Tuesday, August 16, 2011

Dreaming a New Dream

I haven’t done any posts for the blog since the first part of July. There have been lots of things happening but some of the emotions I am feeling are not ones I really want to put on paper. I have always been the optimist but I feel that happy outlook seeping out of every pore and I can’t stop the exodus. The miracles have been amazing and are still burning in our hearts and minds but reality and enduring are daunting tasks. These feelings are temporary for sure and eventually they will pass. I know that I am not alone in those feelings; most people struggle with hard things. That doesn’t help me either. I just feel bad for anyone walking a difficult road.

Even for those people who have children that have survived a Traumatic Brain Injury, their journey though similar to ours, it is still different. Each family and person has their own way of coping and different support groups with differing abilities. The significance and the amount of deficit in the survivor are also different. The ability to cope emotionally, mentally and financially with the newness and changes in the situation differs as well. The family and the survivor are hugely affected by what stage of life they are in. The NEW life has to be negotiated and adapted to.

Each person has to release the relationship they once had with Maddi and begin with no expectation for Maddi to be the person who never returned from the hospital. Our family dynamics have been clearly interrupted and have to be redefined. All of our kids are amazing but they are also more grown than not, it is hard to retrain 20 years of habit.

Change is hard to accept for everyone and as we go through this journey usually when we need understanding, it is most allusive. It isn’t personal but it is still one more thing to mourn. I have been in the situation as one found speechless when talking to someone who is mourning a loved one. Now, I have the perspective from the other side even though technically there isn’t a headstone with flowers to visit. I don’t know what to say either. Words are completely inadequate.

I think that the lack of words is partly why I haven’t written besides the fact that from the outside all looks well and really by comparison to what could have been it is a Miracle. That doesn’t make the present any easier to navigate. I find myself not wanting to say a word because I know that nothing I say will help people understand nor will it make any kind of difference. Potentially, it could look like ingratitude which is so far from the truth.

Much of what Maddi is learning and going through right now is too personal to put into this blog. It was easy when she was at the hospital because the people she interacted with had a deep understanding of Traumatic Brain Injury. Now she is surrounded by people who have never heard the term, much less understand it and the ramifications of a severe brain injury, are too extensive to explain to every person we meet.

It is difficult to educate without it being perceived as protective, making excuses or sheltering her. We really try to limit how much the brain injury has altered our life and we resist at all costs the urge to use Maddi’s brain injury as an excuse. Creating a feeling of normal is our objective but it isn’t the “normal” people expect.

  • “She looks so normal.” Maybe to someone who doesn’t remember or someone who wasn’t intimate with the light behind her eyes that is no longer there.
  • “You would never know she was hurt so badly.” Maybe for someone who spends only an hour or two with her but for those of us living with her the difference and difficulties are drastic.
  • “She will have to get used to it sometime.” I agree, but that happens in layers, stages and some things you never get used to, you have to work around.
  • “Lots of kids struggle with……” Agreed, but the discrepancy between the top 5% and needing one on one instruction has no comparison to never knowing any different.

Not that the frustration with school changes but it is more the remembering how it used to be. It is like going from a 4G phone with a data plan/ WIFI and unlimited texting to an ancient phone from the turn of the century that can barely find a signal.

Traumatic Brain Injury survivors are the walking wounded and that is permanent. We are conditioned as a species to make decisions based on what we see and we aren’t privileged to “see” most of what is actually going on. I believe that is the biggest reason we are told not to judge! It doesn’t matter how many things you have been through or learned about or studied; every person responds differently to things based on their internal make up and the environment they are navigating.

I have always tried (not always successful) to reserve judgment but this situation has removed any and all desire to suppose I know anything about what is going on inside another person’s head and heart or what they should or should not be doing. Most people have more on their “plate” than they can handle without all the misunderstandings and judgments.

We are totally blessed to have Maddi with us, but death is not the only thing that brings anguish. Watching your children struggle is not on the top 100 preferred activities. It is a daily activity for us. Walking with Maddi through her continued recovery is simply bittersweet. I relish her voice, each hug, smile, sparkle in her eye and her achievements, while at the same time mourn and feel the sadness with her as she comes upon each realization, difficult and deficit, as she gains a better understanding about what this means for her in her life now and in the future.

It is too soon to determine the complete recovery outcome. She has many, many years to figure it out and learn to work around her issues. The future looks bright but it feels so far away. We know that in the end all will be for our good and that she will find her place with her new brain. The wavering optimism isn’t saying that things won’t work out, just that the space and time between now and then is bigger than we are. It is all about:

Dreaming a New Dream