Tuesday, September 13, 2011

If I could do it all over again...

When we first found out Eslea had down syndrome, I just wanted to be left alone. I didn't want to talk to other mothers or meet other babies.
I was scared. I was scared of what I'd see.
I was scared of the future that was laid before me.
When I was finally ready, I met so many new people. Through local contacts, blogging and networking friends, I have met the most extraordinary families. Families that adore each of our children...brothers...sisters..cousins..that carry that extra chromosome.
Amazingly though, there were a few people Jason and I knew before having Eslea that also had a child with down syndrome. These were people we knew in our past and played with as childhood friends. Recently, and even more amazing, another baby has joined our "club" and again, it's someone we knew previously.
What is the point of this you ask?...I'm getting there.
Having a child with designer genes is like being in a club. A very exclusive club with proud members that welcome new members with open arms. Most often when the new members arrive, they are people we have yet to met. Another family joined to us through an extra chromosome.
Yet, occasionally, new members arrive in the form of someone we already know. Maybe someone we have known for years. These new members...the one's already in our lives however small a role, these are the ones we so strongly want to reach out to.
But we know the early weeks are the hardest. Remember those days? Those weeks?
Doubt. Anxiety. Fear. Ignorance. All overtaking us.
What do you say?  If you could talk to your past self at those moments...what words would you chose?

I would do it differently. I would get plugged in sooner and meet another child with DS as soon as possible.
I would battle the IGNORANCE head on. I would see for myself the truth and capabilities.

I hope to offer that to others. Of course, Eslea would be my IGNORANCE fighter. If those parents could just meet her. Hold her. Listen to her laugh. Watch her try to crawl for toys. Smell her. Play games with her.
Views would change. Ignorance, doubt, fear, anxiety..they diminish around that baby.
I swear she has magic powers.

In the beginning, I was so scared of how "different" she would be, that now I am amazed by exactly how "typical" she really is. She is typical. She is different. She sports designer genes. She is perfect.

Please do let me know the wisdom you would share with your former self from those early days. It's important. I have new parents to meet and I want to do right by you all.

Don't forget to read the post about Pharmacology because I want your input. Also, I still need guest bloggers for the new site. For those that have already responded, thank you. Look for an email from me soon!



  1. love the ignorance fighter...that ROCKS!! I think I would also plug in sooner...and I know i would stay away from professionals and stick with families like ours to get what I need to to know about whats to come with Maddie and her development...smiles

  2. When mine and Brads best friends had a baby a few months ago with Ds I felt I was in the strangest position...Like you said, I remembered how I felt in those first days...I wanted to be left alone, nothing no one said comforted me and I definatly didn't want to meet other Moms..I just wasn't ready. As we drove to the Hospital to see them I kept asking myself what would I have liked people to have said to me. The truth is it never mattered what anyone said, I was to broken back then to have heard anything...The one thing I did know was important to say was "congratulations" I knew the baby needed to be celebrated and not mourned. I have always felt guilty about how much I grieved those first few days. Just follow your heart and you will say the right things...Afterall you have been there and no one knows the feelings they are having better than yourself.
    And I have to say I totally agree with Kim...Best advice is to NOT google Down syndrome...It will bring you nothing but fear and heartache...They need to hear real life experiences from parents raising kids with Ds.