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To the Parent Whose Child Was Just Diagnosed With Apert Syndrome

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Maybe you’ve known about Apert syndrome for a while and have been slowly preparing yourself for your child’s arrival. Perhaps it was unknown to you prenatally, and you were completely taken aback when your child was born with the features of Apert: mitten hands, fused toes and a misshapen head. Either way, life has been forever changed now that your son or daughter has officially received the diagnosis, and you need that lighthouse as your beacon right now.

First of all, breathe. It really is going to be OK.

little girl with apert syndrome

That’s not just a worn platitude I’m saying to calm your nerves. It’s the truth. Having a child with Apert syndrome isn’t easy, but the journey gets better because you change.  Your attitude changes. Your perception changes. Everything about Apert will shift from a burden to a blessing. And, at some point down the road, you will see your child rather than the diagnosis. That alone is cause for your joy, and when it happens, you won’t know it right away.

But when you look back on your journey, you will smile to yourself and tell another new Apert mom or dad, “Hey, someday it’s going to be OK.”

That being said, you need to know that you aren’t alone. The Apert family is ready and eager to welcome you into its fold.  Trust me, I know, because everyone I’ve been privileged to meet in this community has become my family at the heart level. In many ways, they will be more family to you than your blood relatives, not because your relatives don’t genuinely care about what you are going through, but because they can’t possibly understand what it’s like. But your Apert family does. They are moms and dads, kids and grandkids, adults and seniors. They are friends and mentors, counselors and nurses, healers and advocates. 

You will need them. Cling to your Apert family. Start as soon as your child is born, or shortly thereafter. Oh, I realize it seems to be the worst possible time to make these connections, but they will be your lifeline when, out of nowhere, you feel suffocated and confused, angry or overwhelmed.  Your Apert family is there to listen, share, offer prayers and advice (but only when solicited), and they will rally with you. They’ve been there. Grasp their strength when yours is depleted. Find in them the courage and encouragement you need to keep moving forward – for your sake and the sake of your child – because there will be days when you have none.

And on those days when life seems to be wasting away and you have no idea how you will make it through, do not give up hope.  It seems flimsy and clichéd to say such a thing, but believe me, I have been there.  I have been in the pits of darkness with this disease, because it is so mysterious, but hope is what I cling to when all else fades away into oblivion. Hope will be your reason, your breath, your focus. Keep it at the forefront, and you will be able and willing to confront whatever may come – good or bad.

And the bad will come.  Don’t dwell on it, but expect it.  Allow it to be in the back of your mind, because it’s a reality. But when the bad arrives, remember that “this, too, shall pass” and “all will be well, and all manner of things shall be well.” These are not meaningless words. They are truth, and they will guide you through the murky waters of caregiving. 

The bad days or weeks or months will remind you of the goodness that still exists, somewhere, in the midst of the struggle, and then you wait for the good to return to you.

The good times will not last, either, so don’t ride on the hope that “this time, things will be different,” because they won’t. Wait until another surgery hits, and you will find yourself near despair if you live according to the fallacy that goodness lasts, too.  The key to acquiring peace in the throes of Apert syndrome isn’t so much in riding the wave of good or bad days and months, but it is in living in the present moment and finding even small blessings in each day. 

little girls with apert syndrome

Your child is a blessing and a gift to the world.  Do not allow the world to tell you otherwise. There will be people who pity you, but don’t allow yourself to become a victim. There are enough victims in the world to fill it. What you must choose is victory, knowing it will not be achieved without struggle and pain. But your child is far from the burden others believe s/he is. Remember that. Relish in his/her laugh. Enjoy the moments you share together in unbridled joy. They may be few or many, but they are treasures and will contribute to expanding your heart far beyond imagination.

Finally, remember life is a journey. No one else can live it for you, nor can you live someone else’s. We are not meant to judge and be judged, but it still happens. Be OK with that. Be aware of who you are – warts and all – but without labeling yourself or anyone else, especially your child.  Labels destroy. Your journey and your child’s journey are meant to be lived to the fullest – tragedies and triumphs together. If you live well, you will learn to love well along the way. And that is what matters above all else.

Find out more about Apert syndrome support by visiting these online communities:
Apert Syndrome Awareness,  Apert International (Apert USA),

June is Apert Syndrome Awareness Month. Spread the word and get educated to #choosekind! 

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 24, 2016
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