How My Daughter's Rare Genetic Disorder Bizarrely Enriched Our Lives

In “The Godfather: Part II,” Michael Corleone shares some wise words gleaned from his father: “Keep your friends close but your enemies closer.”

Well, I’m keeping you closer.

Closer than I’ve ever kept anything before.

I’d never even heard of you, Cornelia de Lange syndrome, until five years ago when my daughter, Hannah, (and you) came into our lives.

Ever since then, each and every day I’ve been keeping a close eye on you. I’ve probably read everything there is to know about you right now and, as a result, have been able to educate the professionals involved in Hannah’s care and put things in place to elude some facets of your persona that I can suppress – like ensuring she has a healthy, well-balanced diet. Sure, you’d thrive off junk food, but you ain’t getting it here at Broccoli HQ!

As long as I breathe, I’ll never, ever forgive what you’ve done (and are doing) to my baby. You weren’t invited to the party, but you gate-crashed… and it looks like you’re here to stay. I want to make it clear to you that you’re not welcome and never will be.

But while you crushed my aspirations, completely turned our lives upside down and almost broke my heart, you’ll never beat us. You’ll never have the upper hand. Because you’ve made me stronger than I ever imagined I could be.

Initially, you tortured me and kicked me around until I felt I could take no more. Then, when I managed to come up for air, I got right back up and stared you in the face. Because this special needs mama never goes down in a fight. Not when it involves my baby girl.

Once I’d afforded myself the time to grieve for the life I assumed we’d have, I now realize you didn’t ruin our lives at all.

Bizarrely, you enriched them.

I have a child. A beautiful, quirky, scrumptious kid who makes my heart melt every single day.

A child who I never thought I’d be blessed to take care of.

She is my love, my world. She completes me.

I’ve seen this kid in her five years of life being put through stuff no one should ever have to go through. She’s been given so many labels: Cornelia de Lange syndrome, global developmental delay, hearing difficulties, no speech and extremely limited communication skills, a heart defect, a cleft palate, skeletal “abnormalities,” sensory processing disorder, autistic traits, self-harming behaviors – the list is endless.

I won’t allow any of them to define her, because she’s a kid. In our world, kids are kids, regardless of whether they have a disability.

While you affect Hannah in so many ways, you’ll never be able to take away her sense of humor. Sure, you stop her from speaking or sometimes communicating effectively enough to tell us how she’s feeling or what she wants, but boy, she’s funny. So funny. She has the potential to leave a trail of chaos wherever she goes. She’s defiant and a little bit naughty sometimes too. She sticks her finger up her nose when she’s tired, she blows raspberries and laughs when she farts… like kids do.

Hannah has a zest for life that I’ve never seen in any other person. She’s fearless. She throws herself into every new experience with an enthusiasm that astounds me. She’s unforgettable – she doesn’t blend into the background – she makes her presence known. And wow, even though I’m her mama, I can’t help but mention that she’s so cute!

anne It’s evidently clear that you’re not defeating her. For now, anyway.

Five years ago, you threw us into a strange new world — a world that was initially pretty scary, without any blue sky. But it’s a world that moves at a much slower pace, one that allows me to notice all those little developments in Hannah that I may have just taken for granted otherwise.

Through you, I’ve met some wonderful, beautiful, awe inspiring children — children who in their short lives have experienced far more than anyone should ever have to endure and, as a result, I’ve met (and become friends with) a whole load of other parents in a similar position as me. They made me realize I’m not alone.

You helped me realize what actually matters in life. You helped me prioritize.

Our lives may be affected by extra conundrums – more so than the average parent – and there’ll be days that will be challenging and stressful and downright frustrating, I realize now this world can be magical and beautiful at times.

This world, our world, does have sunshine and blue skies.

Sure, if I could find a cure that’d eradicate you, I’d do it in a heartbeat. I want the best for my baby. I want her to be happy and healthy. But as she grows older and transitions into adulthood, “happy and healthy” isn’t going to be enough; she has to be able to survive too. She has to be able to protect herself, and right now that’s something she can’t do. Right now, that’s my job.

We’re on a journey, and who knows where it’ll take us. No one can predict it. But like the musician Edwyn Collins rightly said following his cerebral hemorrhage, “The possibilities are endless.” And I’ll continue to seek out opportunities that’ll enrich her life.

Hannah’s path may not be an easy one, but hopefully she’ll have me to hold her hand along at least some of the way. And between us, we make a formidable team!

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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