Baby Steps

Life as a TBI survivor is interesting. On the inside you feel normal, but on the outside people see you doing things that aren't quite average. This effects every aspect of life for a TBI survivor. After dealing with a brain injury for years, sometimes I just want it to go away. But it can't. And it sticks its fingers in every part of my life. My work is affected, my spirituality is affected, my relationships are affected. Everything! You would think after six years I'd be used to it by now, but the truth is I don't think I'll ever be quite used to it.

Because of my brain injury, disappointments are bigger, love runs deeper, and anger burns hotter. This means that when my hours are cut at work, I'm devastated. But it also means that when I publish my first story for others to read, the excited is larger than life and lasts a long time. My emotions are just bigger. That's the truth. Sometimes it isn't very fun, but other times its worth it. Like when I'm angry at my boyfriend for taking me on a really hard hike so I swear at him. That's not so fun. But when we get to the top of the hike, and he asks me to marry him, and I wear a smile that could light up Las Vegas for months. That's worth it.

Anyway, I thought I would give you all a little update. I know I haven't been good about posting, but that's going to change.

And yes, you read that right, I published my first story through Kindle Direct Publishing. It's called Since the Turn of a Page. (I use a pen name so it won't be under Maddi or Maddison or with the last name Sanders)

Maddi out.

Atonement

1 February 2012

I wrote this post in February but it has been lost in the cue of other posts I have written but never put on the blog. I don’t know why but I feel compelled to post it now……………….

Any time tragedy strikes those outside the immediate impact marvel at how the family or people can manage to get through the terrible tragedy. Often you hear things like, “I could never handle that.” or “You are so strong.” I wanted to give an insider’s view to this situation. We aren’t any stronger than anyone else, we don’t have any great secret that allows us to gather ourselves together to face the next day of trauma. The only thing that is different between those in it and those not is the…. NEED. All of the emotions that people think they will experience during a tragedy or a traumatic event, we do experience. It is just required that we continue to get out of bed each day. It isn’t internal strength but necessity. If you were in that situation you would find a way to move forward each day too!

Those Mormon Pioneers that are so revered for their courage, perseverance and strength weren’t so different from us. They stayed on the trail because there was nowhere else to go. To return and cross over the river again meant that they would certainly come face to face with a mob wanting to kill them. That mob provided the fuel to continue putting their “shoulder to the wheel”. Even those Saints that crossed the plains without the real threat of a mob still were homeless anyway. They had left their homes, families and anything that mattered to them in their country of origin. Necessity pushed their handcarts. The difference was that on the trail there was HOPE that things could and would be better.

I can’t begin to explain how the Spirit has walked with us giving us that kind of HOPE. If you have read this blog you know that I believe without reservation that God is real and that his Son gave the ultimate sacrifice so that I could learn and grow from my mistakes, experiences, sorrows and joys. I also believe that God and his Son are distinctly separate beings and with the Holy Ghost the three of them work together in perfect harmony for our individual and eternal good.

The Savior makes it REAL and possible to evolve and remove those rough edges in our personalities and those sharp edges that life requires we experience. This journey with Brain Injury is one of those sharp edges. The comfort we received was physical, tangible and outside of ourselves, an unseen power; The Atonement. The Atonement isn’t just for “sinners” but really aren’t we all in that category? I don’t know anyone who handles things perfectly every time. We all make mistakes and sometimes they can be big ones with long reaching consequences that can’t be “fixed” only learned from.

I believe the Atonement is for the express purpose to allow us to make mistakes without falling into that deep dark hole of regret and self- loathing that keeps us chained. It provides us a way to move forward when we are stuck and our own strength is not enough for release. It allows us to find relief from the burdens thrust upon us by other people and those we create for ourselves though errors in judgment, human frailty, pride and just plain stupidity.

I believe that God knew that our ability to choose perfectly would be hindered in this mortal place and in his wisdom, grace and mercy he provided the Atonement so we could learn through our own experiences. The Savior takes on all our sorrows regardless of the source and provides us clarity and hope to move forward. That is how we could persevere.

HOPE provides the fuel to get through the most horrific of days and still manage to get up and try again. Hope provides a balm when you don’t have the strength to do anything else. Hope and Faith are interconnected and I can’t begin to be an expert on this but I know that those Pioneers probably had days where they were grumbling in their hearts, feeling weak or asking all those “why me” questions, wishing things were different.

I think it is unfair to compare our internal spiritual journey to the outward expressions of someone else. I think it sets us up for feelings of unworthiness and disappointment if we expect ourselves to never question, wonder, worry, doubt or feel the weight and sorrows of life.

Faith is the definition of putting those issues to rest, though not resolved and believing anyway.

So, though I do assert that necessity provides the strength to push forward; FAITH and HOPE make it possible to maintain a positive outlook in the darkest time. It is the difference between just getting through it and being able to say “Thy Will, not mine, be done,” when all you want to do is beg and plead.

FAITH and HOPE provide the peace that says you can make it no matter how hard it gets.

The Atonement provides us a way to look at others compassionately knowing that we have NO IDEA what life is like for them and the struggles they are wrestling with because we all struggle with something. We can forgive a deep hurt that shakes you to your foundation. We can find mercy for those who fail us when we need it most, including ourselves.

I have always been a spiritually minded sort but this last life lesson has clarified so specifically the role of the Atonement in my everyday life, not just for those times I say terrible “Grandma words” or when I hurt others without any intention or in anger, or if I break one of the Big 10.

I have the opportunity to sit in council with my Savior and give an accounting of my day, good and bad, and seek for his wisdom to provide a plan to improve, learn to accept my own limitations and learn to love deeper and serve more. Ultimately, it is daily divine therapy that helps me learn and practice being more like him and come closer to who I am meant to be. I can try again!

I have a deep understanding what it feels like to be at the mercy of my Savior’s compassion without any claim or expectation of relief or a miracle. I have never before experienced the sweet relief of a burden the way I did during that stressful time. It didn’t make the problems go away but it was a literal lifting of my heart to part the dark clouds circling with the debilitating storm on the horizon.

I feel such indebtedness to the Lord for reaching out to me in all my imperfectness and loving me in spite of it all. The words of several hymns surge through my mind when I contemplate the perfectness of the Atonement and how truly blessed I feel. I am not quite ready to say I would go through it again to learn this stuff but I am so grateful for these beautiful truths.

I Stand All Amazed at the Love Jesus Offers ME….Confused at the grace that so FULLY he proffers me.

I Need Thee Every Hour…Teach me thy will…thy rich promises in me fulfill.

Come Thou Fount of Every Blessing….Streams of mercy, never ceasing.

Praise the Mount, I’m fixed upon it! Mount of thy redeeming love!

2011 vs. 2012

I thought I would do a post comparing last year to this year.

March 2011

• Struggling through two classes.
• 3^rd-4th^th grade math at home
• Struggled to organize a written assignment.
• 2 hour fatigue threshold
• Difficulty following a conversation.
• Age appropriate for an hour or two.

March 2012

• Algebra I
• Better conversation skills
• 100% in 9^th grade English
• Writing is hugely improved
• School from 10 am- 2:45pm , 4 classes
• Riding the bus home from school
• Age appropriate except when fatigued or sick.

It wasn’t enough just to have Maddi back in school struggling with huge holes in her learning. We wanted to make sure that she regained all of her past knowledge and skills. It has taken a lot of hard work and time to go through all of the curriculum but leaving holes in her learning would just set her up to fail. We want her to return to school full time confident and armed with the skills and tools to learn.

Fatigue is still an issue but her stamina is improving. This is a slow process. To give you an idea of how this works think of how you work with a toddler who has just learned to walk. Just because he or she is walking well doesn’t mean that you throw out the stroller and set out for a 3 mile hike. Most people bring the stroller a long for a while until the toddler refuses to use it for an entire day long outing. Fatigue for Maddi is all about providing very calculated exposure to stretch her abilities while being able to accept when things are not a good fit for her.

These days the pasty white fatigue face is seen mostly at night and after a long involved day. She is able to hang out with friends for hours on end and, for the most part, seems pretty much an average 14 year old. Although,she does much better with a small group rather than the chaos of huge numbers.

I have hesitated to put much of this journey on the blog because there are some truly cruel people in this world that take a lot of pleasure in using this kind of information in very unkind ways. People are quick to judge and decide what we “should” do without any of the context and experience that this particular journey provides.

Traumatic Brain Injury is a game changer!

I am truly grateful for the people (you know who you are!) who have been there every step of the way. These people have listened to our struggles, helped us problem solve, and given encouragement when we couldn’t find it ourselves. They helped us be patient in the newness and they helped us find a kind gentle place to be where the differences were not an issue.

The transition our family has been through has been huge! The shifts in thought, priorities and perspectives have been difficult for each of us personally and as a collective. Traumatic Brain Injury doesn’t go away and the affect doesn’t stop with Maddi.

Our family is still in a serious stage of change,not only from the accident but the stage of life we are at. We, as parents want to circle the wagons to try and rebuild at the exact time most of our children are ready to leave the nest. The combination has been an interesting ride!

Maddi’s memory is amazing considering the severity of her injury but she has needed to rebuild all of those relationships around her, with siblings, friends and other family members. The past memories are there but they don’t translate into “now” memories. It is like her new brain has to verify the authenticity of those memories and relationships with new experiences. I don’t really understand all the reason why but you can imagine the difficulty of that journey in a family.

We have been extremely deliberate about how time is spent and we have been careful to be sure the environment is conducive for POSITIVE interactions. Traumatic Brain Injury often breeds a negative outlook on life, anger, helplessness and depression. Keeping things positive and slowly building the foundation of learning and relationships helps keep the negativity out of her slowly recovering mind.

When Maddi wrote the words in her song; “Having to relearn everything is hard and kind of frustrating.” That was a foreshadowing of her journey. She not only had to relearn academic and functional skills but…………

• Emotional aptitude and social and familial structures.
• Conflict resolution
• The art of negotiation and seeing from an outside perspective
• To protect herself from the insecurity and meanness found in Jr. High and High School without becoming bitter
• To gauge if a person is trustworthy and a true friend without losing her belief in the goodness inside each person
• To deal with disappointments and manipulation and still find a way to take risks and trust that the world is good
• To delay gratification and that life is about being content with what IS….. Not what should be.

That is a lot to learn at a time when the struggles are invisible and the expectation is that we should just move on. Time is required and having the best long term out come is the target.

Our goal for Maddi is that she will have the skills, confidence and ability to dictate her own life and choose what makes her happy and surround herself with people who love and accept her without reservation regardless of the residual effects of her Traumatic Brain Injury.

Not only has Maddi worked hard but here is a shout to the rest of the team….. brothers, sister, close friends and family. THANKS! It has not been easy and you all need some recognition for your dedications and patience too! You are EXTRAORDINARY, it has been a TEAM EFFORT!

Are we finished yet….No, but it is amazing to see what can happen in a year!

Smiling and Happiness

The funny thing about a Traumatic Brain Injury (at least Maddi’s) is that many of the things that you used to do by default you have to consciously focus on and remember to do. Early on facial expressions had to be taught, practiced and reviewed. There are so many subconscious subroutines running in the background of our minds that with Traumatic Brain Injury have to be relearned. In the process of this work I came up with a quote that I have to say is pretty good! I don’t know if it is entirely original because I do read a lot but I thought I would share.

“The expression you use most often when you are young will be etched in the lines of your face when you are old.”

Life leaves its mark and the only thing we can control is how we react or respond to what is going on. Sometimes it is hard to smile when the clouds completely hide the sun from view, but knowing the sun is behind the scenes helps me to be patient while the storms resolve.

I have felt great moments of frustration and even anger for the resulting chaos after the accident. I have tried to stay positive because negativity never helps. Some days I am better at this than others. I want the background music of my life to be happy and peaceful but some days the heavy, grating, electric guitar that I despise takes over.

When the need arises with my kids you will hear me say; “Let’s bicker and fight about it because it always makes things better.” laced in sarcasm. In this situation I amend that statement to; gripe and complain. Nothing productive ever comes from idle complaining.

I have to be careful not to focus too much on the things that have been forever changed. Knowing that life is about the journey not a destination helps keep thing in perspective. Change is the rule not the exception.

Appreciation and Gratitude helps to balance the scale. Stacking up all your troubles and sorrows like metal weights on an old fashioned scale with one side being labeled as heartache and sorrow and the other blessings and joy, sometimes the sorrow tray hits bottom and things feel heavy. If you carefully and purposefully lay out each blessing, tender mercy, kindness and love on the other side, I often find that instead of balancing out, the scale leans in the joy direction instead.

I hope that the lines on my face will show my constant effort to focus on the happiness and joys of life. Time will tell.

Unfinished Business

I know this is crazy but when I see or hear about the kids in my class during the 2010-2011 school year I have this weird empty feeling  like I forgot something important. I have always had this physical response to unfinished business which kindly keeps me from procrastinating but in this situation it is frustrating.

I was going through photos and came upon one of the Halloween party with my class. Seeing their faces left me longing to have seen the empty spaces where teeth should have been and longing to better know the cute little personalities that I expected to spend a year with. It reminded me of the journey of reading, math and writing that I didn’t get to guide them on. The fun new art projects I had planned still sitting in the cue waiting completion. The fun songs that we would sing ring in my mind, and my heart aches a little bit.

I love what I am doing and I am content. I know I was and I am exactly where I should be, but I still think of each of those sweet kids and I feel kind of robbed.

Crazy I know.

Sisters

As I was desperately and failingly trying to fade into the beautiful, simplicity of sleep, pictures of friends and family visiting at the hospital kept flooding over me; one after another,(think slide show). It was like a flood gate bursting. Finally, here I am, an hour later to try to put those pictures into words. If I were to detail each of those snippets of time in one blog post, I am afraid the length would be a disadvantage. So, I decided to share the details of my memories just with sisters. Three specific moments that kept coming back to me tonight.

Brooke and Maddi

Brooke and Maddi are about as different as you can get in personality but in many ways they are kindred in their hearts. Growing up they had their usual sister rivalries, fights, irritation and disagreements and I am sure there will be more. When Maddi regained the use of her voice, one of the first words she said was “Brook-ee”. I can’t say for sure because I wasn’t inside Maddi’s head but the fact that she spent the huge effort to find the word, make the sounds and repeatedly say “Brook-ee” indicated a deep love for her sister during a time that Maddi was unable to do or say anything it is a true measure of sisterly love.

Brooke is the quiet type; she keeps to herself mostly, unless she is talking about History, Art or Historical Sewing. She uses her daily allotment of words in beautiful writing. Brooke is a little quirky, in High School, she liked to wear mismatch socks and shoes, her favorite pair were Converse with one yellow and one black shoe. I don’t think during school, I ever saw her wear a different pair of shoes except at church and only at my insistence. She even wore that pair to her High School Graduation. She wore the heels during the ceremony at my persistent nagging but promptly put on the Converse afterward.

I can’t recall how Brooke came to know that we needed high top shoes for Maddi to help her learn to walk again but on Brooke’s next visit to the hospital, the reciprocal mismatched set of Converse with the familiar black and yellow were dangling from her two fingers. She had a smug little smile on her face and oh how I had missed seeing that smile! As she placed the shoes on the end of Maddi’s bed I saw on each toe had the corresponding directional words; left and right, written in black letters to help Maddi gain some independence in getting her shoes on the corresponding feet. This gift was such a tender expression between sisters.

Brooke spent most of her time at the hospital coloring with Maddi. Maddi, of course had very little fine motor stamina but Brooke would wield the crayons with precision allowing Maddi to color what she could. Maddi’s walls were lined with the product of the quiet, patient love of a sister adding color to a lifeless and less than cheerful place.

I was overwhelmed at the magnitude of these gifts and the deep meaning buried in each deep colorful stroke and in the soles of those mismatched shoes. Watching Maddi with the “Bumble” given by Brooke, in her arms, grasping tightly to the hand of her older sister for balance, walking slowly and deliberately, hand in hand out to the car with occasional flash of yellow reminded me of the amazing power in the sister bond! I may even have dropped a tear or two, for sure my eyes were brimming and my throat was tight with stifled but still burning emotions.

Donna

I only have one sister and she is amazing! She and I are very much like Maddi and Brooke, so different but so much the same. Donna came often to the hospital to visit and she sat with Maddi when I had to leave. I am so grateful for her. Each time she came she brought me hope and reality. I can let her into the deepest part of my soul and I know it is safe with her. At the hospital she broke up my days, listened my rambling and helped drive out the isolation I felt.

One particular day, sitting across black metal tables that were better suited for a sunny day with flip flops and bronzed skin, I was introduced to “Sweet Cream” and “Cake Batter” ice cream with candy mixed in at Cold Stone Creamery. It was a little thing and I don’t have any idea what we talked about or the topics that we covered but as the memory came flooding back to me this evening I was struck with how much that meant to me!

Christmas Eve, Donna brought her family to South Davis Hospital and spent that evening with us there. I was living this nightmare and I didn’t want to be there on Christmas Eve and they came with laughter, conversation and gifts and made a party in a sterile, dreary room. Fourteen bodies including Grandma and Grandpa crammed into those same four walls and with the inside jokes that only years can provide I felt that Christmas wasn’t lost. I can’t even begin to explain how much I needed that!

Donna was there when I had to muster up the courage to walk into a room full of 14 experts and staff from South Davis Hospital. She gave me strength to fight that battle for Maddi when conflict resolution makes me want to vomit. She helped me take Maddi out to Chili’s in Salt Lake to save my sanity. It was seriously like a slide show as the memories kept flashing through my mind. All I can say is; Thanks to a loving God, for giving me a sister to share my life with, and thanks Donna for knowing what I needed at a time, when I wasn’t able ask.

Julie

Julie isn’t my sister in the biological sense but by marriage. DNA doesn’t matter to my heart. Julie came to the hospital every week with her fun kids, they were a great distraction. She brought me understanding and support. We didn’t do anything grand, all we did was talk and play with the kids but it was like bringing the sunshine indoors. It was at Julie’s voice that Maddi first confirm-ably turned her head. I was pretty sure she was turning her head to voice before but the “Julie Head Turn” was undeniable. I can’t remember how many times Julie sat with Maddi in the evenings but, just like with anyone who rendered that simple act of service, it was such a comfort to know that Maddi wasn’t alone. My heart was so torn between Salt Lake City and Logan, not being able to be there for my other kids during a time that was traumatic and extremely difficult left me feeling quite frustrated and helpless. That experience was a journey in its own right, not to mention what was happening at the hospital.

It was after one of Julie’s visits with the kids that Maddi, with her face turned to the wall, attempted a smile at South Davis Hospital. I had to roll her over to get a better view of her face. It didn't work out quite how she had hoped but I was one happy mamma!

One specific day, Julie listened to my, first spoken, heartache over leaving my teenagers at home in Logan. Having my loved ones stretched across 100 miles had taken its toll. I was so busy trying to keep all of the talk around Maddi positive that I hadn’t let myself release my fears and heartaches. Sitting with Julie in the café with its familiar setting, I dropped my first tears outside of my very private sobbing. Those of you who know me will understand the significance. I needed the release and the validation that she was able to give and I knew that she really meant it. She reminded me of what great kids I have and how strong and capable they are. Not that I had any doubts but that particular day I needed to hear it from someone else. She may not remember but my gratitude for that kindness is indescribable. I reflected back to her assurances many times over the following weeks anytime I felt conflicted. Thanks Julie for knowing; just what to say, when to say it and taking the time to be there.

These are just a sampling of the memories that washed over me tonight. It will take me many blog posts to document all of those moments but the behind the scene moments need to be written. Over and over again during this journey, people have been sent to me at just the right moment. It gives credibility and validity in my belief that the Lord knows us deeply and personally. He is aware of our deepest heartaches, longings and needs. He is ready and able to bless us in specifics even when we can’t ask and he provides those blessings in the exact way that we need it.

How has your sister blessed your life? 

Years End

This blog has encapsulated and documented a huge portion of this journey and has been such a blessing.  Especially, as Maddi has tried to piece together the jumbled mess of memories that are in her brain from the early days.  Much of this story has remained private and there are so many sacred experiences that I haven’t been able to share. This journey has changed us forever in so many ways, we hope and feel for the better.

We have been blessed beyond our ability to even hope for.  I hope that in some way your life has been touched by following our story. I would love to hear how you have been blessed and the miracles you have been given.

I intended this post to be the blogs end, but as I have let that idea simmer I have felt a pulling to continue. I love to reflect with gratitude on the blessings and the miracles but I actually don’t spend much time thinking about the details of the past because it isn’t all that helpful in the NOW. But every so often a memory wakes me from my sleep and I find myself again in the storytelling mode.

In this defining time we have learned:

• God knows and loves each of us individually not just as a collective whole.
• God hears and answers all prayers, even the ones you are afraid to ask for.
• God is aware of our struggles and know exactly how to provide for us, emotionally, spiritually and physically.
• We are stronger than we think and things are never as bad as we fear them to be and even if they are, we will make it through it.

 

 

Christmas 2010- No talking, walking, eye contact or smiling.

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July 2011….. Getting there, little by little. Learning to use facial expressions, she is walking, talking, laughing and smiling.

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Christmas 2011……….can you see the improvement in just a few short months? Happy New Year!

We are so truly blessed!