After my daughter Zoe was diagnosed, I would find myself in the middle of the night at my bookcase searching for the right book. I had filled more than two shelves, overflowing with books about understanding the special needs child. Books about epilepsy, sensory disorders, inclusive education, cognitive issues, and in a way.. all of these books were helpful. Reading all of these books taught me to parent with more confidence. Yet none of these books helped me to feel less afraid, or less lonely, because these books weren’t every day, real stories, about simple moments of parenting a special needs child.
I wanted to feel encouraged and needed to be understood. I was feeling left out in my social circle of typical moms and craving the common bond- of knowing another Mom like me, living a similar life.
Women everywhere have always talked about motherhood and connected with a common bond; in the produce aisle at the grocery store, in the waiting room at the pediatrician’s office, the hair salon, and thanks to blogs and online communities.. on our laptops and Ipads. We are experiencing moments of affirmation, understanding, even comfort if that is what we seek and it’s happening when we share our stories.
In the beginning the connection might be all about research , but I reached a point where I didn’t want to read anymore about appointments, or therapies or unanswered questions. I wanted to live in the moment and celebrate whatever life was going to be, the simple moments. And that’s what I set out to do, share our story, in an honest, and encouraging way.
My words have been parked on my Special Needs Mom Typepad blog since my first post in April 2005. It was easy to start writing , hitting publish at the end of each story. Over the years, as techology has progressed it has only gotten easier, I have cried on my keyboard, winced a little embarrassed , full of self doubt as I read my own final draft. I felt elated to share success, and other times felt discouraged, but through all the blogging, I have somehow felt a little less alone.
There is no road map, no instruction manual. You just do your best to get through the day by day, living life to the fullest. We go months, just living a typical family life and then something else comes along.
Things changed for me with Zoe’s original diagnosis, and again later with Olivia’s. I look at life differently and can’t explain how grateful I am, for even the smallest graces .
My friends would tell you that I am strong, tireless and when I need to be.. tenacious.
There was a time when Zoe and I were in the hospital a lot. I would fold my six foot body into her hospital bed and try to soothe her fears. I held her for repeated IV's, blood tests, and high fevers.. And during those times... I never cried. She would ask for Daddy, her big sister, and even sign to go home.
And only when we were home, after many nights of hospital sleeplessness, after bathing her and tucking her into her own bed , after holding her big sister and drying her tears, would I finally cry. Sometimes standing in the hot shower, sometimes laying in my bed staring at the ceiling. These episodes changed me.
By sharing our story, I have learned I am no different than any other Mom. We don't just hate it when our kids are sick - it hurts us and we take time to heal. We are protectors, nurturers. Instinctively, we want to gather our children in and keep them safe. Seeing them suffer,weakens us, making us question how much can we handle.
Feeling vulnerable, I shut out the outside world and focus all my energies and resources on making them well. And somewhere, I find my Mother’s strength, the energy to comfort the hurt away, to heal and to smile and laugh with love, and share our happy ending.
And that’s the everyday I celebrate, the laughter and the loving.The way children amaze and inspire us to push away the tiredness and tears.
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