It's a difficult journey to the land of special needs. There are many potholes and detours along the way. At times the fog is blinding, and other times it is a sweet respite from the everyday challenges. The fog allows you to pretend that life is just peachy...yep, nothing is out of the ordinary in THIS house. However, the fog always clears, and you are left wondering, "Now where in the heck was I headed again?".
At the beginning of this journey it was as if we were thrown head first down an enormous water slide with the water blowing full blast directly in our faces. My pregnancy was fairly uneventful. I suffered pre-eclampsia in the last month and gained WAY too much weight (72 pounds to be exact), but the rest was a breeze. I had to have a c-section due to my high blood pressure. We were admitted to the hospital the night before I would have surgery. The night we were admitted just happened to be our 3 year anniversary. We were so excited to extend our family.
Immediately after Emma was born we noticed all of her long black hair. As people filtered in to meet our precious bundle of joy many commented on "her beautiful olive skin tone". The doctors were commenting on her large thumbs and toes, but we wrote that off as being similar to her daddy's.
That is when it started. Everything about my child that I saw as beautiful began to get examined, photographed, and critiqued. I loved her hair, her sweet eyes that turned down just a bit on the corners, her beautiful little mouth. All of them were described to us as "dismorphic features". Add to that the extreme liver disease that she had that began to turn our precious girl into the color of a banana, and you could see one scared, angry, sad, confused mama who was searching for a new normal....a new group of people who just might understand...just might be able to say to me, "I've been through it too".
I found that exact group when I found an on-line liver support group. I still religiously visit that group. It has been my lifesaver in the liver disease department. For a long time I could hide my head partially in the fog and pretend that liver disease was all that was "wrong" with Em...THAT was the reason for her delays, right? She had 7 surgeries in the first 7 months of life including a liver transplant...she's obviously going to be delayed, right? However, the delays became more and more apparent.
We were told when we first saw the geneticist (the one and only time...story for another day) that Emma possibly had RTS, and it was similar to Downs Syndrome. So, when the delays became more apparent, I came to the realization that RTS was a part of our Emma. I came to accept that, but I so badly wanted to find a place where I "fit in" ...a group of parents that could tell me that they "had been there". I could find very little information about RTS, so I began to follow a few blogs of children with Down's Syndrome. I posted a two comments on two different blogs, telling them about my Emma. BOTH of them e-mailed me back and reprimanded me for comparing RTS and Down's Syndrome....another door slammed in my face...another place where I didn't belong.
Do I have my special place today? I have found more people that I can relate too, but I so badly want and need to find a place where I belong. Does that make me sound like a middle school girl who is insecure? I think that it might? But, it is truly the way that I feel.
Everyone's journey is different, but when you have a journey with a child with special needs it becomes particularly different. Every aspect of my life has changed. I am a better person for it, but a little piece of me just misses that commonality that I used to have with all of my friends. I am no longer one of the pack...I now stand alone...and alone is a very sad place sometimes.