Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, December 9, 2014

Little White Houses for You and Me

One of the biggest hurdles I face as a parent of a child diagnosed with PWS is conquering my fear, particularly my fear of the future. There is not a day that goes by that I do not wonder in some way, what Nick's life will be like.

What will happen when I am not there to guide and protect him? How will he manage on his own? Will he be happy? Will there be a therapy available by then that will help him to manage his uncontrollable urge to eat so he may live on his own? Will he find love?

What I have noticed in my sensitive son is a unique ability to answer these specific questions and address the gnawing fear I hide. It is almost as if he has a magic mirror that looks directly into my soul. Without me saying a word, he understands the pain in my heart and addresses it directly.

Lately he has been telling me things like this:

"Mom will you come and visit me in my home when I am older?"

"Yes, of course I will Nicholas. I can't wait to come over for a visit. Where are you going to live?"

"I am going to live in a white house with two white garage doors and a silver front door. I am going to have a garage door opener that is grey. There will be a white key pad on the wall. I will have a red brick gas fireplace that will turn on with a clicker. Don't worry Mummy, I will let you click it on and off."

"That's great Nick are you going to have any children?"

"Yes, two."

"Girls or boys?"

"I am going to have two girls, Dora and Milly. I am going to cook you dinner when you come and visit me. And sometimes we will go out together. We are going to have so much fun."

With a contagious enthusiasm, Nick's provides many precise details of his vision of the future, so much so that I find myself actually believing him and wondering if perhaps this is his intention?

With the purity of his belief and the intensity of his optimism, once again it is my son Nicholas who teaches me of life, encouraging me to embrace tomorrow and see it for what it really is...just another opportunity to share love with others.

I believe in his dream.

Little white houses for you and me.