Sunday, May 20, 2012

Down Syndrome is no pity party.

Today brought me a sweet reminder... about how I used to feel about Down Syndrome, and how that has all changed.  First, let me back up a bit...

Probably like some of you, I didn't grow up around anyone with DS. Those children weren't integrated into my classes as a child or teen, and anyone with that diagnosis was someone else's child. I had so many misconceptions about DS that I never knew were wrong until it became "my child". For one...

"Having a child with Down Syndrome is good reason for a pity party."

I kind of had one when we first found out Leo has DS.  I felt like people should feel sad for me.  And I sure felt sad for myself! Then one day, I shared our news with a family who already has a child (teenager, for that matter) with DS. Their reply? "Congratulations, that's awesome!" The weird thing was, they really meant it!! Honestly, I didn't understand what in the world would make them reply like that.  As time went by and I tried to process things for myself, I started researching the web and found a section in the Down Syndrome Guild of Dallas.  Parents and siblings wrote letters about having a child in their family with DS and they all talked about how wonderful it was, and how it made their lives so much better. You know what I thought?  "They must be fooling themselves... there's no way someone could be so happy about it! That has to be one of the hardest things to ever live with and they're just trying to make it look like they're happy."

Then along came Leo. And almost right away after he was born, I realized how wrong I was. How did that happen?  Simple... because he's my son. Sure, people can say "I'll love my child no matter what"... but when you find out there positively will be something different about your child, there are many fears that come along with it.  Those fears can make you feel, at first, like the diagnosis is a horrible thing that will be hard to live with. Then your little bundle arrives and everything changes. No matter how different he/she is, no matter what defects they may have that need fixing, no matter how many special needs you might be faced with... this little bundle melts your heart and steals your love like no other. Suddenly, you feel so blessed to have been chosen to care for someone so very special.

So back to my reminder today?  We attended the New Parents meeting for the Down Syndrome Guild of Dallas.  It's a wonderful support group for parents, our children with DS, and their siblings. I went to their quarterly research meeting (another post I shall make in the future...) last weekend, and today my entire family attended this special gathering together. We had the chance to hear a speaker (talking about important therapies for children with DS) and to meet other families. 

My "reminder" came in the form of a sweet family with four children, their youngest only 4 weeks old was diagnosed with Leukemia soon after birth. Then he was diagnosed with a heart defect. And, because having a trifecta seemed to be his thing, was then diagnosed with DS.  Despite that, this sweet couple had the biggest smiles on their faces, the most positive and lovely outlook, and best of all... they had the cutest little baby boy who just happens to be one of the "biggest" little fighters you will ever meet!  Then my next reminder came through another young, beautiful, sweet couple. They had a previous angel baby who only lived for one week. Despite their heartbreak, they had another sweet little one who is now six months old and just happened to be born with DS. On first impression I can immediately tell they are a loving and optimistic family who feel blessed to have one of the cutest, bright-eyed little boys ever!  My final reminder was a sweet couple whose baby is so new he is still in the hospital, only 10 days old. Being born with DS he was affected with feeding issues and had to be placed on a feeding tube. This precious couple didn't know about his diagnosis before their sweet boy was born, so the pain and fear was fresh and new on their faces. They've barely had a week to adjust to their news. With tears in their eyes, they showed us a picture of their adorable fiery-haired little one. I remember the freshness of that pain all too well... plus the fear and the pity. This sweet couple hasn't gotten past it yet, but they will. Their tears will dry and they'll feel more joyful than they ever expected.

Today, I look at our sweet Leo and I'm reminded about how things changed for me. I couldn't have been proven more wrong about something... but I was, when the pain turned into joy, fear turned into optimism, and my pity turned into a party!

love, Joyce

1 comment:

  1. Beautiful post. I think you're so right, you don't truly know how much you can love your child no matter what until you're living it.

    Leo is so blessed to have you guys.