special needs parent and seeing these kinds of videos shared over and over again…it stings. Because for us, it will always be this hard.

So, to my husband, who I am so grateful for, here’s my letter to you:

Dear Husband,

It might always be this hard.

We might always wake up perpetually exhausted, wondering how we can run on such little sleep. And we may never get back the amount of date nights we took before we became parents.

We might always have most of our couple time on the couch in front of the TV because we’re too tired to go out or to worried to leave our boys with others for a romantic vacation getaway.

We may always feel stressed and overwhelmed fighting for our boys to have rich and meaningful lives in a world that doesn’t always feel the same way about them as we do.

Yes, life might always be this hard.

So, thank you for always showing up ready to take on the world with me, ready to listen to information about another article I’ve read, another story I’ve heard, ready to go to another appointment, try a new technique, a new therapy, ready to go to another evaluation, or get us all through another stressful outing.

Thank you for making life seem normal for moments when you rough house with our boys and make it so I can’t see the fragile x, only their beautiful smiles full of joy and laughter, thank you for making life seem normal for moments.

But most of all, thank you to committing to this ever stressful, ever chaotic, ever overwhelming, fantastic, wonderful, heartbreaking, joyous, and beautiful life together with me and our boys.

Written by, Carol Williams

My name is Carol Williams. I am a mom, a wife, and a teacher. I am working on becoming an advocate, a mom who speaks up, and a teacher who is more and more understanding of students’ individual needs. You can follow my blog at https://carolwilliams1618.wordpress.com/

(Editor’s Note: This article was provided by Carol Williams and is part of Cooper’s, ‘I’m Thankful For You’ Campaign.)

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