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, March 5, 2012

A World of Special Needs

When my son Nicholas was diagnosed with Prader Willi Syndrome, I was afraid.

I was afraid of the future, afraid of my son and his illness, afraid I would not be able to survive this overwhelming new lifestyle.

In an effort to understand this fear, I started to write. The words became my medicine, a way for me to diffuse this crippling fear, a way for me to fight back. I used these words to help me find my inner strength.

I shared these personal stories with PWSAUSA, our national organization.

Some of my stories appeared in our newsletter called the Gathered View.

It was here that I found I was not alone. There were many parents who felt similarly. It was this camaraderie, this sharing of thoughts and ideas, that helped me to feel empowered. These precious relationships gave me the courage to face the overwhelming hardships of raising a child diagnosed with a life threatening disease.

The Gathered View is distributed throughout the country and the world. Soon, I heard from folks in California who like me, knew these hardships and understood these fearful feelings. I began to realize that by sharing my pain, I was helping others. I was connecting with individuals from clear across the country.

 Eventually folks from England, Hungary, Australia and most recently, South Africa, have asked permission to share my stories. I am humbled,

And suddenly, realize that my personal struggles are not that different from the struggles of parents from not only this country but from all over the world.

With the creation of my blog, this feeling of global connectedness has increased even more.

I no longer feel so all alone.

The world feels somehow smaller.

This pain, this fear, this struggle to raise my unique children, has helped me to connect with people from different states, cultures and countries. It has helped me to understand them better. It has helped me to develop friendships with folks whom I will never meet.

It has helped me to find peace in this world.

I am thankful to both of my children for opening my eyes and bringing the world to me.


Elizabeth said...

I feel the same way and am very grateful to have met you.

Isaac's Mom said...

I'm so thankful you write too!! I love reading about your precious Nicholas and Weston. It does make a difference in dealing with this disease. When you are feeling down, it brings you back up to know you aren't alone!!!

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