Saturday, October 19, 2013

Excitement is Building

When Ayden Jane first decided to do the One Small Step 5K she was so excited and was ready to go.  She wore me out walking and deciding to go extra times....  Then, as her excitement waned we started her chain.  Excitement once again through the roof!!  Well, as things became busy and the numbers of chain links being added slowed... the race again started to seem very far off.

Today we were talking and I told her that it was just one week away.  She could grasp that and was ready to head out the door and hit the trail hard.  We walked and talked,... and talked... and, well you get the idea.  I told her how there would be a kids run and the big run.  She said she wanted to do the big run because so many people were cheering her on.  Very cute.

We also talked about how she will meet other kids with Prader-Willi Syndrome.  She thinks that is cool, but there is some curiosity there as well.  I don't think Ayden Jane really feels like she is all that different from her friends and is only just starting to realize that not all kids do therapies, blood draws and have several doctors.  I'd have to agree with her that she is mostly just a typical Kindergartener.  It will be interesting.

We definitely want her to be Ayden Jane, awesome little kid.  Not the PWS kid.  I think we have succeeded with that, at least for now.  She does not feel any limitations due to PWS.  In fact, I'd say she almost has the opposite problem.  She is convinced there is nothing she cannot do.  Ha!

It will definitely be a fun week! 


  1. AJ is such a trooper giving so much inspiration even to 27 years old.

    Well, even if she has limitations, she tries to find the way to do what she wants anyway.
    She grasped that the shortest road is not always the straightforward one.
    Many, many folks don't grasp such a concept at kindergarten.
    In a certain way, you can be blessed to have a kid more intelligent than her peers.
    No, I am not talking about IQ (and IQ score is not the person's identity).

    I can relate in her not feeling a PWS kid.
    Since she knows only life with PWS, it is her normalcy. It is her human condition.
    Of course, you played a role in this, but at her age, the disability is a sort of normalcy.
    In this sense, children react in a more natural way to disability than adults. May sound odd to you, but this is what I notice.
    My stepbrother asked us why do I hear only from one side and why do I need to take meds and why noise hurts me. He was content to hear "because I was born like that".
    For this very reason, I encouraged you to answer the questions about the why of her diet "because she has Prader-Willi syndrome" the same way someone with celiac disease would say "I don't eat gluten because I have celiac disease".
    Honesty and straightforward is the best policy.
    After all, disability is not a four-letter word as we say in France !

  2. Hi, My name is Ashley Crist and I am from Mobile, AL. I recently had my first child in August. Two weeks after birth we found out the he has PWS. I begin to do research online and quickly found that I needed to hold off on the research because I had not prepared myself for what I was about to see/read. I began to just tell myself that my son will tell me what he can or can't do. He is now two months old and doing well for what they told us he would do. I recently decided that I was going to see if there were any blogs that I could read to kind of understand what was to come. I came across your blog and wanted you to know that it has helped me so much! Thank you for that! We started PT and OT this past week so I am curious to see the progress that he will make. Connor is still on an NG tube because he is not taking all of his feeds, but is getting better. I was also reading that you went to Florida to visit a specialist, Dr. Miller. I am happy to say that I already scheduled our first appointment and we go November 20th. He will start growth hormones the day that we go. Yesterday, I got a call from our genetics Dr. and we found out that his PWS is UPD. I just want you to know that I love reading about Ayden Jane and that I think she is precious!!! Your blog has helped me deal with everything so much better and has given me hope for the days that are coming. Thank you!!

    Ashley Crist

    1. So glad that my ramblings are helpful. You were smart to just tune out the internet for a bit. As you get into it you will find the PWS groups and sites that are hopeful and positive. Just remember that we really can't look too far ahead as the adults out there with PWS just did not have the advantages that our kids do. In fact, I hope that Connor and others just starting out will have it even easier than we have. So many pieces are being uncovered with this crazy syndrome. Sounds like Connor is off to a great start! Feel free to ask me questions (I won't promise I'll have answers but I will try) and I will continue to ramble on about our crazy, not so little anymore Ayden Jane.