Saturday, November 15, 2008

Trying to find "my place"

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.

7 comments:

Jessica mommy to Alex/ RTS said...

Not alone, we are all standing, there are just miles between us. But not alone......:)

ChelleyD said...

Angie, I too understand your feelings of being alone. I, however, think I joined the "alone" category when I had such a large family. I remember being pregnant with my fourth child and people with three kids would come up to me and say..."don't you know what causes that?" or "your crazy, four kids??" Ironically, during that time the only thing that separated us was one child. Now, not only do I have five, but I had my special girl....most people don't have a clue, they are curious but keep a distance. It is so hard sometimes to be isolated and trying to survive your own life. God gets me through it...I glad we can find support in each other through this blog stuff! Hang in there!!

jennifergrafgroneberg said...

You can come to my place, any time! I don't know about RTS but I would like to learn. My son has Down syndrome, and I recognize so much of what you wrote in this post as familiar to me.

I think there are so many things we share in common, simply by being moms, and loving our kids, and wanting to do our best by them, even when its hard to know what to do.

That's enough common ground for me!

Thanks for reaching out. I know you'll find your place, soon enough.

xo

Cindy said...

Hugs of encouragement! I pray you'll find a home with like-minded moms soon (besides those you know on line). I'm sorry your experience with Down parents was poor...I've had a great experience with several, so I wouldn't give up on it, since theirs is the largest organized group.

Jacqui said...

Ditto for what Jessica said. By the way have you heard of the RTS list serv? Beside us RTS blogging moms this might also be a place that would help you and make you feel like you are not actually going crazy! :) I have found it very helpful.

Nikki~Down syndrome Storyteller said...

I am so sorry you had a bad experience! I am the mother of a Down syndrome child, and if anything, it has made me more compassionate toward anyone with special needs. You can come to my place anytime, too! You and your children are more than welcome in my heart and home.
Nikki, mommy to Madison
http://www.down-syndrome-facts-and-fiction.com

Marissa said...

It is human nature to want to feel a part of a group. We are social beings and we thrive on finding commonality with others. So no, you don't sound like an insecure middle school girl, you sound human.

I am sorry you feel alone and that you have had negative experiences with other groups.

When Marissa was born , she too was given the label of dysmorphic features. Now 20 months later, we still have no primary diagnosis, just "multiple congenital anomalies". This made it very hard to find where we belonged as well.

At the beginning of the summer I finally got in touch with some moms in the Denver area (I'm from Colorado Springs) that had kids with tracheostomies. I have found that I have so much in common with them not only because all our kids have trachs, but the commonality of being in the overall special needs community as well. Some of the kids are preemies, some with congenital muscular dystrophy, and some with syndromes. We have a great time chatting online and getting together. In fact, we just had a Mom's Night Out Saturday!

Maybe you can put your feelers out in your community for other transplant families and try to organize a get together. You might just find you have more in common than you think! Have you ever researched how many families around you might be affected by RTS? I know it is a relatively rare syndrome, but there is a chance. And maybe the list serv that Jacqui mentioned might help.

Whatever you do, I do hope with all my heart that you find somewhere you feel you belong. You always have your special needs blogging friends!

God Bless

Alicia