Monday, October 12, 2009

October is Down syndrome Awareness Month!



I thought that since it is Down syndrome Awareness month, I would take time to reflect on my experiences as a mom of a child with Down syndrome.

My story begins a little over 4 years ago when I first learned I was pregnant with my second child. We were very excited to be having a baby and since our other son was already 6, it seemed like it was now or never. Now don't get me wrong, we didn't necessarily plan the pregnancy, but we really don't plan anything in our lives. 12 weeks into my pregnany I began bleeding heavily and I was convinced that I had lost my baby. I hadn't of coure, but throughout my pregnany this continued and I spent many hours either in the doctor's office getting ultrasounds or on the phone with the docs. I even went as far as to rent a fetal heart monitor so that I could make sure that my baby was ok at home. I became obsessed with making sure my baby lived.

Funny enough when I delivered Cameron at 35 weeks, all of my fears disappeared and I was delighted that I had just given birth to a beautiful "perfect" baby.

It's funny now when I think back to the next day. The day after Cameron was born. The day my life fell apart. I won't go into detail of my breakdown. I will however share my initial fears. Fears of putting this burden on my older son, worrying that I would never not have a child in the house, scared of what people would think and most scary to me was the knowledge that I just simply couldn't take care of this baby. Now this is funny to me now only because I have the knowledge now that I didn't have then. So I'm able to look back and think "how foolish".

When your baby is suspected of having Down syndrome, the docs tell you but you just cannot fully believe the diagnosis until the chromosome testing is completed. In our case, this took roughly a week. (I say roughly, like I don't know that it took almost exactly 168 hours for the actual results. ) After a rough week of disbelief and pure depression I decided it was time to take action. For the first time in my 25 years of life, I prayed. And I don't mean, the kind of prayers many people ask for, a new car, a better job, the right man. I actually prayed for strength. Strength to get me through what the doc was going to call and tell me in a short while. Now I don't claim to know what the higher power is, but I do know that there is a higher power. And on that very day, the very day that I gave up the fight of trying to change Cameron, I was given what I had asked for. Strength.

I won't lie and say that we haven't had tough times. Cameron did have a heart defect that required surgery at 6 months old. And it may have been earlier if it hadn't taken him 6 months to get to 10lbs. We have had to fight serious battles with insurance companies and even the almost impossible battle of getting some type of assistance. We have dealt with stupid comments, the "R" word and the strange looks.  But we have gained a lot too. We have gained knowledge, patience, understanding, and a great love that couldn't be any stronger if this child didn't have 47 chromosomes. I can honestly say that not a day goes by that I am not completely amazed at what Cameron has accomplished and what he shows us. Because of him, we have a better appreciation for life, a stronger will to overcome and a belief that he was given to us for a reason. And even in his short time here with us, he has already taught us more than we will ever possibly teach him. He has changed our lives forever, only it's not the change I expected those 24 hours after delivery. It is a much needed change. A change for the better.

1 comment:

Anonymous said...

Thanks for sharing your story. Cameron looks and sounds like a sweetheart. And as this is Down Syndrome Awareness Month, thought I’d pass along an easy way to help raise awareness: check out this short video -- http://www.ahamoment.com/vote/barry -- about the aha moment of father of a child with Down Syndrome who learned what you can do with challenges. If you like his story, click to vote for him, as the top vote getters in the contest will be aha moment TV commercials next year. More media exposure around Down Syndrome awareness would be a very good thing, so spread the word if you can.

Thanks,
jack@ahamoment.com

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