Saturday, February 5, 2011

New friends

Hi all.

I made some New friends in December. The are currently dealing with Rett Syndrome at it's worst.

To say that my heart aches for does. It makes me remember why I stopped reaching out to new families. It's not that I didn't care there for a while. It's that I care too much.

When I unsubscribed from Rettnet it was after reading an open letter from a father. He was pleading with the members(who had just went through the merger of 2 Rett Syndrome charities to stop fighting.) It was ugly. Rettnet had gone from this place where people could go for online support. For that advice no one else has...Most of us are told when our daughters are diagnosed to get online and find other families.

He was furious with the taunting,the hostility and talked of meeting a new father that weekend. His words had me in a ball on the floor. I rarely posted but I read everything. I too had wondered what had happened and why. I agreed with his words that no new family should come there in the state it was in. He talked about standing on a golf course listening to a new father describe his families journey and the pain they were in. I knew nothing of them but I still cried. I cried at the pain I knew they were feeling and the pain we all relive every time we meet a new family. I decided right then and there that I was just going to stop caring. Focus on my own child..this hurts too much Id tell myself. I didn't reach out to a new family after that. Even if they contacted me. I would kindly answer their questions but I did not want to be any ones shoulder to cry on anymore. It was killing me. I kept in contact with the Rett family and friends I already had but newbies...nope not me thank you.

Over the summer I got more involved in the Rett Syndrome world. Running a website and talking to people. In late summer Rett syndrome started kicking Abby's butt again. Crazy GI issues, tremors,panic attacks and severe gut pain. Long story short we ended up going to New York to the best Rett doc ever....Don't get offended Rett docs. Ive only met 2 but I think she's pretty awesome.

Our trip there is what led me to this family. I had heard of them. I had read their blog a time or two. We had even commented and common friends posts of FB. This family took us in during our trip to save us costs and to have a friendly face in a scary place.

That first night I knew I had made lifelong friends. I don't connect easily. I have a back off kind of attitude and my sense of humor is rude and tasteless. I purposefully keep everyone at arms length. Always have. Even before Rett hit. That's just me. I'm not a hugger or a snuggler. To the delight of many people I know...I'm a favorite target for an ambush group hug...yuk

The second night I was there..after all the appointments you would have thought I came back to home. Dinner waiting. Helped me unwind from the day and gave my daughter a bath for me. Sat up late talking. Stories, how to's, tears and laughter.

I don't know that there has been two days in a row since we haven't talked or emailed since. I had the great honor of being in the audience when this same family went to THE VIEW and spread awareness to the world. I carried their daughter off stage when she got fussy and sang to her in the hall while they completed the interview.

Their daughter is in the throws of regression. It is very hard for everyone. Those of us that have been there ache for this family. I laid awake with the parents all night long while she tossed and turned and screamed and whimpered. I took turns trying to calm her the next day as she tried to crawl out of her own skin and pleaded with those beautiful eyes. Man do I remember the screaming and the pleading. I can remember being so frustrated and angry and hurt that I wanted to die.

This family got their diagnosis like some do before the bad regression hits. This girl was a preemie so they did extra checks. As soon as she accomplished something it was gone and they knew something was up long before I did with Abby. They say that they were just gonna check. They knew there was an issue. The doctors decided to start with the worst of the worst and work their way down. They soon found out their baby had Rett Syndrome......

to be continued....


Kelly said...

I know. Regression stinks (to put i mildly) I remeber thinking that I could not do "this" i remeber thinking that "this" is what Rett is like and that my life was like this now until one of us died. Being in NY brought be back to that "place" I tried to encourage then that even though Rett still stinks and I wish it was not a part of Brooklyns life - now that regression is over we are at a much different - more happier place. Don't get me wrong - I still HATE rett syndrome but NO WAY is our life like it was during regression. Does that make sense?

The MacDonald Family said...

I ache and cry for this family as well. I think about regression and wonder how we ever made it out. I remember the screaming too, it still haunts me. I agree with you Terri, sometimes it's hard to greet the newbies with open arms because its almost like you live it again, but I also know that when I was a newbie parent in the pains of regression it was amazingly comforting to hear that someone else was out there that felt the same way. You're an amazing lady with such a beautiful heart. So many of us thank you for that! Hugs to you and all the new families.