Friday, April 22, 2011

Diagnosis Day: What Would You Say to Your Past Self?

There is a very thought provoking post over at Down Syndrome Pregnancy Today!  The post asks the question "Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?"

Please take a moment to post your answer on the thread - the deep well of information at Down Syndrome Pregnancy is so helpful to mom's who find out they are having children with Down syndrome - not just today but for year's to come!

Here is what I would tell me:

I’d have to have a good talking to myself to set things straight!!

You worry she will be a burden.
You are wrong - she is going to be funny, silly, and a joy.

You think this will be difficult for the other two kids.
You are wrong - they will be better, more compassionate people because of her. She will be their sister – they will fight and make-up just like the other girls. She also unify them – they both have a favorite sister, and she is their favorite.

You think you might not be able to handle this, that mom's of kids with Down syndrome are 'special' themselves somehow in a way you aren't.
You are wrong - you have what you need, and those moms aren't super moms either.

You think you might have to quit your job and totally change your life.
You are wrong – your life will be pretty much the same – busier, and harder that first year, but you’ll adjust just fine to your new normal.

You think maybe it would be better if you miscarried her - then you think you are a terrible mother for thinking that.
You are wrong. That would not be better. And you aren’t a terrible mother, just ignorant and really, really, really afraid. Forgive yourself and move on..

You think you are all alone.
You are wrong – you will have more friends and more Down syndrome family than you ever imagined. And they will be amazing!

You think having a child with intellectually disability will be terribly hard for you to adjust to, and that seeing her struggle will make you sad.
You are wrong – you will learn that the value and worth a child is much richer and deeper than that, and that that sometimes what is being measured isn’t the most important thing. She will inspire you with her strength.

You think that she will never enjoy a book or basic literacy, and you feel sorry for her.
You are wrong. She will know her letters, colors and shapes when she is three. Then you will know she will read someday.

You think she will never be able to communicate with you.
You are wrong – she will learn sign language, with your assistance and she will learn to talk.

You think you will never stop crying.
You are wrong – every tear you shed will be rewarded with 30 laughs that she inspires – on purpose - within the first 2 years.

You think having a child with Down syndrome will ruin your marriage.
You are wrong – you married him for a reason – he will not miss a step in loving her, and he will never see any meaningful differences in her.

You think being the 1 in the 1 in 16 odds would be the unlucky thing to happen.
You are wrong - you are lucky.

Saturday, April 2, 2011

New Dreams...

So when I first had Violette and found out about her extra 21st chromosome, I stopped having any dreams for a while - it was weird. I realized that that probably wasn't healthy, not thinking about the future and having a vision for it. After my initial shock, I started finding new things to dream about and think about.

As many of you have probably guessed, I'm not one who spends much time worrying about the future for Miss Vi - I believe that she may have a much more fantastic life than I have had. I know sometimes there is worry about "are we being realistic?" in our expectations. I wrote this in March 2009, and I still think it is realistic..

  •  I imagine that she will travel the world with Special Olympics (and take me places with her that I have only dreamed of.)
  • I dream that she will live every day of her life as if it is the "best day in the best life ever," which is a phrase I've heard many adults with Down syndrome say.
  • I dream that she will go to camp - I was never allowed to!  
  • I dream that she will be a public speaker - I love doing it, and I'd love to see her have a number of experiences doing that.  
  • I dream that she will be fluent in a second language. I never could learn - I'm giving her skills to be a good signer and I know other kids with DS go to secondary school and major in signing and deaf studies.  
  • I dream that through her life long advocacy for people with Down syndrome, something she started when she was 3 months old with an article that ran in our local people she will have helped change how the world perceives people with Down syndrome and other developmental and physical disabilities.  
  • I dream that she will be confident that she is ok as who and what she is, and that she will live in a world that values the inner person and inner beauty more than outer beauty.

What dreams do you have for your child with Down syndrome?