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.