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Monday, June 20, 2011

1p36 & Death/ Wheeler Farm

I have been reading lots of blogs about 1p36 to try and get into the community and meet people.  I also wanted to learn as much as I could, and see what other kids are experiencing.  Even though the diagnosis is 1p36 deletion syndrome, it seems like it can vary so much.  I've read about kids that get very sick easily, some that have bone and calcium issues, some that have horrible seizures, a lot of them wear glasses, most I've seen don't really talk, etc etc.  I was trying to find a light or rainbow I guess, some good news.  But I guess I've realized there may not be great news out there.  Which is sad, but reality.  If you are curious to read more as well, there are a bunch of links to blogs at the bottom of Carter's blog here.

When we met with our geneticist, I remember asking her if Carter would go on to serve a mission, get married, have children, etc.  She said not likely, that he would probably live with us for life.  There are options as they get older to put them in homes where they can get proper care, especially if they get too heavy to take care of.  This hit me hard and made me sad, because I always thought in the back of my mind that Carter would go on to lead a normal life.  I know he's only 18 months, so only time will tell, but I wanted to know the hard facts up front.  So I can prepare-as a woman I look ahead, far ahead.  So I have decided to take it one day at a time....to be positive, and enjoy my little boy.  Whatever happens will happen, and I will just hope for the best.  I look forward to the day he can walk, because I know he'll be so happy to move himself.  And I can't wait to hear his little voice speak to me, or say "Mommy".  Even if that never happens, I just want him to feel as loved as possible.  I never want him to feel bullied, like he isn't good enough, or that he isn't "normal".  I want him to always be loved and have a joyful life.  We don't know the life span, because it is so varied and hasn't been around for long.  But however long I have my Carter, I will love him so much and be grateful for every moment.  He is my little angel.

If you aren't crying already, I wanted to write about a family that just lost their 17 year old daughter to 1p36.  Roberty Horry, a retired NBA player, lost his daughter Ashlyn.  He wrote a last letter to her, and since I can't share the link, just go to nba.com and type in Robert Horry last letter to Ashlyn.  It is really touching.  They started the Ashlyn Horry Foundation to bring awareness to the disorder and raise money and support.

WHEELER FARM
Last week DDI Vantage Early Intervention hosted a fun day at Wheeler Farm, for kids that get their services, or community.  It went from 10 am-12:30 pm and it was super fun.  They had blow up bouncy toys, face painting, clowns making balloons, different booths with games and prizes, a refreshments booth, wagon hay rides, and more.  We told a few friends from our ward, and we saw some there which was fun.  Carter had fun on the hay ride, but I don't know if he noticed the animals or not.  We had one of the clowns make him a balloon, a dog, but it pretty much blew up as soon as we got in the car lol.  Guess it was too hot.  I like these activities, because it gets us out of the house, and I feel more part of a community when I am around other kids like Carter.  DDI offers services like physical therapy, occupational therapy, speech therapy, child developmental specialists and more.  We had Carter evaluated at about 9 months of age, and he qualified based on their guidelines.  He was at about a 3-6 month level on most things.  So they set up appointments and started coming to our apartment.  That is the really nice thing about them, is that they go to your home.  They know kids are more comfortable in their own environment, and they will succeed more.  I also like how they write down goals and things to do until the next appointment.  It is super handy, organized, and I have seen the results.


2 comments:

  1. He is getting so big. I haven't seen him for awhile. You are so strong. I think your blog is great.

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