Saturday, January 8, 2011

Long time, no post

This blog post has been a long time coming, I think I was scared to write it down because that makes it more real to me. A few weeks ago or last month I guess it was I did something I shouldn't have and wish with everything I have that I could take it back. I did what the genetic counselor said I shouldn't do. I googled Joshua's diagnosis. It scared me, really badly. I also found a site for moms with boys with his diagnosis, that made it worse. I felt a little better after talking to the genetic counselor who told me that Joshua was the 1st to be diagnosed with a very small duplication, the smallest ever reported and just on the one specific part of the gene/chromosome (not sure which one).

I haven't been the same since this happened though. I'm terrified for his future. Before this I just lived day to day doing the best I could, now I'm just going through the motions trying to get through the day. In the beginning, a few weeks ago, I was crying a lot. Now I'm not sure if I'm numb or what, I do still think about it, obsess over and need to stop.

I was upset when we found out Joshua was a boy, I wanted a girl. I got over that though, for the most part. Then we found out Joshua was delayed and now this. What's next? I'm trying to move forward but not really sure how. I really only wanted one child, a girl. I can't help but think about what he's not going to be and that I may not have grandchildren one day. I'm scared to find out if I am a carrier for what he has, that would make me feel worse. I'm not sure I/we could handle having another baby anyway. I feel like seeing a typical baby achieve milestones would hurt. My heart hurts for Joshua but he's happy and doesn't know but I do and that's what hurts.

I've thinking about this post, I know I haven't updated in a long time so I thought it was time but I wasn't ready, still not sure I am now. I wonder how long I'll feel this way, I know lots of kids his age that are doing more than he is and it hurts. I still wonder why me, why him? I don't believe that special people get special kids and I don't feel blessed right now, maybe one day I will. So that's basically where I'm at right now, just getting through the day in one piece.

Oh we are most of the way to getting Joshua his iPad! We have gotten more donations and we're at $400 right now! I want to get the 32GB model with an extended warranty & case so we're looking at $750 so we're more than halfway there. I know we'll be putting in our own money so we won't be waiting much longer. I figure we'll wait until he gets to try it first and then we'll decide if we're getting it now or waiting. It will be February or March when we get to try it for 2 weeks.

1 comment:

ParkerMama said...


I hope it's okay if I take a minute and reach out to you. First, I want to tell you how beautiful your little guy is.

Joshua just reached out and stole my heart.

Coming to terms with a diagnosis is hard. I remember when they first told me of Parker's pulmonary hypertension. So I do, in a way, understand your fear.

Allow yourself the time you need. Everyone goes through this process in their own way.

If you'd like, here are a few more sites of parents who 'get it':

And we are opening a new special needs forum on the new Mom it forward forums.

Tammy and Parker