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.


The Hapa Girl said...

That was very clear! I would probably have you say those things to my old self!

Monica said...

I would tell myself not to worry so much in the beginning. It's OK to cry, cuz things didn't go as you planned, but just love him as you would any baby and you'll be amazed at all the things he *can* do. He will continue to amaze you and you will fall madly in love with him and wish more people could experience the joy you feel in raising a child with Ds. It's going to be more than OK...

Susanna said...

Great post, Missy!

lovemy3 said...

We are still in the beginning stages of everything. We found out at birth. Hailey is now 2 1/2 months old. Thanks for all the comments. They truly help me put things in perspective.

Jenn said...

I think you have said it all--all the dreams you have for your child that seem to die the moment you are told they have DS. It throws your whole life into a lurch. But an amazing thing happens as your child grows older and begins to show you who they really are. You realize just how wrong you had it and are amazed by the blessing this sweet life brings. I still struggle with fears that Jack will never find love and companionship but he has coaxed me out of the corner with his funny character, smart personality and boundless love.

Anna said...

I would tell myself that he was not going to die and neither was I I would tell myself to not worry about everyone else and to just concentrate on my baby and my immediate family. and last but not least heis going to be fine treat him the same as your other kiddos he is going to teach you more than you could ever teach him He is an amazing child just love him!