Once a year the 5 p minus society (the support group for families with cri du chat) has a conference.
The first conference that I went to, I have to admit...I was not ready for. I was not ready to see children with Hailey's diagnosis who were older. I was not ready to see the children who were ten and still not speaking, some not walking. I was not ready to see or meet the 20 year olds who were still not speaking, some not walking. I just wasn't ready. I cried through the entire weekend. It was in Utah and we flew from California. Hailey was just a baby, not even a year yet. She didn't sleep back then and cried the whole weekend because she wanted her bed...or maybe she cried the whole weekend because I was crying the whole weekend...I'm still not sure.
The point is...I WAS NOT READY. So I really got nothing out of it. I wasn't ready to embrace the new life that was facing me. I wasn't ready to deal with the emotions that went into it. Hailey still just looked like a beautiful porcelain doll. She was too little for anyone to realize that she had a disorder at all. So I wasn't ready to meet the people who would know just by listening to her cry. I feel ashamed about that sometimes. That I didn't give anyone the chance to support me there. I didn't open up during that weekend to anyone who might have been able to help me. But I just wasn't ready.
In 2008, we tried it again. We travelled to Virginia with all three of the children. Zach was 12, Hailey was 7 and Aubrey was a year. It was wonderful. We had an amazing time. We met amazing people. We loved it. We swore we'd go every year.
And then the financial crisis and events of 2008 happened. We lost our home and our savings and our business. And the conference was a pipe dream.
The 2011 conference is coming up in 2 weeks and we are missing it. It is still just too expensive and just out of our reach to afford to travel with our family that far.
And I am bummed. I have met so many wonderful friends through facebook and all of the blogs that the other families have written. I finally feel connected to other families who are facing the same things as we are...and I want to meet them in person.
So my goal over the next year is to come up with a solid plan on how to get my family to that conference! A place where people don't stare and we are just accepted as we are. Where Zach doesn't have to explain or defend his sister and Aubrey doesn't have to tell teenagers to stop staring at her sister. Where Tim and I can meet other moms and dads who share our feelings and fears and struggles.
Next year...I can wait right?
I know how you felt, but I unfortunately have not made a conference due to not being ready to face reality...and my son is 5...I hope that doesn't make me a bad person that I still want to be in a fantasy world.
ReplyDeleteWe found out about our daughter's CDC last year and would have gone to the conference this year but a conflict in our schedule came up. I am sooo happy that I found people's blogs BEFORE I went otherwise I would have been pretty shocked. I probably still will be shocked, but better prepared. Maybe we will see you next year in Colorado! (it's in colorado, right? i think i remember reading that).
ReplyDeleteBarbra ~ That definitely doesn't make you a bad person. I slip back there every now and again even now & Hailey is ten. We all come to accept it in different ways and in our own time.
ReplyDeleteCrazy Incognito ~ yes it is in Colorado! We are hoping that we will be able to drive there (so much less expensive than having to fly!) We are just working on mapping out a budget for it this weekend. The plan is to be there next year & we are crossing our fingers that we won't have anything to stop us!
Ohh I could only imagine what emotions were present the first time. I mean how ready can you fully be? I would have a hard time too I would think. Especially because I feel like the doctors have nothing to say about what the future held for my sister and Lily. I am so glad to hear that the second one was much better! And this economy is horrible, it makes me soooooo sad, and I am sad to hear you were deeply effected by it. And I am sorry you are not able to attend because of the economy! UGH I wish it would just disappear! I hope you are able to make in next year!!
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