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.

Thursday, December 29, 2011

The Grinch who Stole Nick's Christmas

Nicholas and I are at it again.

I am in clean house-ivity mode, anxious to "get things done" and "put things away".

Nicholas is in the "holiday mode".

He loves to see the warm colorful lights of the Christmas tree. He delights in lighting the candles in each window every night. He enjoys living in a house filled with decorations. If it were up to Nicholas, Christmas would never end. Holiday lights and magic would continue throughout the year.

But this week my need to control clutter has escalated. I am starting to notice a trend. It seems that when I receive difficult medical news or another new diagnosis for one of my children, my pathetic need to control "something" in my life goes into overdrive. I go on a cleaning rampage.

Nicholas, seems to instinctively understand this quirky characteristic in his mother, and goes on high alert.

He has become the Decoration Detective of the house. Throughout the day he makes his Christmas patrol around the house to ensure his wacky mother has not hijacked any of his holiday cheer. He carefully counts the lights in the windows and the ornaments on the tree, performing a careful inventory inside his little head.

I, on the other hand, have become more like the Grinch, tip-toeing through each room removing the bamboozles, the woozels, the clumtrumpets and trains.

Today, I see Nicholas distracted in the living room, and pounce on my chance to de-Christmas the house.

I hug our life-sized Frosty the Snowman and head up to the attic, quietly climbing the stairs to carefully hide the white plastic man from my adoring young son.

"Mummy, what are you doing?" I hear Nicholas shout from the living room.

"Oh, nothing...." I say and kneel on the steps. I try to become more quiet but bang my head on Frosty's giant mittens instead. Like a bullet fired from a gun, Nicholas climbs the stairs to investigate.

"Not my Frostyyyyyyyy!" he screams and starts to cry.

Fat tears fall from his eyes like rain.

"Mummy, you can't put Frosty awayyyyyyy!" he says as if I am sentencing our chilly friend to a lifetime of hard labor.

"No Mummy, pleeeeease!" he says, and now I too feel like crying.

"Wait Nicholas, I have an idea!" I say and immediately he stops crying. Once again those 4 little words have saved my life.

"Why don't we put Frosty in your room! That way you can still be near him. He can watch over you when you sleep! What do you think?"

And like a happy switch that is flipped on in his brain, he immediately shouts,


"Oh Mummy, that's a great idea!" he shouts.

I carry poor old Frosty back down the stairs and place him at the foot of Nicholas's bed. As I plug him into the light socket, Nick smiles and jumps onto his bed. He lies back and is immediately mesmerized by the cheery face of the watchful, shining, plastic man. He is happy.

"Nicholas, I am going to put some of the other Christmas things away now." I say delicately to my son.

"OK, Mom," Nick says agreeably.

The warm glow of the tall smiling man has relaxed my anxious son. Like a powerful sedative, it has calmed him.

I too am suddenly mesmerized as the vision of the tall snowman standing at attention at the foot of my son's bed. But this vision seems familiar to me. What is it? I think to myself. Something standing watch over my son......? And suddenly I remember the words from a story I wrote shortly after Nicholas was born,

My son lay limp upon his hospital bed. A yellow feeding tube was taped harshly to his soft cheek; it traveled up his nose and into his stomach. To his soft skull another plastic tube was taped, pumping antibiotics into his fragile veins. Around his floppy body, a brace made out of thick straps and stiff Velcro held his weakened hips in place. Feeding machines and intravenous poles surrounded him like quiet metal soldiers standing at attention. Everywhere, alarms sounded, a constant reminder that this was hell and we now lived in it.         (To read the story in its entirety, click here.)

As I see the tall snowman standing at attention at the foot of Nicholas's bed, my eyes start to water.

I am reminded of his infancy when instead of joyous snowmen, there were metal feeding pumps and tall IV poles standing watch over my fragile child. And although Frosty the Snowman may now take up permanent residency in my son's room, I am thankful for this joyous new image. I am thankful for Nick's health, his strength, his love for life.

My desperate need to clean the house is suddenly over.
My curse has been broken.

"And the Grinch found the strength of ten grinches plus two!"


inca said...

Lisa a very belated Merry Christmas,ha your house just sounds like ours!I was supposed to have my little prader boy but mom forgot!!!!!He has been on my mind the whole of Christmas can I e-mail you?I've taken some of the less noticeable decks down without beady eyes noticing!Lola hasn't eaten properly since the Big day and bed time has been a bit hectic,school next week and normality:)))Much love to you,hubby and your lovely boys and a very happy New Year sweetie xxx

Lisa said...

Merry Christmas to you too Becky and your lovely family! Yes, of course, you may email me. I took my email address off the face of my blog because I was getting a lot of spam.

My address is jalape04@comcast.net

That's the number zero and not the letter "o" in the address. Yes, I am also looking forward to school!

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