The last few months (since my own personal "D" day) I have been struggling. I struggle to cope with the enormity of the situation before us. I struggle to maintain my friendships. I struggle to understand all the medical gobbledygook that is spoken by the gaggle of doctors and therapists we see on an almost weekly basis. I struggle to carve out any time for myself and find my mind is often stuck on shuffle mode jumping from one thought to another. I struggle in my understanding of all things insurance related and often take my frustration at the greatly despised red tape out on unsuspecting customer service reps who utter the phrase, "I understand your frustration." (I seriously doubt it) I stuggle. We all struggle. It is part of life. (Yes, I say this to myself often)
One sunny afternoon, while Rae napped in her Mimi's bedroom, I wept at the kitchen table. Sobs racked my body. My voice became raspy. My eyes red and burning from the tears. My mother sat across from me...struggling. She has always offered me her ear, her shoulder, her wisdom, and a soft place to land. But this time was different...at least for me it was. There were no words that would soothe the sting. I confessed things to her. Thoughts that have been building up over the last couple of months fell all over themselves to be spoken aloud. That is when I confessed that I didn't want a miracle for Rae.
As soon as I spoke it, I felt guilty. In my mind I saw a miracle, wrapped up in pretty paper with a giant bow, a miracle that God had prepared just for Rae and I was shoving back to Him across the table firmly telling Him, "NO!" I was willing to turn down a miracle and sentence my daughter to a life of constant struggle. I felt horrible! In that moment I felt like I could possibly be the worst mother ever. But I just couldn't accept something (not that is was being offered...I am not delusional...God nor angel has offered me an instant cure for Rae) of that magnitude. Here's why...
I would want it for all the girls like Rae. We are all in the same boat (granted there are many variations, but we are all living with Rett). We all deserve the same miracle. I guess that is why so many families throw themselves into funding research for a cure. None of us want a miracle just for our own child. We want a miracle for all of our children.
For information regarding ongoing research
you can visit Rett Syndrome Research Trust.
*For clarification: If I woke tomorrow to discover that Rae was whole, no mutation, no deletions, no low muscle tone, no Rett, and called me Momma I would run around screaming at the top of my lungs about the miracle that happened during the night. I would never say no that gift.