Tender Mercies

17 March 2011
Tender Mercies

As I have been compiling information for different entities that are working with Maddi, I have found that I have forgotten or didn’t quite truly understand some little things that happened at the hospital. All of these forgotten or misunderstood things I am putting in the tender mercies category.

Being reminded has given me an even deeper appreciation of the miracle that has blessed our family. So I thought I would share them with you. First, because this is a huge miracle and second because it might make you laugh at my expense and everyone needs a good laugh!

The biggest reminder was found while reading her discharge papers. The list of diagnosis was pretty extensive. The thing that hit me the hardest was when I saw Maddi’s Glasgow Coma Scale score, think Apgar score for babies. This score tells you how profound the coma is and is a good indicator of the likely hood of recovery. This score goes from 3 to 15. To quote the definitions; 3 is deep coma or death, 15 is fully awake. Maddi was a 4-5 on that scale.

I don’t know if they didn’t tell me or if I just shut it out or if they told John when he arrived at the hospital without me, but I don’t remember being told anything lower than a 6. I saw that number on her paperwork and was a little taken back. I am so glad that I didn’t have that understanding then. Six holds so much more hope than a three. I believe that God knew what I needed in those moments.

The other conversation that was replayed in my mind was when they gave us the worst case talk. I have mentioned that conversation before but left out the details. This tender mercy is actually laughable. When it finally hit me and I realized my vocabulary misappropriation, I actually laughed out loud. I couldn’t believe that I didn’t get it. I count it as one of the best of God’s tender mercies given to me during this time.

Here is the setting for the conversation, (I want you to have the same laugh out loud moment). We are in the PICU (Pediatric Intensive Care Unit) and the doctors are going through all of Maddi’s scans and her many injuries. This is serious stuff folks. I hope none of those reading this ever have this experience. The doctor is so kindly preparing us for Maddi to never wake, speak, walk or move again ever. He told us that her injuries were at the CELLULAR level.

My reaction though not spoken aloud was,
“Cellular means small, that isn’t so bad. Healing a cell has to be better than the rest of it.”

I told you I am that annoying optimist! I must have had my own version of a Traumatic Brain Injury because what the doctor was trying to say was the opposite of what I understood. I am a relatively intelligent person but I didn’t grasp the magnitude of that type of injury.

I understood global, nerve damage, motor control, speech center, cognitive function, shearing, hematoma, cranial pressure and many other terms they used to describe her injuries but I missed the meaning of a basic biology term. So much for passing the basic life sciences competency test. I can tell you how cells grow, what they need for life and how they are the building blocks of our bodies but in regards to Maddi’s injury it seemed the opposite of severe.

Her injuries were at the most basic part of her brain. You can’t get much more basic than where everything begins. In terms of understanding, here is how it works in the brain; you have the cells, then you have the pathways that send messages to the nerves that allow the brain to control everything you do. Her injuries were at those cells where everything starts.

How grateful I am that I didn’t get that picture in 3D at the time. I know that the brain is a mysterious thing and we know and can predict very little but in this area there wasn’t much guessing going on. The doctors were good about letting us know that they couldn’t make any promises but they told us what they did know and what they have typically seen in her situation. The prognosis wasn't very promising at that point.

I want to say I don’t know where I got my outlook and my hope but I do! My Father in Heaven took notice of me in my hour of need and provided for me! It didn’t come in a feeling, a burning or a still small voice. It came in my inability to grasp the simple concept of CELLULAR. For that I am so grateful. I can’t say how that would have affected the outcome but I didn’t spend much time worrying about it.

One thing I kept telling Maddi was, “God created and wired your brain the first time, he can rewire or rebuild it again.” Of that I had no doubt! I knew that he could do it, I just wasn’t sure if he would do it. I wanted to be sure I aligned myself with HIS will not mine and I wanted to endure it WELL not just get through it. I wanted to be able to find joy in this journey as difficult as it was and still is.

Maddi is still recovering. There is so much work to do, most of which has to do with patience and acceptance instead of brute force or deep concentration. Learning to adjust to new learning styles and difficulties is hard work. Probably the biggest thing we are working on is Executive Functioning. Executive Functioning is problem solving, reasoning, decisions, predicting and inferences. For those of you who knew Maddi 1.0 recognize that she was highly developed and had deep interest in these areas before. The difficulty is not only completing these tasks but REMEMBERING how it was before and understanding the difference inside her head.

Maddi can develop these skills and she will but she needs guidance in recovering those abilities. Those skills won’t just miraculously emerge. It takes hours and hours to help her find those pathways just like helping her find her legs, arms and voice. It requires waiting long enough, correct questioning and allowing her to slowly take it one step at a time and make those decisions. However,if you look at long term and lifelong happiness these are probably the most critical skills to develop. I am not really concerned about curriculum, facts and dates as much as I am about these skills.

Together we work hard, take lots of cognitive breaks and then start again. My perspective is that people learn throughout their lives so regardless of age or how long it takes and this is no different. So,we will continue to work towards effective Executive Functioning without worring about time or percieved opportunites passing her by.

She is doing absolutely amazing! I can’t complain in the least. Life is busy but good! One day at a time, one skill at a time. It is about accepting what is but also working towards the best outcome. I am thrilled with her progress and I understand that it is all about time now. We can’t rush it or push it.

The parallels to our everyday lives are very apparent to me.
1. Take it one step at a time.
2. Be Grateful for every moment, skill, memory and bond that you build.

When the Lord says, “line upon, line, precept upon precept” I know what He means. “Through small and simple things, great things are brought to pass.” I believe this too!

I have seen it with my own eyes, five minutes at a time can be the difference between mobility and disability. I believe that those same five minutes spread out throughout the day can be used to develop those Executive Function pathways as well. Time will tell, but I work for no regrets regardless of the outcome, with the inspiration of the Lord as my guide.