The Lord has recently brought a blessing into my life, in the form of another mother who has a child that suffers with Essential Tremor. Through her openness and candor I have been able to finally speak with someone about my questions and fears, my efforts and the very emotional aspect of having a child that is going through or will be going through so very much.
We are still new to each other, but I can see a friendship forming. Better yet, though I hate that any other child has to live with ET (and especially that hers is severe), I no longer feel alone. The same way meeting another mother who'd been through the Zavanelli Maneuver in childbirth after five years of being the only one with such a horror story brought me some comfort and closure. I am not alone.
I have been very emotional about the tremors lately, as I get before each school year begins. I know that this year brings a lot more writing, which means more chances for her to fatigue and the nerves in her precious hands to lose control. Today I wept openly after she went back to play, having minutes before asked to have piano lessons. Piano is a gift to those who play it; probably more so than to those who hear it. It has long been an expression of my soul and a way for me to pray, or to expose my heart to the Lord and to the world. I am not good at it, but it brings me such comfort. (I still need a piano, but the keyboard was even wonderful to play and far better than not having either.)
Anyway, I was feeling the flood of comfort in my playing, rough as it was, and I smiled that my little girl wants to play too. The next second tears streamed unbidden down my cheeks as I realized that here, too, is yet another joy in life that her hands can take away from her someday. I realized again for the umpteenth time that so many of her favorite things, so much of who she is, is hands-on. What will happen to her when she cannot color or draw, or write those little stories she is now famous for? What happens when she has to hand in a resume to her dream job, laden with restrictions?
It is hard not to have these questions. Any mother would, I believe. It is also hard to be told to just trust God because He is so great that miracles can happen. I know that miracles can happen, but I find myself wrestling with using them as sole proof of His greatness. If you use them as a measure, then is He no longer great when you do have to watch your child suffer? Is He any less miraculous when He chooses to leave pain unconquerable, and obstacles in the way of everyday life?
The answer is, of course, no. So, while I pray my heart out that I can be so diligent in watching for and preventing triggers that would cause her condition to progress, I am not waiting for healing. I welcome it, should it come, but I also know another thing about God pretty well by now... He is great in the bad times and in the low places. He is as amazing, if not more, in the valleys as He is on the mountain tops.
I cannot control the fact that my baby was broken at birth. I cannot control the fact that her DNA sparked a condition that was meant for late adulthood, or that it could lead to a debilitating life for her. I can only pray from the heart and raise her from the heart. I will always tell her that she can do anything she puts that precious little mind to, because she can. I will always hug her the hardest, hold her the tightest, care for her the deepest and love her the most unconditionally... AND I can always be there.
Just like strangers who came into my world with open hearts and similar heartaches. Just like true friends who stepped up when I was in the greatest need. Just like a Savior who knew me before I had three cells to rub together. I can be there for her. Better yet, God can be there for her. I know He will.
That goofy little girl who loves to play makeup, writes and illustrates silly little stories, does any and all crafts she can get her hands on, makes up awful combinations for surprise dinners, and who just plain steals my breath away every minute of every day will not be alone. Everything will be okay, and she will be happy and loved, no matter what mountain or valley life sets her in. This is the true greatness of God. This is the true miracle.