Let’s get personal

Last night marked an important night in my daughter’s life, and in ours as a family. It was a moment I wasn’t sure we’d ever have, a moment I mourned the loss of five long years ago.

The history…

My pregnancy, and daughter’s subsequent birth, though normal, were preceded by miscarriages that made every step anxiety producing, as if I waited for the other shoe to drop, somehow knowing before it did that it would happen.

A few days shy of her seven month birthday, it did.

I still remember the geneticist’s phone call—the only question that mattered spilling off my tongue, will this take her life? and the shattering of everything I held dear at her clinical yes. Terms such as profound retardation (and please do not ever mistake the appropriate medical use of that word for the inappropriate derogatory mis-use of its variant…but that is another post for another day); multiple system issues, heart, kidneys, bowels, brain; all of these things were but a dim echo behind the scream that started the precise second I was told my baby’s issues would eventually claim her life.

Flash forward to last night…

Less than twenty-four hours ago I had a date with a princess. Decked out in our finest, my husband and I were blessed to attend our daughter’s first ever school dance.

True, the gym wasn’t filled with boys and girls standing at opposite corners waiting for awkward invitations to dance, more adults than kids were present, and wheelchairs the norm, but let me tell you what it did have…

Smiles—on almost every face present. And not just polite, I have to be here so I’m making the most of it smiles, but full on face-cracking, joy-inducing, joy filled, smiles that could’ve lit up the entire city of Manhattan for their brightness. Kids of all ages, parents, school staff—the celebration rivaled that of any Kardashian wedding; the mass of gyrating hips would’ve done Dancing with the Stars proud; and the best part of it all, of course, my beautiful daughter, perfect in all her imperfections.

It was a night dreams are made of.

So how did I get from there to here?

You see, something happened to me between that time of darkness and now, something I’m sure that surprises most people who have never tread similar paths.

I learned.

Through fear of her death, my daughter taught me how to live. Not in the let’s go skydiving, cliff-jumping, hey you only live once way, but in a manner that conveys a soul deep understanding that this is what life is truly about. I’m not suggesting I’m no longer sad, don’t have moments where I curse her diagnosis as if it were a living, breathing person, or that I don’t still live in terror every.single.time an illness crosses that invisible line that takes a cold into seizure territory. Rather, my point is that, inherent heartache; social injustices that need fixing; evils such as war, torture, rape; horrible things that don’t even require us to look too far from home to find; these all exist…everywhere. And right alongside it, there is also inherent goodness.

My daughter is that. Inherent goodness. And I am blessed to live with her every day. There’s no malice in her being, not an ounce of jealousy in her heart, only love.

And she brings the same out in every person she interacts with.

I’ll never forget the day I took her to one of her million-and-one doctor’s appointments. The office was crazy busy, sick kids everywhere, frazzled nurses trying to care for the masses while patients were shuffled from room to room to accommodate everyone—a prime time, if ever, for staff to be short with us: the family who requires so much extra for successful tests. Yet, at the end of forty-five minutes of near constant singing to keep my daughter calm enough for accurate results, the nurse turns to me as she’s leaving and says, “Thank you so much for bringing her in. I needed your daughter’s light to shine on me today.”

Some people look at our life and see limitations. They think I’m so glad that’s not me, I could never do that, not even trying to hide their pity—a sentiment that never fails to astound me. I understand the heart of it, no one wants to send their fourteen-month-old into the operating room for open heart surgery, but what floors me is that’s all people see, ignoring the innumerable ways she makes my life richer, fuller. She may not talk; she may not walk; and she may not ever; but she loves with an abandon that puts all my meager attempts to shame. Her love is what inspired me to write, and a love like it is the common thread throughout my current work-in-progress Morrow’s Horizon. Though a romance, and an erotic one at that, Sara Morrow’s story is more than a sexy love story. It’s a story about family, about real-life struggles, and about a little girl that unites five sisters. Tessa’s life is not my daughter’s, but her spirit very much is, and it’s one the world desperately needs to see.

Don’t we all need a little light to shine on us in our darkness?