Thursday, July 29, 2010

We all have stories of how we got to where we are today........... I'm the mom to two incredible children - Chelsea and Bryan. I often tell people that I've won the lottery of motherhood to have been blessed with these wonderful children. I am equally proud of both of them. But then something happened and my life took a turn that I never expected. That something is called Rett Syndrome. I'm always amazed at the stories we all have to tell - how the forks in our road changed our lives and our paths forever bringing us to our destinies.

When I was a little girl my grandmother told me that if I didn't stop crying over every little thing that someday when I really needed my tears I wouldn't have any left. My grandmother was right about many things, but not about that.

After growing beneath my heart for nine long months, Chelsea Morgan Howells was born in 1991. She was perfect with beautiful blue eyes that connected instantly with mine. When she was about 10 months old, I noticed that her skills weren't keeping up with the schedules mapped out in the baby books. On the advice of her pediatrician I put the books away and let her set her own pace. But by the time she was 18 months old, I knew without a doubt there was something wrong. She still wasn't walking and could barely pull herself up to a standing position. She had also stopped talking. Her last words to me were "up, mama, up" as she raised her chubby little arms up in the air to me. Chelsea's pediatrician recommended I take her to a specialist. The pediatric neurologist was puzzled by her symptoms. Test after test came back normal. When Chelsea was about 3 years old, the doctor called us back into his office. Chelsea sat quietly on the floor of the cold, windowless room, ignoring the array of brightly colored toys before her. Breaking the silence, the doctor said the words that would change our lives forever. Chelsea has Rett Syndrome.

With grandfatherly kindness, he explained that she would continue to regress and lose skills and that there was no cure. Swallowing hard, I forced myself to ask the hardest question of all. "She's not going to die is she?" Gently taking my hand in his, he answered "sometimes these girls live a long life, but there have been deaths in the early years as well. They frequently die in their sleep or succumb to respiratory illnesses like pneumonia." He told me that she would never lead a "normal" life. Leaving the office, I searched for the strength and the words to tell my family that our precious little "sweet-pea" was far worse off than we had ever imagined. The days and weeks that followed were filled with tears. I wondered if I would survive the pain and heartache that followed me even into my sleep. In my dreams, Chelsea and I would walk hand in hand as we talked and sang songs together. When I woke up the wonderful dreams would disappear and I knew I would never hear her sweet voice again. I tried so hard to remember that last time when she had called out to me, "Ma-ma," but I couldn't. Rett Syndrome has robbed Chelsea of the ability to walk, talk, stand or even sit-up without help. She has lost all speech and has lost all purposeful use of her hands. Sign language is out of the question. We communicate through our eyes, our hearts and a good dose of ESP. She has frequent seizures that exhaust her already fragile nature.

The new life we have with Rett Syndrome is not one I would have chosen. But because it comes wrapped up in this beautiful child that is connected to every breath I take, I accept it and focus on what Chelsea can do versus what she can't do. I no longer cry for the dreams that will never come true. There will be no piano lessons, no ballet recitals, no whispered secrets, no giggling girlfriends at slumber parties, first dates or even a walk down the wedding aisle. The list of things that will never be is long, but the sheer gift of this child is greater than all of these things. I have her with me for now and while I can, I will hold tight to her and know that each day is precious.

At one point, I prayed and prayed that God would grant us a miracle. Then, one day as I was praying, I realized that God did indeed grant us that miracle. God had healed my heart and my eyes so that I could see that my child is perfect just as she is. She didn't need to be healed or fixed - it was only my perception that needed to change. I know how very blessed I am to have been chosen to be the mother of these two incredible children. They have changed my life in wondrous ways that I never expected. At night when I tuck Chelsea into bed, she looks into my eyes and louder than the spoken words could ever be, her eyes say what her mouth cannot. I reply, "yes honey, I know you do. Mommy loves you too."

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