As Long As It’s Healthy - by Kate Leong

What I’m about to share is a topic that I have wanted to blog about and talk about since my twins were born.  I have hesitated, because I am not inherently a graceful speaker or writer (truly, if you know me, you know that I am a blunt person), and I feel strongly that this topic deserves to be conveyed with grace.

I got my wish when one of my favorite strangers, Kate Leong, whom I’ve quoted in the past, reposted an earlier post that said it as beautifully as could be.  Yes, she wrote my heart out yet again.  Rather than basically rewrite what she has already written so perfectly, I figured I would share the entire post, because everyone needs to read this.

As Long As It’s Healthy – by Kate Leong

We've all heard the phrase...and maybe some of you have even uttered it...

"As long as it's healthy!"

Usually this comes up when a woman is pregnant. "Do you know what you're having? A boy or a girl?" and the Mother will reply, "I don't. And I don't care - as long as it's healthy!"

For some reason, this phrase has always tugged at my heart...even LONG before I had children of my own.

Everyone wishes for a healthy baby. Of course they do. The phrase, in itself, is not a rude thing to say. It's become a universal catch phrase - and the intentions behind it are more ill-thought than ill-intentioned. We all wish for ourselves...and each other...and for the unborn baby...health.

But what if we don't get what we wish for? What then...

Today is the first ever "World Cerebral Palsy Day". It's a day that focuses on people with CP from all over the world. It's not just a day to bring awareness and education...but it's also a way for people with CP to let the world know how they want their lives to change. Today I will be sharing private home movies that I've never shared with anyone. (And I humbly ask for your sensitivity...)

I have been Gavin's "spokesmom" since the day he was born. I look forward to the day that he can tell me to stop talking for him - that I'm getting it all wrong. But until then, I will continue to do my part to speak up for him, speak out about him...and change people's perceptions and attitudes. One person at a time. Gavin has a diagnosis of Cerebral Palsy, but that is truly a small part of his life story thus far. If you are a regular reader of this journal of mine, you've already watched him accomplish far more than what we were told to expect.

I never cared for the expression "As long as it's healthy" before Gavin. But since Gavin's birth, the words have taken on a whole new meaning. I think, for the most part, the expression is used as a way to stay hopeful during a pregnancy. Everyone wishes the best for their children and their families. And we were no different.

This is me...standing in Gavin's nursery...right before we left for the hospital. Ed thought I was crazy, but I wanted to take a minute to videotape ourselves for the last time as a family of two (and one adorable dog). We had no way of knowing that I wouldn't be back in that room with my baby for a month...

The universal phrase... "As long as it's healthy"... well, one could argue that didn't happen for us. The silence and rushing around in the delivery room was a pretty good indication that all was not well.

I signed up to be a Mom. Just as I wouldn't say, "As long as it's smart." or "As long as it's good looking." or "As long as it's straight."...I didn't say "As long as it's healthy." To be honest, now that I know so much about genetics and chromosomes and all the thousands of things that could go wrong - I think it's a miracle that any child is born "perfect" or "healthy."

Once Gavin was born, I went right into Mom mode. I didn't feel disappointed or 'jipped'... I felt protective and concerned. And love. Although to this day I am haunted by this particular moment caught on film. I told Ed all through the pregnancy that I wanted a photo of Gavin in the delivery room. He took his job seriously and asked the nurse before Gavin was whisked to me and then to the NICU. I should have told him to forget it. I should have said to the nurses that I could meet Gavin later. Keep the oxygen on him, I should have said. I wonder if, in my selfishness for a hello and a picture, I deprived Gavin from time without the oxygen. I have been reassured a million times, but it's one of my biggest regrets.

As Ed and I spent time in the NICU that would become our home, we were overjoyed getting to know our son. Ed had never held a baby that small - or changed a diaper, ever. He jumped right in and did it all. He even gave Gavin my colostrum as soon as it came in. We called it "Liquid Gold."

I spent a lot of time doing Kangaroo Care and pumping breast milk so he would grow and get stronger and get closer and closer to going home.

For all intents and purposes, Gavin was many people's worst fear. Can you imagine? People who would say, "As long as it's healthy" didn't mean this.

So to all of you who are pregnant I say - don't be afraid to be me. And to all of you who are sitting in the NICU next to an isolette - praying that they will tell you that your baby is fine - healthy - not 'imperfect'... don't be afraid to have a Gavin. And to those of you who just got the diagnosis - Cerebral Palsy. Do not despair! Gavin, as many of you know, is the joy of our lives...and many others. He is in many ways just like other kids his age! He has favorite foods and favorite movies and favorite books and songs. He loves crazy amusement rides and the ocean. He adores his Daddy and his little brother. He is now making friends and riding a bus to school.

When we sign up to have children, we aren't guaranteed anything. They could be born with a disability or develop one years later. They could be born with a defect or develop defects of character as adults. They could be born in perfect health, or have a serious illness. The important thing is - they are ours.

We left Gavin's nursery filled with hope on September 28th, 2007. We welcomed him into the world with hope on September 29th. We brought him home for the first time on October 28th, 2007 and the three of us (and one adorable dog) learned together how to navigate our new world. And then six days before Gavin's first birthday, we were told he had Cerebral Palsy. But what did that mean, exactly? Nothing much, really. It sure didn't change the way we were caring for him up to that moment.

When I stop to think about that silly phrase, "As long as it's healthy," it kinda makes me sad. Because if I had wished for that...and my wish had been granted...none of us would have the honor of knowing Gavin.

That - and not a diagnosis - would be the biggest tragedy of all.

Wouldn't you agree?

Our Ari.  Healthy?  Debatable.  Perfect?  Indisputable.