Friday, August 5, 2011

My Story

This week marks the one year anniversary of my 40th birthday (wink, wink). I feel GREAT, more like my old self and less like the stranger that possessed my body and mind for the last decade. What happened you ask? It’s a long story, but I’ll try to give you the brief version starting with my 30th birthday.

That was the day I had an amniocentesis done after just finding out that “there is something wrong with the baby.” Then there was Peter’s complicated, traumatic, and two-month early birth that had me scared out of my wits. That was followed by his over three-month stay in NICU, which really was a cake walk compared to taking care of him at home his first year. There was also the constant fight with our state Medicaid as well as the management of Peter’s numerous clinic appointments and piles of paperwork. It was a very lonely time for me even though we had a constant stream of strangers (therapists, nurses, and social workers) in and out of our house. In the midst of surviving Peter’s first year, I was dealt another blow by the sudden and tragic death of my brother. I also had two very early miscarriages during that time—one at his funeral.

How can all this be happening to me I thought? How much can a person take? What ensued was a very long bout of guilt, grief, and depression. I rarely left the house, was in a constant state of fear with the responsibility of Peter’s care, and sometimes never even showered or dressed for the day. It’s really something that I can’t even describe.

I did gradually claw out of the darkness. I had to for Peter’s sake. We had big decisions to make about surgeries and specialists. Those 2-3 years flew by in a blur of accomplishing what had to be done for Peter. Then, just as I was thinking life was calming down a little, SURPRISE again! I was pregnant. At the earliest opportunity, I had a high-level ultrasound. Once that came back normal, I did get excited about welcoming another baby. Also, Peter had his trach removed about a week before Jacob was born. We had a MAJOR celebration over that milestone!!! Things were definitely looking up.

Jacob’s birth, when I was 34, was a great joy. For me, it was very healing compared to the trauma of Peter’s arrival. I (stupidly) thought taking care of this baby would be easy compared to what we went through with Peter. Boy was I wrong! It turns out that all babies are exhausting—even the so called “normal” ones. Who knew?! Jacob never slept more than a few hours at a time and was very colicky. Poor Peter endured countless hours of hearing his new brother scream his head off and take all the attention away from him.

I do recall good times and laughs during all those years, but they were definitely overshadowed with a lot of responsibility. I still remember the words of the geneticist who diagnosed Peter. He said, “This is not doom and gloom. But, this is a very rough road.” Life is challenging and messy. We aren’t given the luxury to choose our trials, but we do have the choice to grow and learn from those events.

I’ve never shared my full story, but I’m hoping that it gives support to other Mom’s like me. Nobody would ever choose to have their child go through as much pain as ours do. It is not your fault. Let me repeat that again, IT IS NOT YOUR FAULT that this happened. You will survive the many challenges of motherhood, and, eventually, you will emerge a wiser and more compassionate person. I hate to tempt fate too much, but I say bring it on world! I think us “special” Moms can handle just about anything—wrinkles and all.


  1. Dede - Thank you so much for sharing your story. We may each have our own experiences, but it's always refreshing to know that we aren't alone in how we may feel along the way. The connections I have made with other families - in the early times and even ones I continue to make - have been such a positive thing for me in the process of coming to terms with and eventually accepting this unique journey. :)

  2. oh, first of all I would like to thank you for sharing your personal story, and ofcourse I feel for you, and surely I hope good things are waiting for you sooner. Your blog reminded me of a website called where readers actually shared their own stories to be viewable by others.


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