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To the Perfectly Imperfect Special Needs Mom

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To the Perfectly (Imperfect) Special Needs Mom,

Let me tell you a little something about you…

You are the quintessential every woman. Day in and day out, you clear the way and make it possible for miracles to happen. If there were an award for “Mom Who Shines Brighter Than the Sun,” you would win it, hands down.

The world sees you juggling your life and the life of your child, making it look so meaningful and effortless. Special, even.Those who have the privilege of watching you mother believe you were chosen for this “assignment” and wonder how you’re able to keep a smile on your face and a laugh in your heart. You meet each day with a child who isn’t like all of the others, who isn’t like theirs, and yet you haven’t seemed to fall apart over it yet. Your family and friends often say, “I have no idea how you manage to handle it all so perfectly.”

Well, the fact of the matter is, you don’t. That would defy the law of gravity.

There is no special strain of DNA that enables you to give the extra care your child demands. You were not born with supernatural strength or a heart of steel or faith that never waivers. What enables you to give so much to you child is love. Good old-fashioned, uncomplicated, straight from the womb to the center of your world — love.

The same love that drives every mother. The only difference is, your love has more requirements. You have to carry your baby longer because they haven’t yet learned to walk; there are countless doctor’s appointments that must be made and endless meetings that must be had. You must be more patient, more flexible, more forgiving. More hopeful. Your ER visits may be frequent and your child’s development delayed, so you make it through. You adjust. You take it all in what looks like stride. Because you love. Your child’s happiness is your mission.

You seem like a perfect mother because you work so much harder than other mothers. But the world doesn’t see the other side. The world doesn’t get to see the imperfect side of you. The way you fall apart in the still of the night when you think about the uncertainty of your child’s future after a new diagnosis. The questions haunt you. Will my baby ever marry? Have children? Turn in a paper late to their professor or need my help practicing for the school play? More often than not, you are tired, overwhelmed and heartbroken. You are human.

Life, now means constantly struggling to find balance. Cuddling up with a good book and cup of tea in your room or an extra hour of speech therapy? A weekend getaway with your love or a weekend of doing everything? A day off work to catch up on things or a day of doctor’s appointments? You sacrifice the quiet moments more often than not because you hold the same dreams for your child as the parents of other kids. But to have any chance at seeing them come true, your child has to work harder. So you work harder. You have no other choice.

You are amazing at your 9 to 5 job. No one can tell your heart and mind are often somewhere far away, wherever your child may be. You are forever the new mom just returning to work, dealing with the sadness that you are needed somewhere else more.

And who really are you now? You sometimes wonder if your husband thinks you’ve lost “it.” And maybe you have. Because your free time is never really yours, so there is no time to find “it.” “It” is a lot of work and doesn’t seem as important anymore. Your child trumps “it” every time.

And then there are those dreams of yours, the plans you had for your life before you became a mom. You feel so guilty about wanting those things now. Partly because chasing dreams means sacrificing time with your child, and partly because it’s hard to wish for the kind of success your child may not have the chance to attain. You sometimes tell yourself you no longer matter. That God assigned you to be the mother of a child with special needs so you could put aside your own. You often get beyond those kind of thoughts, you know better — but the struggle is real. The struggle is ours.

See, these are the things I know because I am one of you. And honestly, these are the things that make me proud to be member of the “Special Needs Mom Club” — the things that set us apart from the rest of the world. Our truth. Selfishly loving our children unselfishly. The world is right to be amazed by us. We do rock. We give everything even when there is barely anything left to give. And we are in it for the long haul.

Dear Perfectly Imperfect Special Needs Mom, be proud of the weight on your shoulders. It has made you strong. It has kept you humble. The proof of it is in the gratitude you find, in the smile of the child who calls your name without ever saying a word. The child you will forever, and in every moment, pray for. Live for.

Perfectly. Imperfect.

Follow this journey on Praying4MyPreemie.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: December 4, 2015
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