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, January 24, 2012


Pete is feeling better, his body is on the mend.

He met with Dr B, his hand specialist in Boston today. The doctor was shocked by Pete's amazing capacity to heal. It has been only 3 days since his surgery. His finger was so improved, she asked if she could take some photos to document his speedy recovery.

With his finger so well healed, the good doctor gave him her blessing to return to work next week, light duty only. She was happy to put Pete back to work as he begged her to do, but she warned him that if he doesn't take it easy and he returns with a re-injury to the finger, she will make him stay home for 2 months!

I think Pete got the message.

The orthopedist doctor made him a special hard plastic device that he can wear over his finger to protect it from injury.

We have taken some much needed rest together as a family...and we all feel much better.

As a family entrenched in the life of parenting children diagnosed with special needs, sometimes there are gifts in the rubble. And one of them, I believe is resilience, the ability to persevere, to support each other through the difficult times and come out on the other side feeling somehow stronger and more appreciative of one another.

We are meeting this week with a geneticist/psychiatrist who believes he can help us in our next step in treating Nicholas. We are also meeting with a special needs attorney/advocate who will advise us and hopefully accompany us on our upcoming IEP meeting with the school.

I cannot explain it, but I feel somehow rejuvenated and ready to move ahead in a positive direction for our family.

I would like to thank all of you for your well wishes, your prayers and your support. Your words comforted us, your prayers were like medicine.....we are truly blessed.

Thank you.

To my brave husband, I dedicate this poem to you...

by William Ernest Henley (1849 – 1903)

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.