Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.

Monday, December 8, 2014

Jolly Old Saint Jack-o-Lantern


My son, Nicholas has a warm and loving heart. When he loves someone or something, it is with his entire state-of-being. Heart and soul, head and spirit, it is a love as deep as an ocean.

To say he becomes attached to these objects of his affection, is perhaps an understatement. When it is time to put away seasonal decorations, he has trouble letting go. This Christmas was no different, as the lovable lad refused to let me put away our light-up jack-o-lantern.

"But why Mummy? he asked, "Why do we need to put my best friend in the closet?" Large tears begin to swell in his eyes as the soft-hearted Nicholas fears for the winter welfare of his tiny, orange friend.

"Can't we keep him out, pleeeeeease? he begged.

Now, I must admit, at first, the perfectionist in me became horrified. My brain's initial response was confusion. Leftover Halloween decorations mixed in with Christmas trim? That's not how it's supposed to be. But as the parent of a child diagnosed with PWS, I have learned to let go of  that kind of thinking. I have learned to forget about "how things are supposed to be".

Living with PWS, has made me resilient. I have learned how to roll with things. I have learned how to accept the unacceptable and most importantly how to embrace the unusual.

"You know what Nicholas," I responded, "Why not!"

I found Weston's old Christmas hat and placed it on the grinning gourd.

"Watch this Nicholas, I told my sensitive son, "Nothing up my sleeve, presto!"

"Jolly Old Saint Jack-o-Lantern!"

Nicholas claps his hands and giggles with glee.

There is no trauma, drama or tantrum, there is only joy.

Poor Mr. Pumpkin is saved from eternal exile in the closet.

Nick's deep and loving spirit is saved from heartbreak.

And me?

I am saved from myself.

I guess it is only fitting that a house with a Menorah and a Christmas tree should also possess a Halloween pumpkin or two.

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