20 August 2013

Blog Hop

This blog hop is a community project of Down syndrome Blogs and the T21 Alliance. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (above

One Truth
My life is so much better than I imagined it would be the day we received our prenatal diagnosis. I was scared and didn't understand what it meant to be carrying a baby inside my body that was affected by Trisomy 21. I'd never known anyone with Down syndrome and because of that I had the misfortune of not being educated on the topic, but also I was blessed to have an open mind... one free of stereotypes or visual images of who or what my child might be when he was born. When it came time for the delivery, we were excited to meet baby Luke and while we've had a lot to learn since he arrived last December, our life has been remarkably normal. When I say normal, I mean the day to day interactions with him are rewarding. I feel satisfied and fulfilled as his mother. I no longer feel cheated out of the typical child I thought I was expecting on that fateful day. When I see the love that his older brother has for him, the warmth that fills my heart is the most wonderful thing I've ever experienced. And that smile. When he smiles (which isn't every moment like the stereotype would indicate), he absolutely lights up. His smile is infectious. His smile is intoxicating. His smile is addicting. I yearn for his smile and find myself doing some pretty goofy things to encourage one. My ultimate truth - my life is good!

One Tip
Find a local support group. It can be a formal group that meets regularly - I was hooked up with one and felt an instant connection with the regulars who attend. Not all of their children have Down syndrome, but they all do have some sort of special need. The information I've gained about specialists and navigating insurance issues has been invaluable. Bigger than that however has been the emotional support I've received - there is nothing quite like having a face to face conversation when you're sharing something very personal and seeing others brought to tears by your story. On the flip side, feeling that way when you hear another's story helps you to feel like you're not alone on this journey. Additionally, I'm a member of a few secret groups on Facebook for mom's of children with Down syndrome born in 2012 and 2013 and that's been a great experience too, in a different way... I am reassured with Luke's progress because I see photos all the time of other babies his age doing the same stuff he's doing. It helps to level the playing field in my mind. I don't have to compare him to normal babies because I can compare him and his development to babies that are on the same course as him. We can talk about feeding issues, heart issues, physical therapies, etc. Things that my friends in real life will most certainly listen to me talk about, but really when it comes down to it, they have a hard time relating because they just haven't been there. Finally, I have been connected with a few other moms of children with Down syndrome whose children also have the same (or in some cases, more complex) heart defect that Luke has and miracuously, although we are all located in Ohio, we all chose Boston Childrens for open heart surgery and we all will have had the same surgeon (once ours is complete, that is) and the peace of mind they've brought me has been really special. One of the moms in particular lives within about 5 miles of my house and while she and I haven't met yet due to our busy schedules, we've actually spoken on the phone probably about a half dozen times. Support is key to learning, dealing and being set up to best help our children!

One Photo 

2 comments:

  1. Love this! Life with Down syndrome hasn't been a big deal for us either!

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