Life's Journey with Down Syndrome


 
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 An Unexpected Journey

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mom2alex

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Number of posts : 666
Age : 49
Registration date : 2009-01-27

PostSubject: An Unexpected Journey   Tue Jan 27, 2009 2:09 pm

Wow this was written a few years ago when Alex was 13 and in middle school, had to dig it up.

An Unexpected Journey
Nicol



My pregnancy was very normal. I was 23 years old and went through all the normal testing with no abnormal results. At 28 weeks I was undergoing a normal sonogram when the doctor noticed a “bubble” in his stomach. I was asked to get an amnio done and at 30 weeks the results came back confirming the doctor’s suspicions. The “bubble” was duodenal atresia or a blockage in the small intestine many times associated with Down syndrome.

I was of course in total shock. I knew nothing about DS. I was 23 for heaven’s sake. My chances at that age were low. I was not prepared. The doctor sat me down to talk about options. Options? I had carried him for 30 weeks ending the pregnancy was not going to be an option. Adoption. I had to think about that one.

I didn't have time to think...2 days after I received the amnio test results I went into labor. On October 21, 1991 Alexander came into my life, 5lbs and 21 inches long. I knew he would immediately be taken from me to another hospital for the surgery on his stomach. Two hours after his birth he was transported and two days later had the surgery. His surgery was successful. It brought me to tears seeing him hooked up to all the monitors. He had lost weight due to the surgery and they inserted a tube in his stomach for feeding. At that time he was just hovering around 4lbs. Alex spent his first month of life in the hospital.

At this point I was just happy he was healthy. I didn’t see anything “different” about him. He was beautiful and happy. When he came home I was so busy with appointments, clinics, and therapists. I sorted through piles and piles of paperwork and articles and books at times overwhelming. At this time I thought this was perfectly normal. This was my only child and I thought all parents did this all day. The first few years would go on like this; physical therapy, occupational therapy, audiology, Down syndrome clinics, thyroid testing, etc.

At 3 years old Alex went to school for the first time. I remember he was so little he couldn’t get up steps on the school bus. My mother and I both cried as the bus pulled away. All we could see was the top of his head.

I had other friends with children the same age and found it difficult comparing stories when I would get excited if he wobbled and their kids would be walking. Then I decided not to dwell on the what-ifs and to enjoy what he was accomplishing however long it took. Later down the road what is it really going to matter if they walk at 12 months or 24 months.

Alex had a great elementary school experience. For me it was a lot of meetings discussing IEP’s and educating myself on my rights as a parent and Alex’ rights as a child with special needs. We tried many different programs and schools to find the right fit. And in May of 2002 he graduated from elementary school.

Through the years there have been those moments where I would say "why me?" - that’s only normal I suppose. There has been guilt on my part wondering if one day he would be angry with me. Will people accept him? Will he ever marry and raise a family? Will he ever hold a job?

I would learn quickly the people I should surround myself with. In some people I could see fear in their eyes when Alex would play with their children. Like DS was contagious. I realized it was ignorance, but I wasn’t going to waste my focus on educating them. I would rather spend my time with those that weren’t afraid to ask the questions.

Alex has given me a sense of purpose. He has given me a whole new perspective on life. He laughs, he cries, he touches all those around him. His extended family has been accepting from day one. Sometimes in the beginning trying to over compensate but as he grew and they grew to know him they realized he is more similar than different.

He is now in middle school which comes with a whole new set of challenges. It’s still hard for me to believe my little guy is now a teenager. Now at 13 years old Alex still amazes me and my husband each and every day. It hasn’t been an easy journey but I wouldn’t have it any other way. It has been said so many times that God doesn’t give you more than you can handle. I believe that to be true more than ever.

He is the joy of our lives. He lights up a room whenever he enters. He is a typical teen and loves his Playstation 2, playing basketball and to swim. He is just starting with his crushes on the young ladies.

Do I still wonder what his future holds? Sure I do, but I have learned to take things day by day, week by week, year by year. Don’t set your sights too high or aim them too low. And to remember people with Down syndrome are more similar than different.
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Braska'sMom

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Number of posts : 1118
Age : 43
Humor : Lots and lots please!!!
Registration date : 2009-01-26

PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 2:22 pm

He's given you a "sense of purpose." I love that! I value so much the perspective and input of those of you who are ahead of us in this game, having older kids. Thanks for sharing!

_________________

RK, Mommy to Braska (DS) 11/21/06 and Kinlee 02/09/09
Braska's blog: http://braskabear.blogspot.com
RK's blog: http://justrk.blogspot.com
Kinlee's blog:http://kinleecarene.blogspot.com
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ellenstumbo

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Number of posts : 2606
Age : 36
Registration date : 2009-01-27

PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 2:55 pm

Thank you so much for sharing your story. It is so good to have moms share the journey they have taken throughout the years. I am so knew at this, it gives me such encouragement to hear you share!
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SamKat



Number of posts : 2455
Age : 58
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PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 3:00 pm

Well said. Isn't it amazing how fast time flys. Alex is an amazing boy.
Mary Beth
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EAS1971



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Age : 46
Humor : lowbrow, juvenile, scattalogical, slapstick ;)
Registration date : 2009-01-26

PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 3:44 pm

That's a great story, and you tell it so well. Thanks for sharing it with all of us!

_________________
--Beth
Mom to Oliver, 7 (DS, ADHD)
and Sebastian, 6
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rastagalnj

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Number of posts : 134
Age : 54
Humor : slightly wicked, a little dry, totally funny
Registration date : 2009-01-27

PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 3:57 pm

I love hearing you talk about Alex, he seems like a remarkable young man. I hope to one day meet him.
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Emlyn's mom

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PostSubject: Re: An Unexpected Journey   Tue Jan 27, 2009 10:16 pm

I love hearing about Alex too!! Great story and thanks for sharing!
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pookeymom

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Age : 45
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PostSubject: Re: An Unexpected Journey   Sat Feb 07, 2009 12:30 am

That caught my attention, just like RK, that he gave you a sense of purpose, thats how it is for me with my twins now too. Great story, your an inspiration as is your son Smile
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nicksmom

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Number of posts : 321
Age : 52
Registration date : 2009-01-29

PostSubject: Re: An Unexpected Journey   Fri Feb 13, 2009 4:28 pm

Thank you Nicol for being here on this board, since you are ahead of us on the path I always value your input, I love hearing about Alex's life, I loved hearing about the Polar Bear plunge! (brave young men that you have there!)
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