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, May 28, 2013

I am Just a Girl

The greatest challenge I face, as a parent of a child diagnosed with Prader Willi Syndrome, is my inability to face my fear.

I am afraid.

I am afraid that if I neglect appointments, therapies or new treatment options, my son's life will suffer.

I am afraid if I do not make a better effort to manage his anxiety and resulting behavior, he will become a monster.

I am afraid, if I do not secure our home he will wander the neighborhood searching for food and instead find harm and danger.

I am afraid if I am not a "good enough" parent, my son will die.

I have been running away from this fear all of his life.

It has finally caught up with me.

When my son Nicholas was first diagnosed with this monstrous syndrome, I experienced a type of shock. I buried my fear by devoting my life to a constant state of movement. I figured if I stayed busy enough, I wouldn't have time to feel anything. Nick's complex medical needs made this warped philosophy a convenient reality.

I became selfless, devoting myself completely to my weakened child. This chaotic lifestyle took me to a lonely place where few folks in my life could relate. I lost friends and family members. But still I persevered. I tried to make sense of my suffering by researching many forms of religion and spirituality. Here, I was interested to learn that most, if not all of these beliefs shared a similar philosophical promotion of selflessness and a belief in its path to peaceful living and enlightenment.

The only problem was...I didn't feel enlightened.

All I felt was tired.

After much soul searching, I have discovered that perhaps my selfless intentions are somewhat misguided.

Am I being selfless because I truly want to be selfless?

Do I enjoy it and feel energized by the experience?

Or am I staying busy just to hide my fear?

These are difficult questions but I believe the answer is....

I am afraid.

I  am afraid if I allow myself to feel this fear, it will consume me.

So, I don a new persona. I compare myself to the likes of superheroes and soldiers and in the process I begin to lose myself. I bury my hopes, my dreams, and my health, so that I can better care for my son.

I have become a cartoon caricature and not a human being.

Last week, I got my wake-up call.

A visit to my primary physician indicated that I may be headed down the dreadful path of self destruction.

My blood pressure has begun to increase. I have always had low blood pressure. This shocking news made me think of my father who passed away suddenly from a stroke shortly after my first son was born. Realizing there was a good chance that I could face a similar fate, I did some soulful reflecting and found that my previous motto of "to do" needs to be replaced with a more healthy "to be" philosophy. If I do not find a more relaxed mindset, and do not take better care of myself, who will care for my children? This is, of course, my biggest fear.

I need to find my peace.

I realize however, that this will take some time.

I am considering things like exercise, meditation, and creating new hobbies. I am also visiting with a mental health professional who is well versed in the stresses associated with raising children with special needs.

I am learning that...

Before I can give selflessly to another, I must first be fearless in my understanding of myself.

I must realize that I am not a superhero or soldier, I am just a girl.

I am a girl with a very big responsibility.

I am responsible for the quality of life of a medically fragile child.

This responsibility often makes me tired and scared.

It is very OK to feel this way.

My son Nicholas has endured many medical, physical and emotional difficulties and yet he faces each one of these challenges with a sense of calm acceptance and fearless resilience.

It is this spirit that I need to embrace.

Ironically, it is my son who makes me want to become a better, more accepting human being.


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