For the last month I have walked past my kitchen table a hundred times, which I have found to be my new favorite place to write. This may be because I converted my home office back into a formal dining room, because everyone needs a formal dining room!!
It’s by far one of my favorite rooms in the house and while it sits unused day after day I love how it makes me feel every time I walk by it. Okay so back to the kitchen … I think I have ripped 20 pages out of my journal that I have scribbled down some thought on simply because I don’t like the way it looks on paper. I sit down to write and find some reason to get up, usually it’s to walk past the dining room, as if it is going to give me some kind of inspiration to write the next #1 on the NY Times Best Sellers list.
Fall began today, my very favorite time of year. That crisp smell in the air that comes with my favorite color of red that blankets the mountain side and yes even the early evening hours when dark ascends on us much earlier than summer … I absolutely love this time. But what I really found myself focused on this morning was this rear view mirror that I have become so fixated on over the last few months. There is no denying that this summer was by far the hardest time of Elizabeth’s little life. What started in late May followed us all through this season of summer and it stretched for miles and miles behind me, as far as the eye can see. This is not the first time I have been guilty of living in my past and I know it will not be my last by a long shot, but this long, hard and very trying summer consumed me.
Having a child in pain, whether or not they are special needs, have been diagnosed with a sickness, healthy one day and terminal the next … having a child in pain is by far the most helpless feeling in the world. For me I found it especially trying since Elizabeth can not speak. She can’t tell me what hurts, where it hurts or how much pain she is really in. So you guess, then medicate and over medicate and guess some more. No child should have to live in this kind of pain. The doctors were stumped, something that is as equally as frustrating as having a child in constant pain. So we started with the obvious … the hip. One, two and three different Orthopedic surgeons who all had differing opinions. Surgery, pain management and lets revisit this when she is 17. From the hip we went to pressure sores or pressure ulcers. These gaping, open and raw sores have to be the most painful things I have experienced with Elizabeth. From here we went to an Epilepsy diagnosis. While we had answers, a course of action for treatment there still was no relief for Elizabeth. This is when you can choose to take one of two directions, you pull on your big girl boots and say I can do this or allow one look in that rear view mirror and lose yourself to the past. Here’s my confession … I looked in the rear view mirror.
Elizabeth was up to no less than 3 doctor appointments a week between home and Little Rock by this point. I was so tired, God knew this … mainly because I had been telling Him every minute of every day. 24 hour days were the norm for Elizabeth and I and all the while I was living my life focused on that damn mirror that I couldn’t take my eyes off of. Every obstacle I had faced as far back as 4 years ago was presenting itself and I was having no problem living through it all over again. This my friends is no way to live, your past is just that. There are things in life that while very unfair and at times nothing you could have done differently would change the outcome, you must walk down that path for a reason. A lesson learned, a need to bring you back to God because you have strayed, an opportunity to be there for someone else struggling … whatever the reason, and while you may never understand why you must trust the journey.
It was after one of these appointments that I noticed just a slight swelling around Elizabeth’s internal pump. This pump is there to help administer medication directly into her spine to help get the greatest benefit from the medicine itself. She has had the pump for I would guess around 8 years and never once have we had a problem with it. A phone call to the Neuro team found Elizabeth and I once again back in the emergency room. This would make my 4th visit in one month to the hospital ER. The visit before this one we can thank Alex for! Just a minor head wound, from a trampoline accident ….
(For the record I don’t own a trampoline, he told the hospital staff he took down a bear and as we sat waiting for the staples I was asked by several doctors and nurses how Elizabeth was doing … this is where you begin to consider maybe visiting one of your other local hospital emergency rooms!)
I already knew we were headed to LR, only I didn’t know just how very serious this situation had become in such a short amount of time, nor did I know that this one incident would be blamed for the summer we were so ready to put behind us. As the ambulance pulled away from the ER bay and my hazard lights came on I looked in the rear view mirror only to see an empty car seat where Elizabeth should have been. I didn’t look back again that entire trip to Children’s. I followed the ambulance closely and watched the movement inside as they worked on Elizabeth. The Neuro team was waiting for us when we arrived, their assessment was immediate and within minutes she was prepped for surgery. It was already dark, the hospital was quieting down for the evening and there I stood, by myself watching as Elizabeth was rolled away through those doors I have seen too many times.
The waiting room was dark, quiet … unlike any other time I spent there. I was the only one there which meant Elizabeth was the only one in surgery. It was one of those moments you never wish for, you pray that you never have to endure because it means something is terribly wrong. The next 4 hours I spent alone, scared and very angry at my rear view mirror. Nurses would come and go and report how Elizabeth was doing … as always she was quite the fighter and proved to be a great patient in the operating room. Around midnight the doctor emerged and explained that the tubing that goes from the pump to Elizabeth’s spine had worn out over time, something not uncommon but dangerous. Medicine had been leaking into Elizabeth’s abdomen for months and most recently when we turned the pump up to administer greater doses is when it began to pool and swell. This particular medication is used to help control Elizabeth’s spasticity and pain so for what we now believe for 3 months Elizabeth was not getting any of that. This medication is also a narcotic so withdrawal symptoms are common.
Increased tone, check … irritability, check … pain, check … insomnia, check … seizures, check … and by the time we had reached Children’s Elizabeth was slipping into a coma like state, unaware of her surroundings and unable to recognize those she knew. No one did anything wrong, there was nothing we could have done differently to change things. It is simply the life of a special needs child who can not tell you what is wrong. Over the last month since surgery, Elizabeth has slowly been improving. There are still tough days but nothing like what we endured this summer. Sleep seems to come more easily, the pressure sores have healed since she is now sleeping in her bed, seizures are minimal and controllable. I know that this is just one hurdle we have cleared, as long and hard as it was we did make it. There is a lifetime of obstacles that we will face with Elizabeth, that another may come tomorrow or not again for months, this is life with Elizabeth. So today, the first day of fall … a new season and a new beginning. An opportunity to realize that the rear view mirror is there only to glance back, to remember that yes, there are things behind us but we lived through them and we are okay … really we are okay. Teachable moments of how to live for today, to be so appreciative for the sunrise, just like the one I have come to live for outside Elizabeth’s hospital room, and another day.