Take a visit to New Kind of Normal

Sometimes I read posts that other RTS parents write and it just hits home with me. I often find that with my friend Jessica. Hop on over to her post from today:

http://newkindofnormal.blogspot.com/2009/12/silent-night.html

http://newkindofnormal.blogspot.com/2009/12/bumprepost.html

There are people that could really use you this Christmas.

Sweet Santa

My beauties both loved Santa. This is the best Santa ever...he is the real thing :)

Joining Will

A couple of weeks ago Nathan's RTS brother Will had an amazing weight gain of 3 lbs in a month. Will's weight gain was because of his awesome new skill of eating solid food by mouth! Way to go Will! Well, Nathan's nurse was just out for a growth check and Nathan has gained a pound and a half, grown 1/2 inch in length, and .5 cm in head circumference in just a month. This is incredible! So Will, keep eating and growing, Nathan wants to be just like you!

Now for typical kids, it is expected that our kids to grow at that rate Nathan grew this month, but for RTS infants, toddlers, and preschoolers, weight gain is difficult. In fact, just a year ago, Nathan weighed 17 pounds, so he only gained 3 pounds in a year. As parents of our sweet RTS kids we spend so much time and worry about getting enough calories and proper nutrition into them so that they will grow. We spend even more time with nutritionists, speech therapists, occupational therapists and developmental specialists...all to help our kids gain weight and grow. So when there is weight gain...it's a huge thing to celebrate!

I do understand that weight gain in the opposite direction is a problem as our kids get older, but we tackle that one when we get there. For now...WAY TO GO NATHAN!

Sometimes...

Sometimes I find myself awake at night thinking about things that I'm sure I shouldn't be thinking about given the fact that I have been so sleep deprived. But they are there, they are real. I don't invite them in, but I can't just shut them off. So I entertain the thoughts until I drift off to sleep or my husbands alarm goes off meaning it's time to start the day.

Recently I have been plagued with the topic of what to do with Nathan when Jason and I are gone or no longer to care for him. O.k, I know some of you are thinking how ridiculous that thought is because he is so young. But the reality is is that we never know when that time will be. I have been told to not think too far out about Nathan's future because it just causes unnecessary worry and fear. Well, I am the mother of a special needs child and the reality is is that life is difficult, difficult every day. I do think about those things because I dream for my children, both of them. When I dream about Bella I see her as a confident individual doing whatever she sets forth to do...on her own. Able to make her own decisions (whether good or bad) and able to determine her own path. She will relish in her successes, learn from her failures and move about life as she chooses.

For Nathan, life will be much different. Our intentions are to have Nathan live with us his entire life if he is not able to live on his own. But what do we do for him when we are gone? I can't say that Bella will want to take care of him and have a live in brother the rest of her life either. Maybe she will, maybe she wont. I will never put that pressure or burden on her.

Will he have to go to a home for people with developmental disabilities? I can't imagine being pulled from my home and being told to live with a bunch of strangers who look, sound, smell, and act different. And what about the abuse that takes place in many of these homes? I have heard of the horrific acts that take place in some homes, especially with individuals that are non verbal. Other parents of adults with RTS have shared their heart breaking stories. Their stories are enough to anger me to the point that I fear for Nathan. I know this does not occur in every home, but the instances are higher than most want to acknowledge.

So sometimes...these are the things I think about in the wee hours of the morning. They are real, they need to be dealt with and just leaving them for a later time does not solve the problem. I need a plan, I need a solution.

Wordless Wednesday