Tales of the Toot

'Cuz special needs kids need special mamas!

When Your Nightmare Becomes Your Reality January 13, 2010

Dramatic title, huh? Maybe not- if it’s YOUR truth. As moms, we hope, dream, wish, and pray for nothing but health and happiness for our kids. From the time they are in the womb we are dreaming big for them. We are tenacious in our love, and fierce in our instinct to protect them at all costs. Is it any wonder that we are then shattered when we are told they are sick? Can we help but feel that there is no hope for all the dreams we had for them?

Let me tell you something, mama. Don’t stop dreaming.

When my sweet little boy was diagnosed with an ultra-rare disorder, I felt robbed. Robbed of the ability to kiss all the boo-boos away; robbed of a “normal” life for him and for me; robbed of the dreams that I had for my little boy. I cannot tell you how many nights I literally lay on the floor in his room, sobbing and praying and asking “Why?” And then I realized…

If I stop dreaming for him…I am robbing him….I am robbing myself. So, I looked around at the blessings, the joys, the wonders of all that he is. And, I thanked God for every good day we had and made plans to have as many of those good days as possible.

It’s not easy having a child with special needs. We don’t fall into the “normal” category, but we make it work. We’re okay with being “special”.  Today, I dream of a cure, a holiday season without a hospitalization, a transplant and a life without a dialysis machine. In the meantime: we take family trips, we play, we LIVE and we DREAM.

We have vowed to make everyday count. We will not let this disease define our family, our son, or how we live – and we will never stop dreaming.

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