Guest Post: Life With A Magical Chromosome

Today I want you to welcome a guest blogger, Jennifer Storm.  Jennifer has an adorable baby girl named Alivia, she's a Kindergarten teacher, a wife, a friend, and she also has an older brother that has Down Syndrome.  His name is Brandon.  We live in a very small community so Jade & I grew up familiar with Brandon & he is the reason that Jade & I had a great outlook about Down Syndrome, and why we know Ollie will be capable of anything she sets her mind to.

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Brandon, my older brother, has that "designer" gene that Annie often talks about. I don't have any other siblings so growing up with him is all that I know.  I don't know what it is like to have a sibling that you confide in and go to for all your problems, but he is something much more than that to me!  He is now 30 years old and I am 27. 

I don't really remember exactly when I realized that he was "different" and had Down Syndrome, but I do remember being EXTREMELY protective of him at an early age.  I remember thinking a lot that people were picking on him or making fun of him.  Something else that I look back on is that I treated him more like he was my younger sibling.  When he would talk, I knew what he was saying and I didn't like to see him or the person he was talking to get frustrated so I would immediately interpret.  I would give dirty looks to anyone that seemed to be giving him a funny look!  I remember being in school with him and really watching other students and making sure they were being kind. 

Celebrating his 30th birthday

Not to go off on a whole different story, but he was attending a school in Mattoon called Armstrong. My mom fought (and won) to get him into the public school district.  This was the BEST thing she could have ever done for him.  He was going over to Mattoon and learning life skills that she was already teaching him at home.  She wanted him exposed to people in our community and school.  She wanted him to have social skills.  She wasn't concerned about academics as much.  Getting into the public schools provided all of this for Brandon.  He attended Homecomings and Proms.  He made all kinds of life long friends.  His High School teacher helped to get him on the high school football team.  He went to every practice and game.  Many times if the team was really winning or really losing, he would get put in at the end of the game.  He was in Heaven!  The other teams would be informed of his disability and would take extra caution with him.  To this day...10 years after his graduation, he can be seen at all of the Shelbyville Rams home games out on the field helping the football team.  This year he was even the Grand Marshal of the Homecoming Parade....talk about EXCITED! . His high school teacher also got him a job at McDonalds as the Lobby Host.  Again...10 years later, he can still be seen there greeting customers with a smile! 

I can't say that everything was perfect for him.  He so badly wanted to get a black car to drive when he turned 16.  He so badly wanted a girlfriend like all the other High School boys had.  To this day he still wants a girlfriend and to get married.  He now lives in a group home apartment.  He cooks his meals and cleans his apartment (under the supervision of staff).  He likes going to church, out to eat with family, spending Saturdays with his Grandpa and one of his newest loves, his niece, Alivia!

I have to say that Brandon has lived a pretty fantastic life! We have been blessed with his good health.  He has not had any major medical issues.  I often times find myself worrying about the life expectancy of those with Down Syndrome.

What I have learned from Brandon:

Brandon has the innocence of a child and things that stress us out, don't bother him.  Sometimes I look at him and think, I wish we could all be a little more like him.  The littlest things in life can excite this boy and that makes our life more exciting.  Christmas has never been boring at our house...because YES...at the age of 30 he still believes in Santa.  I wouldn't want it any other way!

Brandon's Relationship with Alivia:

When my husband and I found out we were expecting, I couldn't wait to tell my brother.  I knew that he would be absolutely thrilled.  He would love being an uncle and what a good one he would be. Sadly, our pregnancy ended in a miscarriage.  Once again, I immediately thought of my brother.  What were we going to tell him and how would he understand.  I was a mess and I couldn't bring myself to tell him.  My mom told him and then they came over to my house.  He put his hand on my shoulder and said, Jenni, I am sorry.  He had a tear in his eye...I lost it.  A few months later, we got pregnant again.  Once again, he was thrilled.  He would call me all the time and ask me how I was, if I was putting my feet up, etc!  He asked me if he could babysit on September 24 (my due date!)  When our precious little girl arrived, he didn't come the first day to see her (he is too dedicated to the football team and had to be there for their game) so he came up the following day.  He did fall in love with her and him holding her was one of the sweetest things I have ever seen!

What would I tell others that are worried about having a child with Down Syndrome or having one child with Down Syndrome and worrying about having a 2nd?

I feel that our family has been blessed with Brandon. I could not imagine our life without him.  That is why when I was offered the test for Down Syndrome, I refused.  I didn't want to know because there was absolutely nothing I would have done different if I did know that my baby was going to have Down Syndrome.  I have been asked before if my chances are higher for having a baby with Down Syndrome because of Brandon and if I am concerned about it.  Absolutely not!  My heart melts anytime I see a baby or even a grown person with Down Syndrome.  They always have a smile on their face and are absolutely the most precious people.  I can't ever think of a time where, as a sibling, I have ever felt that my life was impacted by having a brother with Down Syndrome.  I feel the only way it was impacted was in a positive way.  I feel like I am a stronger, more independent person because of him.  I feel like I do take the time to enjoy the small things in life with him.  I feel like I have a stronger sense of caring for anyone with a disability.

Brandon is one of my biggest blessings in life. I know that many people can't imagine having a sibling or child with Down Syndrome....I can't imagine what they are missing out on.  It's something that is indescribable and no matter how much I type I can't even begin to explain!

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Thank you so much Jenni for filling in for me today - I know your words have deeply touched my heart, and I know there are many other families that will read your words and have tears in their eyes because they know the beauty and joy in that extra special chromosome as well!