Wednesday, March 14, 2012

I Miss You, Buddy

This is the hardest post I've ever written. It's taken me awhile to write it and I've had to write it in bits and pieces. Thanks for understanding how personal this post is for me.

Wow. Fourteen Years. I can't believe it.

I can't believe that 14 years ago, my life changed so drastically.

I can't believe that 14 years ago my world as I knew it came to an end.

I can't believe that 14 years ago today, my brother died.

Left to Right: My Mom holding my brother Michael, my dad with my sister on his shoulders. And that super cute kid on the right, yeah, that's me!

I don't talk much about my brother here. But, I can tell you, He was the absolute best brother a girl could have. He taught me to love unconditionally. He taught me to see in people what others don't. He taught me how to take everyone as they are. He never said a word, but his laugh said more than words ever could. He never took a step, but he changed more lives than anyone I know. He helped me to learn to trust God and to accept when God says "no." He changed my life, he made me who I am today in so many ways. He is gone, but not forgotten. Today, I'm going to say the things that have gone unsaid.

My brother was born May 26, 1989. He was the most perfect, beautiful baby. When he was born, my parents didn't know he was anything other than perfect, but we would eventually learn that he had Downs Syndrome. He started out pretty normal for a Downs child, but then when he was only 7 months old he would stop breathing and he ended up with a lot of mental and physical retardation. He essentially stopped developing as a 7 month old.

Things were a lot different for me growing up then my friends. It was harder for us to do somethings because he was in a wheelchair. But we did a lot of things anyways. And despite the doctors saying he was going to be a vegetable, I can tell you all the ways he interacted with us. He knew when you talked to him. He would follow your voice with his eyes and would turn his head. He laughed if you played with him. He giggled so hard on bumpy roads. Blueberry syrup from IHOP was his favorite. And he liked mashed potatoes.

He proved the doctors wrong so many times, and we enjoyed each of those moment as a family. I want to tell you who he was, and yet I feel that all I'm offering you is a single drop of the ocean. And today, my heart hurts. I miss him.

I've been in a funk for about a week and half. I usually don't realize until the 15th why it just kind of sneaks up on me now. Normal is now life without him. I still miss him so much. But I miss him in a pleasant way, if that can even make sense. I can think of him and not hurt. I frequently think about things he would have enjoyed and wish I could tell him.

My brother had Downs Syndrome and was the most amazing person I've ever met. So, you can imagine how I felt today when I read an article online where parents sued their doctor for a wrongful birth. Because their daughter was found to have Downs Syndrome after her birth. Yes, they did genetic testing and it came back that she didn't have Downs and even though they now have this amazing child, they are upset that they couldn't kill her.

My heart is broken.

Literally, broken. I want to weep.

I want to weep because I know how AMAZING life is with a Downs child. Seriously, best thing ever. Was it hard, you betcha. Would any of us trade it for...anything? Oh my, NO! Was our life different? Yes. But, different is just that different. Different is not bad!

The most amazing thing is how despite all of his handicaps, he still changed the lives of others. No one he went to school with thought any differently of him. Matter of fact, they LOVED to help him. They wanted to push him to the playground. They wanted to help him color. They knew him even though he never spoke a word. He has a legacy far greater than many people.

Sadly, 90% of children with Downs Syndrome are never allowed to impact the people around them. 90% of children with Downs Syndrome are aborted.

My heart is broken.

How do people see this as ok?  I was reading on a website regarding Down's Syndrome where a girl named Bridget (who has Down's) made the very valid point that aborting babies with Down's is a form of genocide - the systematic killing of a people or nation. I had never thought of it that way, but she is so very right! And she expressed herself so amazingly well. And yet, as a society 90% of these amazing people are never given a chance.

So, today, I am sad for so many reasons.

I am sad that my brother died.

I am sad that those people won that lawsuit. (And I hope it is appealed and the decision is reversed!)

But, I am most sadden that so many amazing children are never given the chance to make a difference in the world. You can not know a child with Down's Syndrome and not see how amazing they are!

If you have any questions about Downs feel free to ask me. You can use the comments below or you can send me an email at bettyblogs1114 {at} gmail {dot} com. I'll do my best to answer what I can.

Or, you can check out Noah's Dad. He and his pediatrician wife gave birth to a baby with Down's and following their story is amazing and enlightening. They do a great job of talking about the medical side and the day to day side.

Either way, just try to learn a little bit of how amazing people with Down's Syndrome can be!


Emily Caroline Wright said...

That court case makes me so sad and angry. I have a cousin with Downs and he is absolutely the happiest person I know. And it's infectious! He's also one of the reasons I'm pursuing speech therapy as a career. It breaks my heart to imagine my family without him.

I know this post was difficult to write, but thank you for writing it.

Katie said...

90 percent?! I want to break down and cry at work. This makes me so sad. My husband's first cousin, Brandon, has Downs and is one of the sweetest souls I've ever met. Thank you for sharing your story, and bringing awareness to this important issue.

Rebekah said...

Thank you for sharing something so personal. I can't imagine that court case! A child is a child. No matter what.

Lindsay said...

This had me in tear, I wish I could have known him! And that article about the genocide is SO true, I never thought of it like that either... :(

Mia Maree said...

Betty this was beautiful. I am so sorry you lost your brother. Even if it was years ago, I can't imagine the pain. It seems like you are an amazing sister :-) My heart hurts for this 90%.

Melissa said...

I am horrified... I had no idea about that court case. It makes me SICK.

I am so very sorry about you losing your brother. Am praying for you tonight. HUGS!

Another good blog is Enjoying the Small Things ( She has two daughters, the youngest has down's. The birth story is a tear jerker - she did not know the baby had down's until she was born. But it is a beautiful story. And she wrote a book now about it.

Anonymous said...

I read about that case a few days ago and my friend and I thought, imagine when this girl grows up and reads that her parents did not want her. They have ruined her life already with their selfishness. Thank you for sharing this. I'm sure it's very hard for you but thank you for shedding light on this.

Anonymous said...

Hey Mare, Wow it has been a long time since I have heard about your brother. I really wish I could have met him. I hope that you week is going well. I love and miss you terribly.

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