One Small Step



Yesterday was the big day.  So many pictures will come, but I just can't wait for them to post about our day.  We got up and had breakfast.  I packed long pants for AJ because it was going to be COLD (by SC standards anyway) but Ayden Jane had running shorts in mind.  She informed me that she had a race to run and that she had to wear running shorts to do good in the race.  No sense in arguing that point.  We arrived and Kayla and the Clemson crew were already there so off she went. 

 

 

First up was the kids fun run.  Ayden Jane was not interested at first because she was there to do the big run!  She changed her tune to help her little friend Ellie make it around the course.  Very cute. 

 

Then off to the big run! We started and were going to walk with Daddy and Gwyn and Ellie.  After Ayden Jane heard Gwyn say the winners got medals she decided we needed to run.  We ditched Gwyn, Ellie and Daddy!  As we were running AJ was telling me how she hoped I was ready because she was going to run the entire race so she could get a medal.  I know enough to just agree...  Honestly she surprised me how far she actually did run!  She may run cross country yet!

 

As we walked Ayden Jane just kept telling me how so many people were cheering her on and how so many people loved her.  She was amazed that all these people came to walk with her. Ha!  She finally conceded that a few were there for Ellie and Riden, but was still pretty sure most of them were there for her.  You gotta love that kind of confidence.

 

We finished the whole distance and she was very proud of herself.  Mckenna, Kayla and the Clemson crew were at the finish and ran the last part with her.  So sweet.

 

Once the business of the day was done AJ was off to play and make new friends.  You'd think she would be tired, but she hit the bouncy house and blow up slide hard and kept at it!  We rounded out her day with a visit to Ellie's house which thankfully Gwyn was willing to let us check of her agenda.  All in all it was an awesome day.  Ayden Jane knew she had accomplished something great.  She knew the whole world loved and supported her and asked as we walked, about the names on her chain.  She left feeling like somehow things are a little closer to solving PWS and 'fixing her Krebs cycle'.  I know that feeling of love and support will surround her and hold her up when PWS tries to knock her down.

 

Ya'll are amazing.  I cannot thank you enough for taking time, sending money, saying prayers, stopping to ask her about her run...  As her mom, I want to take away all the struggles and fix the challenges.  I want to keep her safe physically and emotionally.  I want her to be happy.  Yep, pretty much the same as every mom wants.  Only, when your kid works so hard at .... everything and is seemingly only one illness away from a cascade of problems life is stressful.  We do our best to keep life as typical as possible for Ayden Jane, but just the fact that she knows what a Krebs cycle is and can discuss nutrition, supplements and blood levels at age 6 tells you there is only so much we can do.  Taking this journey with people like all of you makes the stress bearable and the joys and accomplishments so much sweeter.  Hopefully you can see the giant grin on the amazing Ayden Jane.

 

 



 

And just in case you missed the link to Ayden Jane's fundraising page (the kid brought in nearly 1300 dollars!)  Here it is: Ayden Jane's page