Monday, May 30, 2016

Fun Times

It has been a while because life is BUSY. End of school year is busy. Mckenna's birthday. Memorial Day weekend with Allie here. The sun beginning to shine and summer fun underway.

Ayden Jane had a wonderful weekend. Saturday she had a birthday party to attend and then was thrilled to play with Kayla and Allie for the afternoon. 

Sunday we had church and then she went to see Jungle Book with some friends. She loves being independent and seems to have done a great job. She went with her friends grandparents who were in town and were willing to take on the challenge of Ayden Jane.

To top off a great weekend, she was invited to go to the water park today! One of her favorite places. I mean, combine water and speed and she is one happy kid. The family that invited her along was going to eat in the snack bar so I packed Ayden Jane's lunch box. My favorite words of the day from her friends Dad was, "oh, they will let us bring her food in. She has dietary restrictions so they will just have to deal with it."  It was music to my ears.

I did prep Ayden Jane both days. She knew she was allowed to have popcorn at the movie but there would be no candy.... Her friends would have candy and popcorn but Ayden Jane needed to be fine with just popcorn. She totally was, but having that conversation in front of the adults in charge of her makes it easy on everyone. I also sent a Hint water to drink.

For water park day I packed a lunch that had several easy to eat things. Cheese stick, blueberry keto bite, coconut bar along with some cottage cheese and frozen blueberries and her milk with MCT oil. I wanted her to be well fueled. That is our best defense. I also used the same tactic and told Ayden Jane with her friends parents there that if they chose to get dippin' dots or another treat she needed to be okay with that and think about how great it is to be at the water park. She answered, "no problem. I promise."

So they left at about 10:30 and brought her home about 5:30. Ayden Jane said they didn't even have to wait in line so I can't even imagine how many stairs the kid climbed today!

Sunday, May 15, 2016

Staying Positive

Whether by nature or learned, I tend to look at the positive. That comes in handy a lot when parenting Ayden Jane. I know, on one hand, what the diagnosis of PWS should mean for Ayden Jane. She should simply not be able to operate in a 'typical' world without help. 

By diagnosis, Ayden Jane should need special education support in school, but she is making great gains without it. She should need support handling situations where there is a lot of food around, but she walks right past the cookies and cakes without a care. She should not be able to participate in sports with typical kids... Special olympics should be more her speed. You get the picture. A million little ways every day....

So, the positive voice in me cheers with each passing day that she brings home a paper from school that she did well on. Cheers with each new skill she picks up in the swimming pool or on the soccer field. Cheers each mission she sets herself on - like running races and training hard. Cheers new friendships and happy days. I live in this positive land of joy and pride and incredible thankfulness to God 90 some percent of the time.

Then there are days when it just hurts my heart that she has to work so hard and there are things that she wants to do, she will never be able to do as well as she'd like.

I struggle with the gift that is Ayden Jane. I know that God made her. I know that God has a purpose for her life. I know that He opened many doors and showed me how to help her body and mind to grow and develop to their best potential. 

Her life is drenched in God's love and mercy. She knows Him in amazing ways. There is no complaint in her about it all, only thankfulness that we have found ways to power her. Concern for her friends with PWS. A desire to change the lives of others. All in a tiny eight year old package.

I pray for God's direction for her life and for His grace as I stumble my way through helping her. May my hopes for her not get in the way of God's plans.