Sunday, January 24, 2016

The beginning

I've been thinking about starting this blog for a long time now. In fact, I wrote most of the text below about a year ago! Fear has been getting in my way of actually publishing it. I just now tweaked it a bit---mostly to reflect the fact that my son is now almost 2.5 years old. Thanks for visiting my blog, and I hope you enjoy reading it!

I feel really scared to start this blog, to put myself out there, to put my son out there, for anyone to see.

Where does this fear come from? Am I afraid of the potentially mean comments that could appear down below? And that those comments might affirm the negative thoughts that sometimes creep into my mind? I’m not doing enough for my son. I don’t quite know what I’m doing, or where I’m going. I worry too much.


Am I afraid that people I know will read it and silently judge my choices---my choices to put the brakes on my career and stay home with my son, to move the family to the Netherlands last spring for my husband’s career, to isolate my son during his first few years of life? (And by “my choice,” here, I really mean “our choice”-- mine and my husband’s.)


Am I afraid that my son will someday, as a teenager perhaps, be mortified and angry that I chose to share details about his life, about his struggles, on the internet?


But will it be worth it?

I think so.

Mean comments and silent judgments shouldn’t matter. (I say “shouldn’t” instead of “don’t” because my skin is a little thin; something, among many things, to work on!) 

And as for my son, I’m hoping that he’ll someday see this blog as I do, as a place for me to connect with other parents of special-needs kids and to hopefully help them in some way by sharing our story.

Our story began almost 2.5 years ago, when I was diagnosed with a rare pregnancy complication called HELLP syndrome and had to deliver my son via emergency c-section, 12 weeks and 1 day early. He weighed just 1 lb. 12 oz. (As if giving birth to a medically fragile infant wasn’t stressful enough, it happened while my husband and I, both Americans living in the U.S. at the time, were visiting Germany for my husband’s work. Eek!)

Soon after birth, my son developed a brain injury called an intraventricular hemorrhage, which is common in preemies born very early and very small and led to hydrocephalus and hemiplegic cerebral palsy affecting his left side. He has endured numerous medical tests and procedures, including 6 surgeries and 1 heart catheterization procedure, and has had many, many therapy and doctor appointments. In fact, he’s listened to so many doctors talk about so many different medical specialties that he's just about ready to become a doctor himself....

photo taken in January 2015

(Proficiency in Curious George is necessary for completing medical training, right?)

He's now 2.5 years old and learning to walk, increase usage of his left hand, and communicate more effectively, all with the help of physical, occupational, and speech therapy.

I'd like to use this blog to share with you some of my son's struggles and triumphs and some of the things I've learned during our medical and developmental journey. Enjoy!

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