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.




Wednesday, February 16, 2011

Our Healer, Our Hero

I dedicate this post to the memory of:

Dr. Stavros Hadjiloizou
Pediatric Neurologist and Neurophysiologist
Dr Stavros was a Pediatric Neurologist at Boston Children's Hospital from 2003 - 2007. He moved back to his home country of Cyprus in 2007, where he founded the Cyprus Pediatric Neurology Institute (CPNI) with his colleague Dr Paulo Nicolaides. Together they offered, for the first time, a place in Cyprus where many young children who suffered from neurological illness could receive treatment.

He was a member of Doctors of the World and founded the Cyprus Child Development Foundation, which treats children with multiple disabilities and neurological issues.

Dr Stavros died of a massive heart attack on Dec 22, 2010. He was 43-years-old, husband to wife, Machi, and father to 14-year-old daughter Semeli and 9-year-old son Iasonas. On Christmas day, his family donated his organs for transplant giving hope to four suffering fellow human beings and their families.

We learned of this news on Monday during our latest Neurology appointment for Nicholas.

I am heartbroken.

I am saddened beyond words.

When Nicholas was 3-years-old, Dr Stavros diagnosed him with ESES, a rare and insidious form of epilepsy. Over 80% of Nicholas's sleep was interrupted by subclinical seizure activity. He experienced absence and drop seizures. He lost cognitive and occupational skills. His behavior began to worsen. Under Dr. Stavros's instruction, we began an immediate course of medication treatment which lowered the frequency of Nicholas's nighttime seizure activity and stopped further cognitive and physical delays.

Dr Stavros saved Nicholas's life. But more importantly, he saved the quality of his life. How do you ever thank someone for this?

Dr. Stavros had an inner light, a warm spirit that radiated kindness and generosity. He would place Nicholas in his lap and ask "How are you today, my friend?" He made us feel like we were his favorite patients. I suspect he made all of his patients feel this way.

He was kind, friendly and funny, making jokes about his last name and how no one could pronounce it, or spell it!  He had an inner peace that seemed to come from doing what he loved to do...helping to heal children.  His smile was genuine. His happy energy and positive spirit was contagious, warming all who worked beside him.  He was one of those unique individuals who could make you smile simply by standing next to you.

He quickly became a good friend to us, spending hours with us in his office answering all our questions and alleviating our fears about epilepsy. So often he would stop me in my "panic mode" and remind me that we were a fortunate family since Nicholas's condition was indeed, treatable.

He wasn't afraid to share his personal life with us, explaining about his dream to move back to Cyprus and start a unique Neurological Center for the many suffering children and their families. When the day came for him to leave, I cried selfishly, knowing we were losing a very special man in our lives. 

Dr Stavros was successful in achieving his dream. The Cyprus Institute of Child Neurology is a thriving medical facility, a place where many children and their families receive support and care. It is a shining legacy to Dr Stavros and his beautiful dream.

Since we have heard the news of Dr Stavros passing, my husband and I have been in shock, desperately trying to hold back the sobbing tears that want to flow furiously from our hearts. It is hard for us to work or function in our daily lives. We are both saddened that the world has lost this special spirit, that we have lost such a warm and wonderful friend.

Dr Stavros passing has taught me that we expect much from the healers in our lives. We expect them to heal us. We expect them to be perfect. We expect them to always be there. We do not expect them to die. We have many expectations, we have few words of appreciation. I realize now that the healers in my life are indeed human and not exempt from God's hidden plans for all of us.

So, thank you to all of the healers in our lives. We appreciate all of you.

Thank you Dr. Stavros. Your assistance to us during our most difficult and heartbreaking time was like a gift sent directly from God.

We miss you and feel the great loss of your presence, your shining light.

It is a sad time for us for you will always be our healer, our hero.

Reluctance
Out through the fields and the woods
And over the walls I have wended;
I have climbed the hills of view
And looked at the world, and descended;
I have come by the highway home,
And lo, it is ended.

The leaves are all dead on the ground,
Save those that the oak is keeping
To ravel them one by one
And let them go scraping and creeping
Out over the crusted snow,
When others are sleeping.

And the dead leaves lie huddled and still,
No longer blown hither and thither;
The last lone aster is gone;
The flowers of the witch hazel wither;
The heart is still aching to seek,
But the feet question "Whither?"

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?

by Robert Frost
I'll see you again when the stars fall from the sky.......and the moon turns red over One Tree Hill
by U2

Our sincerest condolences to his family and co-workers, we think of you and send our prayers.