Wednesday, April 14, 2010

The Siblings Of Down Syndrome

Last weekend, Mike and I had to honor of attending the regional down syndrome conference. For the most part, it was fabulous. Some sessions were better than others and learned a lot about the "little" things and some about the big things.

But one particular session really touched me.

It was a panel of three young adults that grew up with a sibling that has down syndrome and they told their story. Their view of what life was like growing up with a sibling that had Down Syndrome.

Some of it put a smile on my face. Some of it made me shed a tear. Feelings of anger, fear, joy, hope, and excitement were all felt during that 45 minutes.

It really made me think about Maggie, Gavin, and Austin and what this means to them.

It's not that I haven't thought about it because I have. Especially for Maggie. My worst fear when they were newborns was that the world would make fun of the fact that her twin sister was a....well you know. I vowed to change the thinking of the world.

During the three speeches, I heard the following:

  • Embarrassment: With their inappropriate behavior. The mere fact that they had DS

  • Jealousy: The sib with DS was "Mr. Popular" and he felt like he was in the shadow of his brother

  • Fear: Of having a child of their own with DS. Fear that they would have to care for the child when mom and dad were gone.

  • Resentment: Certain things had to be altered or changed in their life because of the child with DS
  • Frustration: Inability to communicate fully and appropriately

I guess I was in denial. I was denying the fact that Molly's siblings may feel these not so good feelings because of her. I feel that I am more aware of these emotions now.

They are all normal and I really appreciated hearing it first hand from someone who has lived it.

At the end of the day, they all embraced the "challenge" (their words, not mine) of having a sibling with Down Syndrome.

One statement made me cry (because it is so true) "Having Jake opened my eyes to a world that I wouldn't have otherwise known".


AubreyTeagan said...

I think it's fantastic that you and your husband are not only advocates of DS but also learn everything you can. ALL of your children are blessed to have you both!

Becca said...

I always see those topics listed on the conference agendas, and always know that those are the discussions I will not attend. And that makes me sad, too, that Sammi won't have siblings.
But I'm so glad that those topics are addressed - I never really thought about what kind of an impact having a sibling w/Ds would have on other children.

Jennie said...

Thanks for sharing, Tracy. Those comments definitely hit me emotionally. The impact of Micah on his brothers isn't something I think about every day, but it definitely crosses my mind and makes me both sad and excited for them.

Tommy's mommy said...

Thanks for sharing! Wow, that really hits home. I think as much as we can we will balance our children's activities and interactions to best strike an even keel and to hopefully avoid some feelings of resentment. But in the end, any sibling has mostly (not all) the same feelings about their brothers and sisters. Compassion, care and empathy are also character traits that I hope to see in our children as we continue. Thanks for sharing! And glad you and your hubby got away, very cool!

Anonymous said...

Hi I'm 13 years old and my twin sister has DS. We both help eachother. I help with things like homework and going on stairs and she cheers me up all the time!

Anonymous said...

I grew up with a DS brother. He was a little older than me, but I was always the big sister. He taught me how to love, accept, laugh no matter what and to always, always sing at the top of my lungs. He went to be with the Lord 2 months ago this week at the age of 49. My life is changed forever. I know that having my DS sibling made me the person I am today and I will forever be grateful to God for allowing me to be his sister. Right now I am still expecting to hear his voice say my name and I have made it two whole days in the last two months without crying. I know this will pass, but the blessing of having him in my life will never, ever go away.

Red Rover said...

My little 21 year old sister with DS is also named Molly. She is the cutest, sweetest sibling I could have ever wished to have. Since she was the youngest of five, for the longest time she was the human doll for us all. But now as an adult caring for a parent with cancer, she is the greatest emotional support I could have ever prayed for. While it might not have been as much a necessity for me to return home to care for Mom if there wasn't a younger sister to also care for, she makes life worth fighting for and as her guardian I find myself looking forward to having her as my companion.

Red Rover said...
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