Go Back to Sleep, Now

"Go back to Sleep, Now." Simple words of a beautiful lullaby on Cannon's favorite CD that is one of the best ways to soothe him. At 1:00 o'clock in the morning, after screaming his Dad into another room for the night, those words are pleading with my baby to get the rest his body is craving. My whispering, my cuddling, my rocking and everything else I've been desperately trying has failed. I roll over and hit the 'play' button on the CD player and my precious little baby lets me give him his pacifier and hold his tiny hand in mine as his body relaxes and he finds sleep for the moment. It is now that I may finally close my eyes and sleep. My tired soul cannot find relief. In turn, the music that calms my baby reminds me of how precious and sweet his little life is. As I look at his peaceful expression and think of all that is going on inside his imperfect body, I let go.

I let the tears go.

And go they did.

Along with the thoughts of what I have to face- what other moms have already had to face. I don't understand! Then the question hits....

"Why?"

Why does this unforgiving disease have to exist? Why do innocent little babies have to have such a life that they cannot even move their own heads? Or move their own arms and legs? Why must they have seizures, twitching, failure to thrive, twitching, nerve damage, brain damage, kidney stones, feeding tubes, swallow studies, surgeries and the constant struggle to breathe? Why can they not have rest and peace to at least get sleep and escape it for the night? It doesn't make sense to me. I want to know how to fix this. How can this be fixed? There MUST be a way that this can be fixed!!! I don't want a life for Cannon that was frustrating and difficult and miserable for him only to have it extremely cut short. I keep dreaming of the night that I will be able to sleep again- but then I remember what that would mean- that would mean Cannon wasn't here anymore- and with that thought I NEVER want to sleep again. I want to hold my baby and never put him down. I want to be holding him now, but he just fell asleep and you NEVER wake a sleeping baby, even if it is to hold him so close you can feel his heart beat against yours.

I received some good advice from a father of a brave little boy that lost his battle with Menkes. He told me, "Don't live for a funeral- live for a cure. Cannon is still here and you still have a chance." I pray that can be the truth. I pray for Dr. Kaler (the main Menkes research doctor) to be inspired and have clarity to move forward with his research and his findings with the ravaging disease. I pray that all the precious little boys that are fighting so hard to stay out of hospitals, or get out of hospitals once they are in, will continue to fight as we, their parents- along with the doctors- fight too. Fight to find a cure. I've never felt so incredibly responsible and helpless at the same time. I wish I had gone to medical school so I could be smart enough to know what to do and how to help. That is why I pray for Dr. Kaler. He did go to school, I pray he is smart enough- that he will soon learn what it takes. I pray that us parents, collectively, will have the inspiration on behalf of our children to work together with Dr. Kaler and FIX IT!

"When you wish upon a star... makes no difference who you are... Anything your heart desires will come to you." Words from another song on this beautiful CD that is now keeping my baby peaceful. My heart longs for those words to be true. I wish I may I wish I might... all my prayers will come true tonight.