5.20.2012

My baby has Down's Syndrome- what does that mean?

I wanted to post this for a while- but it is hard to find the words to say... As I haven't been in your shoes exactly.

You see, my baby was born with Down's Syndrome, yes. But that was the least of our worries. My baby also had a severe heart defect, which we were told the odds of him surviving were 1 percent.

So when he was born, and I saw him... And that moment happened where I looked at him and I knew that he was different, that he had Down's Syndrome... It was followed up quickly by him being taken away from my arms to be stabilized and to be prepared for heart surgery. So- my moment of "How is Down's Syndrome going to effect our lives?" Went instantly from that- to "How are we going to save my son's life?" I didn't have to grieve for the chromosomally typical child that I had envisioned- because I hadn't envisioned a healthy child in my world. I'd envisioned, for half of our pregnancy... A baby with a severe heart abnormality. (several of them, really).

So as the months have progressed- I have spent a lot of time researching Down's Syndrome. I have found a lot of sweet, yet useless information. Most of it is bent around telling parent's that it's not the worst thing that has ever happened.. But I already knew that.

My son has been in the hospital for half of his life- but not because he has Down's Syndrome. Because he has a heart defect that happens to children who don't have Down's Syndrome too.

I haven't been able to see all of his milestones, but let me tell you...

No, it's not the end of the hopes and dreams that you have for your little one. Yes, they aren't going to be like other kids... But in most ways- they are exactly like other kids.

If you had a child in hopes that your little one would grow up and live a life that you had planned out for them, yes, you probably are in a great deal of hurt right now.. But the fact is... Being a parent is not at all about raising them to be just like you. It's about raising them to be the best 'them' that they can be. For Down's Syndrome, the limits that were put on them in the 50's are not the limits that are true for them today.

You see, back in the day- Down's Syndrome babies were written off, institutionalized with hundreds of other babies with numerous developmental issues (and adults too, sadly)- and they were left alone much of the time in cribs, where nothing was expected of them. They were hardly cared for, experimented on, and not taught much at all.

So back in the day, they didn't have any expectations.

As I've learned in the past months.. Now is much different.

Your child has the potential to read, write, do math, science, and to become whoever it is they want to be. Actors, musicians, dancers, teachers (yes!), managers, store owners, or just to be a greeter... They have so much potential.

That doesn't mean that they won't have a severe disability. There is always a chance that they will not function high- though it is shown that with early intervention and hard work, they will live a typical childhood... With moods and love and hurt feelings and happiness.

What you can expect from your baby- is a baby. A baby who probably is going to need a little extra tender love and care to get to the milestones that other babies will get to with ease. You can expect to look at other babies their age and feel a little pang on occasion, knowing that your little one is not 'the same'.. But then- you can expect something even greater. Looking at your little one and realize that you were given EXACTLY what you needed. A little bundle of perfection- even in their imperfectness.

You can expect to fall head over heels in love with them- and you can expect to wonder how you had never known a love like this. A love that is entirely built on just love- not expectations- not promises of tomorrow.. But on today.

Downs Syndrome is a part of who Gabe is, but it doesn't define him. He defines himself- his personality... His likes and dislikes.

That doesn't mean it's not okay to be scared, to wonder, to feel those 'pangs' when you see other people's children that are more advanced... But I promise you one thing... At some point- maybe not now- but at some point, you are going to look at your child and realize that they are exactly what you needed and wanted- you just didn't know it before.

Every time the possibility of Gabe's death has snuck up- two things cross my mind. First, I can't live without Gabe... and second... I want to keep Gabe AND his Down's Syndrome in my world. That doesn't mean that I want my son to not be typical, or that I want him to not live a full and happy life. I want the perspective that Gabe offers us to never leave us. The perspective of beauty in imperfection. In being imperfectly perfect.

The perspective of love- selfless and pure love.

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