Friday, October 26, 2012

If you just found out your baby has Down syndrome...

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Since I have noticed people coming to this blog looking for answers to questions about Down syndrome, 
I thought I would write some things that could be helpful during this stressful time. 
I know this won't apply for the majority of the readers of my blog, 
but maybe someone out there could feel a little better after reading this some day...

I'm not claiming to know everything about Down syndrome, and I know that not every situation is the same, 
but there are a few things I wish we would have known on that day we learned that the baby we were expecting had Down syndrome. 

Our daughter - six months 

So if I could go back to the days right after our unborn baby girl was diagnosed with Down syndrome, 
and tell myself a few things, it would be this:

Don't feel quilty that you're sad!
Whether you received the diagnosis before or after the birth of your baby, it is only natural to be sad. You had certain dreams and expectations, and you are worried that you have to adjust your expectations. You may feel like you suffered a loss; like you're mourning the loss of the baby you thought or hoped you would have. Mourning takes time, but it will get better!!!

Be careful where you get your information
Don't do random searches online to educate yourself! Don't get books from the library that are more than 5 years old. Things don't stay the same, and there is a lot of outdated information.
Therapies are continually improving, and Early Intervention programs can help your child to reach their fullest potential. In the last 30 (!) years, the life expectancy for individuals with Down syndrome has gone up from 25 to 60!
If you want to start your online search somewhere, is objective and useful.

Find local resources
There is a lot of help available for families with children with Down syndrome.
On this page you can find a lot of North American Down syndrome organizations, while this page has links to organizations worldwide.

Talk to other families with children with Down syndrome
The most important moment for me during my pregnancy that changed my outlook on the diagnosis of our baby girl, was the moment that someone let me hold a newborn with Down syndrome. That was SO comforting, realizing I was just holding a baby, and realizing it was not as different as I had thought.
Also, watching other families interact with their little ones with Ds, showed me that they were all 'normal' families, enjoying life like anyone else. When we went to our first playgroup for toddlers with Down syndrome I expected a bunch of sad people. Nothing could be further from the truth. Also, it was really good for us to get to know people to whom we could ask practical questions. Everyone has been extremely helpful so far!

You're having a baby, not a diagnosis
Don't forget that you're having a baby. Just like any other baby, he or she will need food, diapers, and most of all, love. Try to think of your baby as a baby, and not as a diagnosis.
And, although your baby will most likely have some features that are common to kids with Down syndrome, like the almond shaped eyes, he or she also has your genes, and may show family resemblance.

8 months old

Quite a few people who have someone with Down syndrome in their family go on to adopt a child with Down syndrome
Did you know that there are a lot of people that adopt children with Down syndrome? In fact: there are even waiting lists for such adoptions. And even more important: there are quite a few families who already have a child with Down syndrome, and decide to adopt a child with Down syndrome. If it is really hard to have a child with Down syndrome, why would you adopt another child with Down syndrome?
I personally ADORE the following blog: Confessions of the chromosomally enhanced 
The writer of the blog is a mom of two little girls. Her older sister has Down syndrome. She and her husband decided to adopt a little girl with Down syndrome. Simply the fact that someone with first hand experience with Down syndrome CHOOSES to have a child with Down syndrome herself, is SO encouraging. 

Our life stayed 'normal' -whatever that is
I thought that our lives would change forever. And not in a good way. Well, guess what? Our life is still quite similar to what it used to be. There are no things we haven't done because our child has Down syndrome. Sure, we didn't do things with her that we wouldn't do with any other newborn, but other than that? 
The biggest change is a good one! We have our third daughter, who we adore, just like her big sisters. We have met some great people during this journey. Granted, she does have therapy and some extra doctors visits, but she is SO worth it :)

11 months old

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1 comment:

The Sumulong 3 said...

This post is SO right on the money! I hope someone who gets a prenatal diagnosis will read this post and say, I can do it and it will be worth it.