We attended our first big family party since Maddi came home from the hospital. I know that probably sounds crazy since we have been home for almost three months. With the weather and all of the adjustments we were just waiting for the right time.
Easter Sunday provided us the opportunity and the chaos. Those of you who know my husband’s family are aware of the chaos and noise that goes on at one of their parties. With more than 50 people and half of them grandchildren there was lots of potential. We ventured anyway. I was dreading this event not because I didn’t want to see family or didn’t want to navigate the noise and chaos but because I knew that this would be a time that Maddi would come face to face with who she was before the accident and who she is now. The change would be undeniable and I knew that it would create pain and would start another dimension of this journey.
For those family members reading this blog, this has nothing to do with anyone personally or any specific event. It was and is just an inevitable part of this healing. Those times where things should feel the most familiar often times feel the most unreal, the most un-normal.
Honestly, my dread was about my own cowardice. I didn’t want to begin that part of the journey. Maddi has such a great attitude about all of the hard work and the changes she has to adapt to that I just didn’t want to see the recognition set in.
For a person with limited time spent with Maddi they see only the most obvious changes. The deepest and most difficult changes are only apparent to those closest to her. Knowing Maddi as well as I do, I knew that this party would be difficult. There would be no denying the differences.
Things were fine at first but eventually that moment happened. She began to realize how different she felt and how everyone else is still the same. For everyone else it was “same stuff, different day” for Maddi it was “same stuff, different brain”. The realization of all that she has been through and continues to work through every day became a heavy load.
This is a real part of this journey. I think all of this is a lot for a 14 year old to process through. I dare say that many of us might not handle it as well as she has. We can’t definitively pinpoint the severed axons and damaged cells and determine their neurological function and say, “here you go, you just can’t…….” We just have to work like there will be a full recovery and accept what doesn’t come. This takes time and we won’t know for sure for a long time yet.
We spent some time walking the dog, talking and crying on the grass. I spent my time with her listening as she told me her deepest fears and most painful realizations: feelings of not being understood, loss, frustration, not belonging, not fitting in, feeling out of phase, fear of being injured again, longing for the past and wishing to be Maddi 1.0, all were part of the emotional storm she felt that day.
“She looks fine, so she must be fine,” Is the furthest thing from the truth.
I am just so glad she is willing to tell me how she is feeling. That is so much better than keeping it buried deep inside. For me as the mom listening without any way to fix it was a particularly difficult place to be in. I wish with everything inside me to be able to take this burden from her. My heart was breaking for her.
I cried with her and told her I understood and I do, more than she can ever comprehend until she has her own little girl. Letting her tell how she felt without any judgment or taking it personal was critical because the harder job still had to be done; helping her look into the future and not letting this one day alter her optimism and hope.
My role was to focus her sites on the long term picture instead of the moment. Everyone has hard stuff! We all get to choose how we will approach life’s disappointments. With a brain injury, and I would assert in life in general, it is important to carefully pay attention to the pathways we build. This is a deliberate effort, optimism doesn’t happen accidently, it is chosen. I have said it before, what you focus on expands.
I know to some it may seem that we are dragging this experience out forever. Unless you understand Brain Injury, I can understand why you might think that. With Maddi’s type of injury she will continue to heal and get better for a long time.
The first year has the most rapid growth but she can still be physically healing for up to 5 years. We hope that in that time her deficits will be completely accommodated and she will have adapted so well that this time will seem like a bad dream. We hope that all of her original goals and dreams will be attainable just delayed a little bit as she recovers.
The original purpose of this blog was to give information to those who love Maddi. The purpose has now changed to documenting this journey all in one place. Some of the posts would probably be better suited for a personal journal but we believe that the truth is so much better than some fabrication.
Luckily for the reader, when those torrential emotional moments come we generally aren’t writing. Some days just aren’t that inspiring, some days are horrific and difficult but usually by the time we get around to writing we are feeling better and our perspective, through lots of hard work, has shifted again to happiness. If we are telling this story we intend to tell the whole story!
We won’t always post on this blog, eventually I will continue writing on our family blog and Maddi’s adventures will blend in with the rest of my remarkable kids, just as they did before. Maddisized will fade into the background of our lives but our lives will always be divided between before and after.
Right now we are still in the early healing stages of her injury, even though for many of you, having the “crisis” over creates the perception is that she is done healing. That isn’t so, each stage has different issues; physical, emotional and mental. Over time her Traumatic Brain Injury will take a second chair to the new life she builds, but it will always be part of Maddi 2.0.
We are forever altered by this experience. We have felt the hand of God in our lives, once touched, we are forever changed. We have tested our own inner core to the breaking point and still we move forward carried by; Faith, Hope, the Power of Prayer and the Spirit as our guide, grateful for each new day we have together as a family.