The night can only last for so long ….
It was 1am when the doctor came in and told me he was calling Children’s hospital for transfer orders. I needed my sunrise, the promise of a new day, the gift of another day with this little girl. I counted the hours until morning knowing that it would not come soon enough.
We had been in the ER twice now in a months time. It started with a slight tremor in her left leg, followed by sleepless nights and then the discovery of what I knew was the dredded pressure sore. Elizabeth has had them before, 2 actually and both of were on each of her big toes. Compared to what we had been through with Elizabeth in the past, pressure sores were a welcome problem as they are easy to diagnose and heal.
In having a child who cannot speak you often find yourself literally guessing at what is wrong when you know things just aren’t right. I have a list I go through beginning with are you hungry, thirsty, tired … does your back hurt, would you like to watch a movie? Over the years I have taught Elizabeth to click her tongue for yes and shake her head for no. Now this is not an exact science and on any given day the Queen of England joined us for dinner the night before but it does work for us and there are more times than not that I can figure out what she needs.
As her pressure sore began to heal I noticed that the tremors were getting worse. Our sleepless nights were turning into days upon days of no sleep, 72 hours and counting since Elizabeth or I had closed our eyes for more than a few minutes. The tremors turned into full body shakes until finally seizures were upon us. A visit to our pediatrician ruled out the obvious …. the flu, an infection, fever; we went through the entire gamut and came up with a game plan for the next few days. By Sunday evening I knew that we were worse and the call to Children’s was made. This is much like in the movies … you know the red phone that rings only when something is truly wrong and that when it does ring everyone stops and stares at it, no one wanting to be the one to answer it. There is protocol when you call “the red phone” and you suddenly lose your mom title and you are at a job interview answering questions about your resume. The awkward silence from the other end usually means one thing …. you will be calling 911 in the next 30 seconds.
Over the next 30 minutes my house began to fill with firefighters, EMT’s and a police officer. There were 6 uniformed men and women standing in my bedroom, each of them asking question after question taking me all the way back to the day she was born. I think my wealth of knowledge of her medical history was a bit intimidating for them. They asked me to move her from my bed to the stretcher and before assessing her asked me to show them where to get the best blood pressure reading, could I please place the leads on her arms and chest and how do you spell Baclofen …. I had their respect as Elizabeth’s advocate. I knew this was a pain issue, somewhere inside her tiny body the pain had gotten ahead of us. An IV was started, blood work ordered and when I asked for an x-ray the nurses gave me a puzzled look. And what would you like x-rayed I was asked in a tone that could have easily awakened the mama bear that lies dormant until disturbed. I smiled, the smile that you see too often when trying to be nice but those that know you take a step back when it appears and explained the scoliosis surgery, the possibility of a hip that could be out of socket.
1am and the diagnosis was a hip that was 100% dislocated, had been for quite sometime and a femur that had shifted with such force it was bulging from the side of her leg. It would require surgery and it was a year ago all over again. The 3 hour trip to Little Rock gave me just enough time to scream at God and question why in the world we were here again and why now … He knew that I had the weight of the world on my shoulders. His timing and mine do not seem to coincide and I would really appreciate it if we could get on the same page with a few things. I have no idea how God puts up with me or even why as this is my common pattern with Him. I scream, He listens. I scream some more, He listens. I vow to never trust Him again, He listens. Not now, just not right now I told Him because you know it’s all about my plan and how it works best for me.
So here we are, AGAIN … surgery within a month, sooner if the doctor can clear his schedule. Life is not easy right now and much like last year there is turmoil within the family, within myself. I am struggling with decisions that I have no control over or any understanding of. So much like last year I stand here questioning God and His plan, why I am in the same place I was in exactly a year ago? Did I wander to far, did I forget who was in control … I am fairly certain the answer to these questions are yes.