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.

Saturday, October 16, 2010

Quiet Hearts

I am the mother of two children diagnosed with special needs.

Inside my chest, I carry a wounded heart.

I keep this hurt heart deep inside my body.

I barricade it with icy walls and thick steel chains, anything to keep it quiet.

Confined and isolated, my heart ceases to breathe.

But despite these protective barriers, these chains, these walls, this lack of air, my heart is still sad.

Everyday it weeps for my sweet children.

It cries because it remembers.

It remembers the words it heard so long ago.

Your child has Prader Willi Syndrome.

Your child has ADHD. 

My heart cries but no one hears it. My heart tears are silenced.

They are silenced by a ruthless spirit that demands quiet.

This spirit needs silence.

It needs silence so that it can face the mountains of troubling tasks it must complete.

The doctors, the therapists, the schools and the specialists, this spirit needs a strong soul.

It needs a clear and questioning mind.

It needs a healthy body.

It needs a quiet heart.

So, my patient heart is gagged and suffocated.

Sacrificing itself selflessly for the sake of my spirit.

Enabling my spirit to endure the hardships of a life of locked cabinets, temper tantrums and scratched skin.

But heart tears are heavy.

Sometimes, they find the power to silence my strong and hardened spirit.

The tears flow freely into that hidden spot inside my chest.

They break the steely chains, knock down the icy walls and free my heart.

Empowered by this new freedom, my heart punches that hardened spirit with a mighty blow.

My tired body, my spirit, my soul, all surrender quickly to the new found power of my heart.

It is an exhausting experience, this river of hindered tears.

Every part of me is tired.

But when it is over, I feel different.

Purged of this load, my hardened spirit is a little lighter. Why, I do not know, for I am still sad.

But somehow by releasing these hostage tears, I begin to accept my role in living this challenging life.

My heart can finally breathe. At least for a moment.

I understand that my life will always be filled with this mourning, this sadness, and this pain.

It is my heart that reminds me to feel this pain, to release it.

It is my spirit that reminds me to carry on, to embrace the difficulties that come from raising children who needs me.

What I have learned is to appreciate both.

For it is my heart and my spirit, the blending of the good feelings and the bad that brings me closer to understanding and embracing this challenging, this beautiful...

This bitter sweet life.

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