How do you tell people that your baby has Microcephaly when you can’t even bring yourself to say the word? It took me 102 days before I could tell anyone Addie’s diagnosis. I was so driven from the moment of her birth to protect her from the world that the fear of judgment and rejection kept me from telling anyone the name of Addie’s diagnosis.
The little piece of paper that Addie’s diagnosis was written on sat on the dresser in my bedroom. It sat there collecting dust and I couldn’t bring myself to even glance at the word. The stigma of having a special needs child pushed me to avoid saying the name; all I could bring myself to tell people was that Addie “has special needs”.
Although there was no medical reason for me to believe that there would be something out of the ordinary with my unborn child, I felt it in every part of my soul. December 31, 2006 at 6:00 a.m., the deafening silence of the operating room confirmed what my heart already knew. My Sweet Baby Girl would have to fight for every accomplishment in her life and would always be known for her diagnosis.
Within two weeks of Addie’s birth, I had her set up for every available therapy that I could find for her. I spent virtually my entire maternity leave sitting in one practitioner’s office after another.
I buried the person that I used to be and I moved on.
I had a new goal in life and that was to educate anyone and everyone about Addie. I refused to allow anyone to disregard her and I refused to allow her to know anything other than pure love.
We hit the ground running alright.
My husband, Chris:
My son, Julien:
And I:
Have made it our mission to provide Addie with everything in life that she deserves and to give her every opportunity in life that any other child has, just in different ways.
We have settled into our new lives. There are days when I don’t focus on Addie’s disabilities and then there are days when the world feels like it comes crashing down. A friend told me not long after Addie’s birth that, “This life is not a broken dream, it's a different dream.” and so it is. My dreams vary from day to day. Some days I just dream of continued acceptance for Addie and our family and other days, I dream of being Superwoman, just so that I can take care of every worry in our lives.
Like most other parents of special needs children, we were given a very grim prognosis. The first neurologist spoke the words that could have paved the road for Addie’s future, “She will never walk, she will never talk, she will never function as a normal child”. He told us that he didn’t “mean to take away all our hope”, but that he wanted us to understand the facts. Instead of folding under those words, it was immediately decided in my heart that I would prove him wrong. I have spent the last four years doing just that..
The first year was by far the most emotional.
The unknown plagued my every thought. We worried constantly about every aspect of Addie’s life and the life that we were making for her. We made drastic changes to accommodate her potential future needs. We sold our home and moved to a home that would be more accommodating to the needs of a handicapped child. We bought a new SUV to accommodate the vast amount of gear that seemed to follow us wherever we went. We bought every item that could possibly benefit Addie in any way.
I spent countless hours researching and researching some more, looking for the answers that no one could give me. At the end of the first year, I allowed myself to realize that the answers would come only in due time. The only thing we could do was to push Addie to excel, to surpass all odds and to love her more and more each day.
I can’t tell you how many times I look in disbelief at the MRI images of Addie’s brain. I look at the photos and realize that the images before my eyes gives me no more insight to the life we live than the words that resounded through my heart as we were told that our child would “never function as a normal child”. Addie’s brain has several areas of concern, including an unusually small cerebellum, frontal lobe abnormalities and Cortical Dysplasia.
There are moments when all I focus on are the words that we have heard as people tried their best to predict our future. Then there are the moments when all I have to do is look into Addie’s beautiful blue eyes and I see the miracle that God has granted to us.
There is no scientific reason for the cause of Addie’s Microcephaly and we are at peace with that. It wouldn’t really matter if science provided us with an answer, we know that Addie is who she is because of God’s decision for her and HIS plan to place her into our arms. We are eternally grateful for Addie.
I tried to think of one story that would best describe our lives and Addie or that would make the most impact. It never came to me, I am still searching for a way to capture our lives over the last four years. If you are interested in learning more about Addie and our lives, please visit us at The Henderson Family.
(Professional photos courtesy of Kim Sharit at Kim Sharit Photography.)
1 comment:
Thank you for sharing! This was an amazing post!
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