“She is Mine……..First”

I learned my one of my most valuable life lessons at the side of a teeny tiny infant Isolette almost 20 years ago. I can actually bring up a picture of the place in my mind and the reaction in my soul is recreated, in better than 3D resolution. This lesson has been foundational for me throughout my life but especially during the early and lingering moments with Maddi and her recovery.

All those years ago, as I peered at my eldest daughter through the shiny plastic, longing to snuggle her I was overcome with anger and a stubborn resolve to get her well. I just had the worst conversation with the doctor stating that they had never had an infant as young as my daughter survive that particular respiratory illness. She was 7 days old when she fell ill and RSV was little known at that time. He said that I needed to prepare myself.

I foolishly and in a frenzy fueled by fear and despair had a very grown up tantrum right there with the doctor. I don’t remember but I can visualize the poor doctor walking away shaking his head at my denial and at his own regret. After my ill-timed melt down I was left in the dim lights of the Infant Intensive Care Unit staring down in disbelief at the, should be pink, girl I so desperately longed to get to know.

At that moment in the humming quiet, I heard without question…. “She is Mine……..First”. I not only heard it but I felt it throughout every cell in my body that God’s claim trumped mine no matter how much I loved that tiny little soul. I felt much like I envision the water obeying God’s will……automatic, no disputation, no recourse. I was lovingly put in my place. It was such a profound…. “Every knee shall bow moment”. Even now as I write that manifestation reoccurs.

In a misguided attempt to enforce my faith to keep my daughter alive I found myself face to face with the fact that I had absolutely no control. I had been taught all of my life, “Ask and Ye Shall Receive” and “if the desire is righteous nothing will be kept from you” “IF you have enough faith, righteousness, or if you are willing to sacrifice……….” Blah, blah, blah (pardon my disrespect). All of this was taught with the accompanying “If it be thy will” clause but at that moment, the fine print seemed the size of a roadside billboard.

I was chastised and reminded that God….is the Father and I cannot force, beg, plead or negotiate with his will. No amount of faith, obedience, good works, endurance or sacrifice can have any effect on the will of God. I also learned that as protective and possessive as I was with “my” newborn daughter, she really wasn’t mine. She was HIS first and I was blessed enough for any amount of time I had with her. I had to be willing to let her go and “Be Still and Know that He is God”. That was a humbling moment for me, one that has since framed in my life.

Once I did let go with my whole heart and allowed myself to be in full compliance without any reservation or bitterness, my daughter began to heal.  It was not a coincident that she began to improve…..it was by divine design so I could identify, recognize and remember.

As my life progressed that lesson became an anchor during many other trials. It was invaluable during the numerous miscarriages I experienced while trying to have children. I miscarried many more than the four children I have been blessed to raise. Each time as I found myself mourning a birthday that should have been, I was strengthened by the plural form of “She is Mine………First”.

As I struggled at times with my ability to parent effectively, the knowledge from that moment taught me that I had a divine resource to help me in that sacred opportunity. I also gained a valuable insight that these sweet children were my literal brother and sisters before this life. I was meant to be a mentor, not a dictator and it wasn’t about me. I could not accept their achievements, successes or triumphs as my own. I could celebrate with them and be a support when they needed it. I could correct and guide but not overpower. I could influence the structure and opportunities to help them on their way but their personalities and preferences were determined long before I entered the equation and dedicated 9 months to the development of a body for those souls.

Last year, as I once again stood at the bedside of one of my children on the cusp of life and death, the lesson learned all those years ago still proved true. From the very beginning of Maddi’s recovery, I never asked for a miracle, not because I didn’t want one but because I knew if that was God’s will it would be so. God knew the desire of our hearts; we prayed and asked for the strength and peace to be content with HIS will regardless of the outcome.

The day I whispered in Maddi’s ear with tears choking my words,

“We love you and want you here, but if you can’t get well, go with Jesus,”

I could hear the echo in my mind,

“She is Mine…… First”

and each of my cells reacted once again.

I am so humbled and overwhelmed that we were graced with such a miracle and mercy. We are blessed for the deeply sacred nature of our experience. I am so grateful that God in his infinite wisdom walked with me down the original path twenty years ago with my pride and willfulness only to help me find a contrite spirit and willing heart in the form of a life lesson. I know I couldn’t have gone into this last year without all the years of practice and for that I am not only grateful but truly blessed to know;

“She is Mine……..First”

Random Evidences of God and OCD

22 December 2011

I just cleaned out my hairbrush and I saw it as an evidence of God’s Love…. I am driven to remove every small hair out of the tines. I was chastising my OCD nature by saying…..”it isn’t like I am going to kill someone and they will be looking for my DNA.”

That led me to the thought that God actually used his magnificent resources to create an individual so unique that even down to the smallest part it is identifiable. How amazing is that. There have been more people born than I can even number and each one is unique! That is a testament that God loves INDIVIDUALITY.

It is way more efficient to mass produce things, God didn’t do that with our mortal shells……. He made them unique in its smallest part. Talk about OCD……maybe that trait isn’t a negative after all, maybe it is a divine quality.

**************************************************************

Of course my genius children bring up the points that could argue my observation, like identical twins or DNA anomalies but I  stand firm in my personal interpretation of the data, putting those issues in the outlier position.

Must go…… I have started a heated debate, I need inspiration or perhaps, desperation to defend my case.

A Link to Someone New

I stumbled upon another blog that described a Traumatic Brain Injury so uniquely and it had a Christmassy theme so I thought I would share, I was entertained. The author is a stranger to me but is no stranger to Traumatic Brain Injury as she is a survivor as well.

I did not write the following and I give full credit to Kara Swanson for her humor and universal ability to bring home an idea that fits for every human being,  TBI survivor or not.

http://karaswanson.wordpress.com/

Kara Swanson's Brain Injury Blog

December 2, 2011

Below is the post to read.  I hope I am not breaking some kind of cyber copy write law.  I don’t claim any authorship just appreciation.

Rudolph Rocks That Kick-Ass Blinking Nose

Holiday Reflections

I know that it has been a year since the accident and that Maddi is doing amazing but my mind keeps coming up with things to blog about, most are not directly about Maddi but mostly about how we are coping with the huge change in our life. I think that if there is ever a universal theme among people it would be our need to adjust to change

I believe that everyone is going through something that they didn’t plan for.  When we all sat down and did our itinerary for life, I don’t think we could conceive what this life would really be like. It doesn’t take a huge motor vehicle accident to derail people’s souls bringing despair, discouragement or feelings of helplessness.

Sometimes it is just the day to day living of things. With a Traumatic Brain Injury, it is a life long journey, just like every other struggle out there.

“Time passes quickly but sometimes the days are long in living it.”

Some days are amazing and some are just plain dull and really not that much different from before. We just have different struggles now.

This season always brings out deeper feelings of compassion and reflection. Families are looking for ways to make Christmas more meaningful and less commercial, I know that we are, but in the background often times this season also brings out the fear of not measuring up. Not just with the gifts under the tree or with the family gatherings that leave us wishing for stronger ties… or fewer depending on your situation, but also with accepting who we are and our own capacity.

During this journey with Maddi, one of my roles is to help her not only accept the newness and strangeness of her brain but to celebrate the greatness of it. Being a walking miracle can only fill your cup so far. You still have to live in your own skin and sometimes with a traumatic brain injury you feel like you are being held hostage. Learning to be happy with who you are now, is all about acceptance……. but isn’t that the journey for EVERYONE?

I wish I was able to; take more risks, speak well, be more social, keep my mouth shut more often and be more assertive. My drive to do the right things for the right reasons sometimes has a habit of fostering impatience with my own shortcomings and outright misguided decisions. Accepting myself requires that I am OK with my; cautious nature, avoidance of conflict, verbal impulsiveness and deep love for people but in smaller groups. This journey with Maddi has taught me to be more accepting with my own limitations because as with any good teacher you can’t teach what you don’t already know.

The American Dream is one of perseverance and rising above any and all obstacles to reach your potential. This ideal brings tears to our eyes when we see the red, white and blue or hear a rousing patriotic tune. It is the ultimate “You can be whatever you choose” message. Sometimes this message breeds a sense of dissatisfaction because our expectations were grandiose. Being able to do anything you dedicate and set your mind to, is great, but only if it is tempered with reality that you CAN do anything, not to be confused with should do everything. It is easy to detail out all the attributes we should have, but it is rare to find them all in one person and to develop those attributes takes many years to attain.

• I have friends that are amazing at fashion, design and decorating….. I am more about function than beauty but I sure wish I could rock some awesome high heeled shoes without feeling like a poser.
• I deeply admire my friends who can take a conflict head on without agonizing about it afterward.
• I want so badly to throw a party without fighting the need to vomit during the preparation stage.
• More than anything I wish I could be that peacefully, calm, fully refined person but there aren’t enough drugs in this world to slow this brain.

But for every one of those attributes that I do NOT possess I have the core opposites which are the exact traits that make me so….…ME.

• I am always looking for the function and the best organization for effectiveness whether in my home or in my profession, maybe my profession has something to do with the need for sensible shoes.
• My need for harmony between people and being a problem solver should not be put on the “con” list.
• The same thing that causes the deep, internal agony during conflict leads me to love deeply and without reservation. I have never met a person I can’t love,  I just need enough time to understand them.
• My impatience and impulsive nature keeps me in motion and helps me constantly seek for better and to think outside of the box.
• It also provides me deep understanding and empathy for the people who don’t fit the mold because I am one of them.

Sometimes it is better to play to your strengths. Playing to our strengths allows us to be who we are meant to be. I am not talking about sitting back, being comfortable and not putting forth any effort. I mean, be specific on our desired outcomes and use all our best gifts to achieve them and work around our weaknesses just like I am trying to help Maddi do.

The most successful people work within their genius not outside of it! There are as many personalities in the world as there are people; each one is just as valuable as the other. Each personality has its strengths and weaknesses and that is entirely by design at the hand of a loving Heavenly Father and a Savior who can help us see ourselves from their eternal perspective. I am grateful to know that perfection is not a prerequisite to be loved by my Heavenly Father or others around me. It brings me peace to know that conformity is not the end game.

Hopefully, the holidays will bring us feelings of hope, contentedness and peace rather than alternative. Maybe being more accepting with ourselves and each other we can find that Peace on Earth that is promised.

Perhaps we can recognize those melancholy feelings as longing for our Heavenly home and the arms of our Savior rather than a personal failing. The angels promised;

“Good tidings of great joy…….. The Prince of Peace.”

If there was one thing that this journey with Maddi and her traumatic brain injury, has taught me is that we are enough!

God needs and loves EACH one of us in our diversity and imperfections. The birth, life and death of our Savior allows us be just that….. ENOUGH!

A Year of Progress

It is black Friday, the anniversary of “that day” as Maddi put so beautifully in her graduation song.  For those of you who have been with us from the beginning, thank you for following along and praying for us; and for those just finding this blog enjoy the journey. We are blessed by a loving God…. and amazing family and friends.

There is no way to even begin to describe our feelings today so I won’t even try.

 Grateful……. Blessed………Loved

  A picture is worth a thousand words.

Where we have been:

November 26,2010

• 3 weeks in the Pediatric Intensive Care Unit at Primary Children’s Hospital
• 2 weeks in Transitional Care at South Davis
• 4 weeks in the Neuro-Trauma Unit/ Inpatient Rehab
• 65 days in the hospital and that was the easy part.

Where we are now:

November 2011

• Walking, Talking, Thinking, Singing, Laughing
• Ballroom Dancing
• Writing, Reading, Learning
• Continuing to improve!

Looking and Feeling Good,  Our Life is blessed!  Challenging, Yes………….  Impossible, NO!

Life is in the now and the future, not in our past!

Schooling and Reason

I have had many questions regarding Maddi’s schooling in what she is doing, how she is recovering and why she is only in school part time. I hope my post about her testing cleared up most of those questions but I don’t think it adequately described what school looks like for Maddison. Just be warned that education is my passion and it is multi-faceted without a brain injury. What we are doing now is intrinsically related to what we have done previously.

Before I share, I want to be clear that I firmly believe that each parent is divinely equipped to know and understand the needs of each of their children, disabled or not. Just because we chose this route doesn’t mean that we believe that it is the only way to go. Our choice is just that….. ours. When it comes to home school vs. public school, it seems to bring out the monster in people needing to validate their own choice.

I am or was (I don’t know which) an Educator for 12 years in public school. I believe that education is a very personal choice. As an educator I have a better than average understanding of the complexities of public school and different learning environments. So, if you are from the home school camp…. I love you. If you are from the public school camp…. I love you. Let’s not look for reasons to be divided! Please don’t categorize my explanation as lack of support for the public school system. I am a realist and know what can be done in the public school environment given the available resources.

The following quote sums up very well how important personal perception is for ANY student, not just Maddi.

Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”
― Albert Einstein

That being said here is what we are doing with Maddi’s education and our reasons.

Maddi goes to public school for two class periods each day at the Junior High. Last spring Maddison went to school for 4 class periods. Fatigue was her worst enemy then and it still is now. Last year after spending most of her day at school Maddison had very little energy or focus left to do any homework. The amount work coming home was enormous.

Maddi is and always was a high achiever and a dedicated student. We would spend hours studying. She would never give up; she had to complete it all and it had to be correct. Many times the work did nothing to help her retain the information but it was assigned so she would do it. Maddi was able to expertly summarize and analyze the same information both verbally and in an essay. In terms of her recovery, the writing did more for her learning by strengthening her executive function and organizational skills.

She was so tired after being at school and completing the work load that there was little time l to continue working on the remediation we had to do at home. She actually ended up with pneumonia during the last 2 weeks of school and I am certain that the illness was a result of pushing her too hard and too fast.

During the summer Maddi continued working on her math and reading skills. She did amazing! She went from 4^th grade math curriculum to 7^th grade math curriculum in those few short months. It took a lot of work and dedication on Maddi’s part. While everyone else was taking it easy, Maddi was hard at work for three hours each day.As summer was coming to a close we spoke to Maddi about how she felt and what her goals were and what she thought she could handle.  We were willing to support her decision.  She had a really good handle on her own learning and she was able to articulate the stress of going to public school in regards to her brain injury.  We decided a couple of elective classes would be enough to foster and maintain friendships and for her that was the only perk of public school.

The conflict between being Maddison’s mother and her teacher is a little crazy but it works out fairly well. Luckily, Maddi is extremely driven to improve and is not afraid of hard work.  Thank heaven I have a Bachelor’s degree and almost enough graduate credits for a master’s degree in Education. My graduate credits have been specific to language, learning and brain research which comes in pretty handy if I do say so myself. I have the skills to target specifically the areas that Maddison needs to develop and use data to determine the next steps. We can move as quickly or  as slowly as necessary. I have always been more concerned with retention than a letter grade; mastery of the skills is the only grade that counts.

Maddison gets one-on-one feedback in real time when she is making errors and she can correct them on the spot. It is so much more effective than doing an entire assignment incorrectly only to get the feedback several days later when she can’t recall the cause of the errors at all.  Maddi’s struggles in her math are based in her impulse control, sequencing and procedural or executive function skills. Her writing is slow to start but with the correct pre-writing organization to provide the right structure she does amazing. Learning new and connecting old information is going well but still takes dedication on her part.

At home, we are focusing on Math, Science, History and Writing. We spend an hour doing each of the first three topics and then use writing as an accountability and critical thinking piece for Science and History. Writing essays, comparisons, analysis and summaries based in the content taught in those two subjects provides plenty of information and ideas for writing. Providing her learning in this way also increases her retention and understanding as well.

It is difficult to definitively determine where the holes are in her memory so we started with basic Science with the plan to move into biology. In History we are doing Ancient World history based on the Utah State Core Curriculum for 9^th grade students.

It has been great fun for me to learn the ancient world stuff because I have absolutely no recollection of learning about it in school but that could be related to age. It has been almost 30 years since I was in 9^th grade.

It takes a bit of preparation on my part to have read the information and come up with a plan before I teach Maddi. Our debates, conversations and essay topics are appropriate to the history as it has been presented not just from my own perspective.

Maddi is able to read and understand more complicated information than her actual grade level. She is a slower reader than she was by a huge measure but the fluency rate or speed doesn’t change with less complicated text. She reads at the same pace regardless if she is reading Junie B. Jones or Homer’s Odyssey. Her understanding is amazing and not impaired at all.

We are using textbooks that my other children used in their AP history class at the high school. I chose that route mainly because the book was already available and as I was researching textbooks, the common consensus among educators and textbook reviewers was; going slower through a well written, concise upper level text is better than cruising through the watered down versions used in Junior High and High School especially if the reader has advanced reading skills which Maddi has.

This is what Maddi’s day looks like:

• 7:30- 8:45 Get Ready, Breakfast, Journal, Reading
• 9:00-11:30 Public School
• 11:30- 12:15 Lunch and Break
• 12:15-3:15 Science, History, Math and Writing at home

Of course there are cognitive breaks planned throughout that time to prevent cognitive fatigue from setting in.

Reasons for Home School

1. One on one specific instruction
2. Reduced stimulation and distraction
3. Automatic feedback (extremely important)
4. Individual pacing
5. Breaks can planned without missing any instruction
6. Less fatigue, more time, extra- curricular activities, more time with friends
7. No need for accommodations by teachers at public school, they have their hands full already!

The biggest factors used to help us decide on Maddi’s schooling were:

• Effectiveness of the learning during public school time. 
• Could the school provide the opportunities to rewire and strengthen newly developing pathways.
• Available appropriate and socially subtle supervision to prevent incorrect pathways from being developed.

I know that seems really technical but practicing a new skill over and over again incorrectly is less than desirable for a regular kid but for student with a brain injury, you run the risk of never being successful in teaching the skill correctly.

The other main reason for doing the majority of Maddi’s school at home came from Maddi’s preference. Prior to the accident she always liked school. Maddi couldn’t wait to go back after returning home from the hospital but she quickly recognized the reality of the discrepancy between what she needed and what was available at the public school. She still loved going to school but she is an advanced student and they love to learn. I suspect the discrepancy will continue to lessen over time but this recovery time cannot be squandered in an ineffective way.

For the math buffs out there here it is; which is greater 50% or 90-100%?

Public School Setting and Pace

50% retention and understanding= unacceptable! If that was all Maddi could do, I would be fine with that but she is capable of far more.

Maddi understands and retains 50% of presented grade level (improved from 30%) material at the given pace at school.

50/100 = a less than educated student.

She required extensive re-teaching to filter through superfluous material and to rectify the confusion created from too much information in one setting and cognitive fatigue.

Home Setting and Pace

90-100% retention and understanding= exemplary

Using the same curriculum Maddi understands and retains 90-100% of grade level material as presented over a 2 day period.

Even 90/100 is a well-educated student.

I know that other children struggle in school and the classrooms are filled with kids getting less than 100%. I also know that the schools are doing an amazing job for most students. Maddi’s situation doesn’t fall into any general category. Her injury requires specialized instruction that even Special Ed. is ill equipped to provide. Teaching her two or three years below her grade level won’t ever help her develop the skills to perform on level, which she is capable of. Boredom and apathy would be the result. Deleting half of the requirements to accommodate her pacing would only leave her lacking. That just leads to more holes in her learning and it sets her up to be ill prepared for the next classes she is required to take.

I am dedicated to long term outcomes not just the temporary ones. From the time I saw Maddi laying on that hospital bed with a machine keeping her alive, I had a long term perspective. I knew that if God granted us a miracle that this journey would not be easy. We would  be required to make decisions that would not make sense to people who didn’t understand and there are no short cuts. We were looking at a road less traveled.

Robert Frost’s most famous poem illustrates beautifully our decisions for Maddi. I had no desire to travel the road we are on but we “diverged in the yellow wood” that day. I know the choices we make right now will…… “make all the difference”.

The Road not Taken Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth; Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same, And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back. I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.

Ultimately, I knew we were in God’s hands and with our hands cooperating with HIS we could do anything. We recognize the great blessing we have been given and we know that it comes from a Heavenly Father who loves us and “ He wants her to succeed”.

There is a reason Maddi returned, supporting her recovery to help her reach her full potential, brain injury aside, is our God given charge………regardless of the condition of the road.

TBI vs. Dance Competition by Maddi

Horns blared, cars were packed like Sardines on the road. This is how it feels inside my head when I get over stimulated, except in my head there are six lanes of traffic instead of a one-way road and I can't move.

This is the worst my day will bring, I think, ballroom competition, here I come!

Finally, we, my parents and I, arrive at the high school. We walk straight to the gym, get our hands stamped, and walk in to the gymnasium.

 Never mind, I think this is the worst my day will bring.

The gym had bleachers on both sides with a person in each seat. Above the bleachers, in the upper deck, I saw flashes of red, blue, and green, the costumes for the Open routines. Tables were on the back side and the dance floor had rushes of energy on one side and graceful movements, the other. At the on-deck area, dancers were anxiously awaiting their chance to shine. I could tell this was going to be a straining day. It was loud, crowded, and I was sure the florescent lights were going to give me a headache.

We spot my team and walk past rows of people in the bleachers to reach the table. I set my things down and find a seat. I am immediately engulfed in conversation. I had people fixing my hair and my makeup almost instantaneously.

There were so many people! My heart pounded loud in my ears adding to the stimulation. It's going to be a late night, I thought, these things always end late.

When the competition finally started, my friends weaved their way into a sea of black and white.  They were so good! The music began and my friends started bouncing with the beat, they were dancing the cha-cha. My heart pounded with excitement. I was positive they would get called back! People were wooping and yelling, cheering and clapping, the noise could have given a deaf man a headache, but that was OK, I needed to support my team.

The music ended and my friends eagerly checked the screen for their call-back, it wasn't there. With long faces, they walked back to our table, “We didn't get called back.” they said.

“Really? I thought you would, you were fantastic out there!”

The next round of dance began, the music started, and people were cheering for their respective teams. Rounds and rounds of dancing followed. The anticipation was beating on me like a drum . The competition was put on hold for lunch, there were more rounds of dance, and then it was my turn.

My partner and I walked onto the floor. We were in position, the music was blaring, and we started at a syncopated beat. The monster of frustration over-came me, but I kept my cool, we tried to get on beat but it was a complete failure. I knew, deep down in my heart, we would not get called back. When the music ended, my suspicions were confirmed. We walked back to the team's table to watch the hours of dancing to come. Even though, the dance competition was mostly just repetition, it was still extremely fun.

As I was watching, a partnership seemed quite familiar. As I watched that couple more and more, I realized it was Mason, my brother! I searched his back for his number and once it was in view, I began cheering for him with all my heart. His partner's dress looked as though it came right off the screen of a silent movie! It wasn't the uniform black skirt and white shirt that was the requirement for syllabus, it was the uniqueness of the Open competitions.

All in all, I felt the competition was well worth the over stimulation. Even though, I was tired, it was a success! I mean, I danced, supported my team, and watched Mason get fifth place in the Open Standard. That's a lot to do with a tired and injured brain. What a day!

If this is the worst a dance competition will bring, I will do it over and over again!

Post Accident Testing

We had Maddi’s in depth evaluations in September. I can’t believe we are knocking on the year mark door. Thanksgiving will be here before I even blink! It has taken me a while to figure out how to interpret all the technical terms and testing scores for the laymen reading this blog. I am very familiar with academic and cognitive testing through my profession as an Educator.

One thing I have learned with testing is that it is just one piece of the puzzle. It is information and predictive but not set in cement. I have seen kids who are brilliant but are terrible with follow through. I have seen other kids that work their tails off and outperform some of those spontaneously brilliant people. Testing doesn’t have much to do with REAL life and how things work, effort is the real indicator. Testing gives us information to help make pertinent and intelligent decisions that can influence the desired outcome.

We met with her neuro-rehab doctor and we met with the Neuro –psych doctor as well. It is really hard to explain all the details of these tests. The Rehab tests are the easiest because we could see Maddi perform the physical tasks she was asked to do. For example; stand on one foot, measuring flexibility, heel/toe walking, tiptoe walking, heal walking, follow her finger that sort of stuff.

The Rehab Doctor gave her a once over and proclaimed that Maddi had a “perfect” exam! What that means in laymen terms is that Maddi has successfully recreated or rewired all of the physical pathways from her brain to all the physical parts of her body. She can move her hands and legs; she has regained her balance and her ability to track things with her eyes. She has a delay in processing speed and her fine motor skills are not completely there but many non- TBI (Traumatic Brain Injury) people do as well as Maddi on that particular test. I personally would have failed it miserably but I have never asserted that I am normal. So the short story is Maddi’s recovery has been physically MIRACULOUS!

The Neuro-Psych doctor was a different kind of testing. His specialty is giving test that give information about what is going on inside the brain and how that affects Maddi cognitively, academically and logically. These tests are used to develop an academic plan for Maddi. It took a full day to complete the tests. Her appointment started at 9am and we walked out of his office well after 5 pm. These tests were specific and narrowly targeted. She actually scored extremely well in all areas except Math.

The only tiny detail is that all tests were given in a one-on-one setting with plenty of breaks. This has been a re-occurring theme in figuring out the best way to structure things so Maddi can learn. There are four things that affect Maddi and her abilities; distractors, attention, stimulation and fatigue. If any of these elements are in play her results are hugely different.

Based on these tests; Maddi scores in the NORMAL range for every aspect except Math. If you needed proof that God can intervene on your behalf, here it is. If you were wondering if MIRACLES happen today, not just in the “Bible”; Maddi’s recovery is a testament to the reality of miracles and a Living, Loving God in every respect.

I remember vividly wanting to pray for this kind of outcome but I feared I would be asking too much of the Lord. Instead we prayed to be able to accept God’s will in Maddi’s recovery. The only way Maddi was able to score this well based on her injuries is through God’s intervention!

There aren’t enough positive “CHANCE” cards on life’s Monopoly board. We “did not pass go, nor collect our 200 dollars” more often than not and we definitely didn’t have a “get out of jail free” card. I don’t believe in coincidences or fate and I don’t believe that we did anything to deserve this great blessing.

This MIRACLE was and will always be, because of God’s mercy and love for us. God, in his goodness, saw us in our time of trial and had compassion on us, just like he did for so many others in his earthly ministry. Faith was the only component needed. I knew God COULD, I just didn’t know IF he WOULD. That IF has been answered with a resounding YES!

Yet, even with this miracle there is work and struggle. Maddi isn’t 100% but she is more than half way there! Gratitude and the Miracle have not erased all indication of the brain injury, perhaps what is left is just enough to keep us from forgetting the MIRACLE.

Maddi’s biggest strength for learning is verbal language. The struggle is the duration of attention and the ability to keep information in her short term memory and retrieve it at the appropriate time. If she gets loaded down with too many things at one time the brain and memory tend to dump it all.

Maddi’s logic is good in the small details but she tends to miss the big picture especially when it isn’t blatantly specified and she is rigid in her approach to problem solving. Learning to alter her approach is needed.

She also struggles with social structures and language. She is very blunt and extremely literal without much tact right now but she will learn. The skills that were the most practiced and unchanging are the ones that have been relatively unaffected by the TBI.

Those skills that are constantly in motion are more difficult. Social things with people, in general, are difficult to navigate, but with teens, specifically the rules seem completely arbitrary with no predictable results. One person can say/do/wear something and it is deemed as “cool” but someone else is seen as inappropriate. How do you teach that?

Maddi reads, spells and comprehends above a high school level. Maddi was a great reader before and that skill was easily rewired or may not have been affected much by the injury. The experts can’t really explain it. There are big fluency and speed differences that affect how much information she can learn and understand in one sitting. She often uses the information to reference her answers. This is a result of that new and old information paradox. She isn’t sure if what she “knows” is based in the most recent information or if it is something she knew before. It is difficult to “verify” information in that context. It creates uncertainty in her decision making. Besides that little hiccup, Maddi’s short term and long term memory are within the normal range as well.

We are truly blessed to have her testing come out so well even though we understand it is just one blip on the landscape of information about Maddi. It is a MIRACLE for sure.

The most difficult are those four major issues; fatigue, attention, stimulation and distractors. They infiltrate all areas of learning. If she is fatigued her scoring falls to the severely impaired range.

• Being unable to differentiate between superfluous dialogs in a classroom vs. important information hinders learning in a huge way.
• If the amount of time she is required to attend to a specific topic, task or skill exceeds her “built in” timing the rest of the information tends to fall out of the brain.
• Having lots of stimulation requires extraordinary effort on her behalf and that leads to……..fatigue.

She had a global (meaning in all areas) Traumatic Brain Injury which has produced global weaknesses but she also has some amazing strengths.

It is actually interesting that her strengths and weakness seem to be complementary. It is almost as if for every issue the Lord has provided her a work around; a way to compensate. If I didn’t understand the Law of Opposition before…….. I do now. If she can sort out the HOW then she will be unstoppable in whatever she decides to do. I know this is a lot of mumbo-jumbo but the long and short of it is:

Maddi can learn and be productive in all areas of life. She just has to do it a little bit differently with a little more fine-tuned approach, but ultimately she is capable of learning, doing and becoming anything she wants to be.

Here is the FAQ section.

• Does she still have a Traumatic Brain Injury? Yes, but comparing the outcome to what could have been, we are thrilled with Maddi 2.0.
• Is she back to normal? No, she never will be, but she will learn to be effective and productive regardless of the TBI issues. The newness will become normal for her.
• Will this ever go away? No, as human beings, we are all designed to adapt and adjust and Maddi is capable of both. Fatigue, stamina, stimulation, attention and distractions will always be a part of her life. Knowing her she will turn them into strengths!
• Can she go to college? Absolutely, but she may take two classes at a time instead of four, not a big deal we have at least 80 years of learning. Why are we always in such a rush? Geesh!
• Does she still have recovery work to do? Yes. But in reality, don’t we all? We are all trying to adjust to our own insides. Learning happens in days, months and years.
• Can she go back to school full time? The answer is yes, but would she be able to learn well in that environment right now, no.
• She needs time to develop coping strategies and new tolerances for stimulation.
• She needs one on one instruction to fully retain the content and she needs extra time to get it in long term memory.
• Six hours of daily frustration would just convince her that she is unable.
• Re-teaching everything after hours is not an option. As Maddi’s stamina and skills increase, she will increase her time spent at school.

Life is supposed to be about JOY!

Hopefully, I didn’t create more questions than I answered. Maddi is doing amazing! Life is looking good for her. It has been a long stretch on this road but by taking one moment and step at a time we are further down the path of recovery for Maddi!

I personally am glad we are here and not still there.

Testing Completed…………….Bright Future Ahead!

Music and the Spirit

Many times during this journey  the Spirit spoke to me, answered my prayers and gave me comfort through music, specifically hymns. I want to document one of those tender moments. First, there is something you need to know about me. My life is lived with a constant backdrop of song and lyrics. I can’t remember a time where music wasn’t a daily function in my life. I am not particularly talented but I love the lyrics which read as poetry to my soul and I love each musical resolution in the chord progressions. In my youth, not to insinuate that I am in any way old, I sang and sang, probably to the complete irritation and annoyance to everyone around me.

I learned to read the written word through the hymn book at church. Each time we sing, “I Need Thee Every Hour”, it reminds me of the astonishment I felt as a tiny little girl when I realized that the first 3 words were all long vowels and that Need and Thee were from the same “family”. Church was hard for me as a kid. I am hyperactive and have never sat well. I am impulsive and have difficulty keeping my mouth shut since I process and experience my world through words. If I was truly listening and understanding I NEEDED to verbally summarize and apply was what being said……not completely appropriate in a quiet setting.

Each Sunday walking dutifully behind my parents I only saw the two leather bound books in my mother’s arms. There were no quiet books, snacks or colorful pictures to capture my attention. The only entertainment was the scriptures and the hymnal. Being a person with a 10 second attention span, the pages and pages of seemingly millions of words found in the scriptures were just abstract works of art done in black and white. I didn’t find the magic in them till I could truly read. The hymnal, at least, had a rise and fall of the notes on the page. There was the top and the bottom and then the lyrics settled beautifully in the middles of the two. I loved that beautiful blue book.

The hours spent on the bench each week truly were agonizing for me. My legs dangling from the bench went numb but it wasn’t respectful to put your feet up, “no sense stepping on Jesus”, yes, I was raised in the Bible belt and there has been some southern Baptist influence. It wasn’t that I didn’t understand the importance. My heart and spirit were “there” I just hadn’t learned to master my body yet and the tingling legs didn’t help. I am sure I felt many ear tugs or “taps” on my head to correct my bad behavior.

Each week, as I recognized more and more words on the page the difficulty of the quiet was filled with the sound of music. For me those lyrics were like an ancient day “Where’s Waldo”. It was like a multisensory learning game. I, not only, started to knit the words together with meaning but as I was “reading” the tune, harmony and melodies would play in the background. It is the same for me today.

Generally, if you were to watch me during the Sacrament, you will see me with my tiny personal hymnal. During the quiet times I read and re-read the lyrics to my favorite hymn. It is always interesting to me that each week I am drawn to different hymns and most often the lyrics are exactly what my heart needs to hear.

You may be asking yourself what this has to do with Maddisized. I cannot even begin to articulate the number of times during those most difficult days that a hymn would spontaneously and without conscious thought begin to play in my mind with the lyrics complete and in the undeniable, recognized voice of the Holy Ghost.

One of the first songs to occupy that unconscious space was, “Jesus, Savior, Pilot Me” (104). This song has always been a favorite. The familiar and easy melody with its hypnotic harmony made its way into my heart as a teen.

The first verse rang true to me because I could visualize being tossed and thrown against the waves. That was my exact feeling.

Jesus, Savior, Pilot me over life’s tempestuous sea.

Unknown waves before me roll, hiding rocks and treacherous shoal.

Chart and Compass came from thee, Jesus Savior, Pilot Me.

My life felt like a dangerous sea that was out to swallow me and my family whole. I had no idea where this journey with Maddi would take us just like the angry waves tossing a helpless boat over its blue canvas. There were too many hidden and dangerous things that I couldn’t see.

With the PROMISE of direction in the metaphor, “Chart and Compass came from thee”, I knew that Jesus WOULD Pilot me through this journey. Actually, this song is where I came up with the idea to use Journey to signify what we were going through.

I wanted a neutral term that would allow me to focus on the positive rather than a word like “accident or tragedy” and I needed a word that signified movement and that this moment was temporary and things would get easier.

“As a mother stills her child, thou canst hush the ocean wild.

Boisterous waves obey thy will, when thou say’st to them “Be Still”.

Wondrous Sovereign of the sea, Jesus, Savior Pilot Me.”

Even though Maddi was “still” and in a coma at the time, I had the deepest desire to comfort, fix and communicate with her. I was desperate to hear her voice or see her eyes. It gave me great hope that if the Lord can hush the wildest ocean and water must obey him then if it was HIS will, Maddi could recover………… and if not, he could hush my metaphorical “ocean wild” and I would obey and I, too, would be still.

The usage of the Sovereign and Wondrous in the last line along with the plea for Jesus to take over at the helm created the deeply personal and internal picture of me relinquishing my boat to his expert care. When the anxiety, fear and despair would creep in I would return to that picture of handing it all over to my Elder Brother who knew me and loved with a love I hope one day to be able to return in kind. I need a great artist to capture that moment for me so I can hang it in a prominent spot in my home.

“When at last I near the shore and the fearful breakers roar.

Twixt me and the peaceful rest, then while leaning on thy breast.

May I hear thee say to me, I will Pilot thee”.

Nearing the shore the waves are sometimes the most dangerous. You have to get through those “breaking” waves to reach your destination. To brave those waves you have to put aside your Fears and take them head on or else you are likely to capsize with your goal within sight. For me, the promise of leaning on the Lord for strength and putting my fears aside felt like manna. I didn’t eat much during that time but spiritually I was on life support for my strength. To further the little video clip going on in my head, the feeling of being held by my Savior and the peace waiting after I rode those terrible waves of recovery….. gave me an incentive and strength to press forward.

In spite of the day to day relevance and the history this hymn has for me there is a story attached. I have a nephew that received his mission call and his “un-farewell” was schedule just shortly (a little more than 3 weeks) after the accident. Maddi was still at Primary Children’s in the Neuro-Trauma Unit. She wasn’t really improving much. She had experience her first bath and John and I were enrolled in a crash course. We were learning the basics for long term invalid care, brain injury and the far reaching adjustments looming in the future. We had endured the worst case scenario and learned that Maddi would live but the HOW of that life was still in question.

John and I were torn about attending. We wanted to support our nephew and we wanted him to know that we love and care deeply for him but leaving Maddi at that time was so difficult.

At the time we could only tell from the monitors that Maddi was distressed when we left. Ultimately, I called either my mom or my sister; I can’t recall which of them came. Knowing that we weren’t leaving Maddi “alone” was such a blessing for us. How grateful we were for those many family members who stayed with Maddi when we absolutely had other things we had to attend to.

Going to the “un-farewell” was a symbolic gesture of accepting the life we were engaged in at the time. It was an attempt to look past our survival mode and for us to re-enter the world of other people. John’s family is huge and many of those people we had not seen since the accident.We didn’t want to miss an important event but we feared we would overshadow the joy of his day with our situation. So, we intentionally arrived with very little time before the meeting started. We found seats by some dear friends and the meeting began.

My favorite part of church is the singing of the hymns. If they ever stopped the music I would seriously think about worshipping in the mountains or something. I am sure the songs fit the season and the occasion but the only song I could hear was “Jesus, Savior Pilot Me”. The ringing of it in my ears drowned out any other music. The Spirit was conversing with me and supplying me courage. I don’t know that you are ever ready to embark an unexpected and undesired journey but that day and with that song, I found a very relevant story woven between the music and lyrics. I was hanging on each chord and word for strength.

I don’t recall much of what was said in the meeting, the stress of the situation made everything a fog. I remember reading and re-reading the words to that hymn throughout that entire meeting. I don’t remember if I even spoke to anyone directly except for my nephew. I hugged him and wished him well and told him that I knew he would make a great missionary, that his service would change him forever and that I loved him. It probably didn’t mean much to him but I meant every word of it.

I thought about him and prayed for him and his family when he entered the MTC just 3 short days later.

I thought of my own missionary son out in the field and how our experience was affecting him.I reflected on the short phone call when we told him about his sister with emotion and compassion pounding in my heart. I prayed for him to find a working place that would allow him the peace as he finished his work. I worried about how strange our life and family would seem when he returned six months later. I contemplated the idea that perhaps Maddi’s recovery would be seen as one of the missionary blessings.

As the meeting ended we exited “stage left” quickly not wanting to cause a scene and we purposefully didn’t go to the luncheon afterwards because we wanted it to be HIS day, not a Maddi press conference. On the drive back to the hospital I desperately wanted to find this experience to be a nightmare instead of my reality.

My heart was heavy missing my other kids who were more than 100 miles from me. I missed my own ward family and the familiar rock behind the pulpit. I missed the comfort of my own bed. I missed the laughter of my daughter. I missed our “nightly” family scripture and prayer together and the weird irreverent humor that always seems to come out at that time. I even missed the heated debates that happen across the dinner table.

I wondered about our life if Maddi didn’t improve and how that would affect my dearly loved but nearly grown children. I wondered how we would recover ourselves. Life seemed so uncertain.

“Jesus, Savior Pilot Me”…. continued as we parked in our usual spot and walked the long succession of steps to the doorway leading to a different life.

As I paused reaching for the handle the cadence and final resolve of the song rang through to center of my soul…….

“Fear Not, I will pilot thee.”

…..and I knew HE would.

Anonymous

One of the most beautiful results of this unfortunate event has been to see the deep love and caring that people have for each other.  We have been the recipients of such service and love in so many ways.  It has been a testimony to the goodness of the human family.

It is much easier for me to be the giver than the receiver so it has been a great lesson for me. I prefer the anonymous route for giving and have never considered how badly the person might want to give thanks for such a great blessing.

I wish I could detail out all the wonderful acts of service but I am sure I would miss someone.

This post is partly for the anonymous person that has been consistently helping us out. You know who you are and to what I am referring to.  I wanted to give an accounting of how you have provided for our needs. Sometimes you never get to know how your sacrifice helps but today you get a glimmer of you greatness.  Your selfless gifts have relieved some of our burden. Thanks you so much!

You have so graciously given us:

1. Clothes for Maddi, she has grown 6 inches since the accident.  A whole new wardrobe was needed.

2.  Gas for our car to get to the many appointments 100 miles away. Gasoline is the silent killer of our budget.

3.  All of Maddi’s school books for her continued education. Buying curriculum isn’t cheap.

4. Repairs and registration to the above mentioned car to allow gas to filter through the tank.

5. Ballroom dance lessons that are an important part of Maddi’s Rehab.  Dancing helps increase her processing speed and helps connect the brain to the body in real time.

6. Therapy appointments, $35 copays add up fast, new glasses and prescriptions

That is just a sampling of the ways your kindness helped us adjust to our new life.  We don’t know who you are but you know and we want you to feel our deepest appreciation. 

Our journey would have been much more difficult and dark without all of the kindness from so many different people; spiritually, emotionally and temporally.  A huge thank you goes out to all of you;

• those who have prayed and are still praying for us
• those who call or use any manner of technology (email, texting or Facebook) just to see how we are doing
• those words of encouragement that you may not even know you gave but made the biggest difference
• those special friends who know how drag me out of my house
• those people who have taken the time to get to know and love the new Maddi.
• those of you who have been there and listened to our heartfelt struggles and loved us through it all

We, as a family and myself, personally want to thank you.  I hope the blessings of love are returned to you in the time that you needed it most.  I hope to be able to see the needs around me and be quick to serve as well.

The song; Old City Bar from Tran-Siberian Orchestra (TSO) summarizes how we feel and how we hope to find ways to “arrange it” for others around us in their time of need.

If you want to arrange it
This world you can change it
If we could somehow make this
Christmas thing last

By helping a neighbor
Or even a stranger
And to know who needs help
You need only just ask

This is a shout out and thank you to ALL who have “arranged it” for us, anonymous or not!

 

The Good, the Bad and the Otherwise–By Maddi

Adjusting to Maddi 2.0 is hard, for everyone. That means my friends, my family and myself. Sometimes my days are good, sometimes they're bad, and sometimes they're something in between, just kind of otherwise.

Sometimes, I start reading “Smile on My Forehead” a book written by a woman who also had a TBI named Jennifer Mosher, and I end up in tears. This is not because the story is terribly sad, it is simply because a lot of the experiences she went through, I am going through right now. But other days, I come home smiling and bubbly as ever but sometimes I am just in a melancholy mood.

Despite all the kinds of days I have, they are all hard. They all have fatigue, forgetting and learning. But even on the worst days; I get to see my friends, my family.  I am thankful for how far I have come. Some people may think that just because I am walking and talking, I am fine and just the way I was. This could not be farther from the truth. The long-lasting effects of my brain injury will be my shadow for the rest of my life.

Adjusting is the hardest part. The learning is not over, and it probably never will be. But, the giant metaphorical hill (my hospital stay and all the hard things with it) is behind me. Although this is the case, I think that this part of my journey is the hardest. To what part am I referring?

The mental/emotional part. Everyone says that the teenage years are the hardest, but teenage girl plus TBI equals……………….bad combination.

There are many, many, things that are hard for me. Some are:

• Remembering both short-term and what happened to me
• Following Conversations
• Having to stop participating in certain activities because of headaches
• People expecting the same out of me as before
• Getting my point across
• Not being able to do certain sports like skiing

Despite all the hard things, there are quite a few good things as well. Such as:

• Everything is getting easier over time
• My friends support me & try to help me
• I can still do lots of things
• I have more confidence
• I know I can do hard things
• My family is super supportive

If I was asked to say something supportive or helpful to some one struggling with some difficult
trial, I would say;

“Everyone's got something that they are going through.”

“Everything gets easier over time.”

“Just keep pushing through, it will all be worth it in the end.”

Lapse of Time

I haven’t blogged for a while. There is this critic in the back of my mind saying that there isn’t an audience and by continuing to blog about our journey, I am trying to drag out this experience (not that it will ever go away) or that I haven’t accepted the past or that I am completely self- absorbed to think anyone even cares. I am finding out that none of the above mentioned things are true. Actually the blogging is all about acceptance and people are interested in the rest of the story. Brain Injury is a lifelong journey just like any other disability with its good days and bad ones. This blog started out to give information but it quickly became a way to document, reflect, accept and adapt to our new life.

I have recently been asked why I haven’t done an update and it truly goes back to that critical voice and the vulnerability I feel as I share the details of our story. Maddi was injured but that injury has created a new experience each one of us. This isn’t about me but as the writer of this blog I can only write from my own perspective. I don’t want to come off as a “whiner” or a “super hero”, nor do I want to seem self-important or give the impression we are unique or special. One thing this experience has taught me is just how many people are struggling with hard things in their lives, most difficulties originating from no personal fault or choice. All it takes is a listening ear to hear about ordinary “Davids” facing their “Goliaths” all around us.

I am just a regular person doing the best I can with the cards I have been handed. I just want to be real and honest about what is happening and the cascading effect that terrible day had on our lives. I don’t want to omit the hard stuff but I don’t want to linger there either. We experienced a great miracle that has been a huge blessing in our life personally and as a family. Even with the miraculous recovery this journey has required adaptation and sacrifice.

Maddi is against all odds, adjusting so well to her new brain. It takes daily work and struggle but she is figuring out how to deal with the memory issues and her ability to express herself within a conversation with many people. She is adjusting to her physical and mental fatigue and learning her limits as well. She is learning not to expect people to remember that her brain is injured and trying not to be hurt when people can’t deal with the change between before and now. She is learning to be strong in her choices and to ignore other opinions that could make her feel inadequate. She is learning not to define her life by anyone else’s standard and in the process she is learning to leave the judging to God because not only are her injuries invisible but most people have invisible “things” that affect their choices.

We are private people and don’t spread our business around, happy or sad. This blog really is out of character for us as a family but especially for me personally. As I write I open my soul knowing that there are those waiting to judge and criticize, but I feel compelled to continue.

Maddi spends time reading other blogs written by people with brain injuries and what they write comforts, inspires and helps her. It gives her hope that life will one day seem normal and that someone out there truly does know what she is going through and they are able to make it work too. Maybe for someone else this blog can do the same for them. If one person has a better day after reading, then it is of worth.

This miracle has been humbling, stressful, horrific, amazing, and illuminating for me personally and for our family. It has brought us face to face with the most basic human fears, death, separation and permanent changes in people we love. It forced us to take a good look at where we have spent our time, money and energy and whether they were good investments. It put our family to the test in terms of unity, understanding, and toleration. It has shown us just how equipped we are to support each other during a crisis and the lingering long term effects of this accident and any future difficulties.

I think every family whether they admit it or not deals with this unity test. It may not be through something catastrophic but in some way or at some time all families either bond together or pull apart. There is no middle ground, either you are moving towards or away from each other and that movement takes work. Sometimes the work is pleasant, fulfilling and delightfully fun and other times is it dirty, messy, disappointing and extremely difficult. Pretending one way or another doesn’t change the reality of it.

In honesty, my kids are amazing but definitely not perfect, but I am not perfect either! As a family we are still trying to adjust and maybe we just think about it too much but it takes deliberate effort to remember that things are not the same as before and forgetting that fact can create contention, division and hurt feelings.

We had to relinquish the idea that we can shape our own future in the most basic ways. The idea that if you do the right things everything will work out is true, in its most pure form, but not in the practical day to day living of things. Sometimes things just happen and they derail all of your best laid plans and changing past choices would have no real effect on the outcome. It is best to avoid anyone outside of the situation, who says “you should have done…..”. Being on the outside they have no understanding of the variables or reason for past choices. It has brought a deeper application of the terms; “endure to the end, thou shalt not judge and mourn with those who mourn.”

Looking forward is uncertain and looking back you see only shadows of what truly was. We can only live today in the best way possible and that is what counts. The great scripture that is known as simply, “Consider the Lilies” is applicable here. This scripture has brought me such peace in this wave tossed boat we are in.

One of the things that Maddi said Jesus told her when she was in her coma was that; “He wants me to succeed. He wants me to be happy.” When she told me this in the dim light of her room and in her raspy whisper of a voice, the impression came to me that success, of course, was defined from an eternal perspective rather than from mortality. Success would come from emulating our Savior and would be defined between people’s hearts in that unseen but important space. It is all about how much love, compassion and understanding we extend to our earthly brothers and sisters regardless of the situation, similarities or differences.

I don’t know about anyone else but knowing I have a loving Father in Heaven and a Big Brother who love me and “want me to succeed”, gives me such feeling comfort, acceptance and a deeper desire to be all I should be. If God can create a universe that functions so effortlessly then perhaps he created me to be eternally successful and happy too, even if it doesn’t register as success here on earth.

Omitted but Remembered

It has been interesting to have Maddi reading the blog post from the accident. She wants to understand what happened to her during the time outside of her narrow view of the events. As we read, I recognized how much of the story I left out of the blog posts. At the time, I purposefully only told part of the story to maintain hope in those around us. We needed to see the hope in the eyes of our visitors because the world we were living in didn’t allow us much hope at the time.

When I wrote that Maddi opened her eyes for the first time, we were ecstatic! That was true but what you didn’t know was that the only way we could tell whether she was “awake” or asleep was by watching a machine. Her vital signs told us any and all information about her status not her eyes or her body. She was still in a coma at that time. Coming out of a coma is completely unlike what is seen on T.V. It takes weeks, months and sometimes years to make that journey. We called it coming out of the maze.

When we took Maddi off the ventilator she had a terrible case of pneumonia and there was actually some hope that the pneumonia would take her to spare her the life of a full time invalid. So, though we were giving the positive spin about taking the ventilator off early and her breathing on her own, we also knew the great possibility that she wouldn’t have the strength to fight the pneumonia and it could result in her death. That was a terrible time for us. We did not want Maddi to leave mortality but we didn’t want her trapped here either.

The choices we had to make during that time still give me pause and I am grateful for the strength provided by the Spirit. Until you have actually been in the horrific position of making a decision that could result in the death of someone you love dearly, it is impossible to even begin to imagine that moment and the agonizing time spent in search of a different answer. That journey creates a spiritual and emotional change that permanently marks you soul.

We weren’t actually praying for a miracle. We were praying for enough strength to accept God’s will regardless of what that meant. We knew that the chances of Maddi having a truly miraculous recovery were very slim. We saw the scans that showed that her entire brain had been injured. We knew that the thalamic storms she suffered for weeks were not a good indicator for success. We also knew that every day she remain unresponsive increased the likelihood that she would stay that way. We didn’t have the strength to share all of that information with the world or even our families because we needed them to keep hoping. If we had given all of the information, in the eyes where we needed to see hope, we would have seen defeat.

Our other children KNEW the truth but we as a family decide we would not allow the negative or fear to infuse our minds and hearts until we truly knew outcome. We focused on the moment and didn’t worry about the past or the future. They knew the possibilities; they also had a lot of faith in God but also the resiliency of our family to handle our future but also knew we would handle it then…….. In the future. The planning and preparing the details of our new future was and still is the responsibility of John and I, together as a team.

We purposefully didn’t give a lot of details to Jacob who was serving a mission because we didn’t think he needed the daily worry. There wasn’t anything he could do about it anyway. We figured by July we could prepare him for what Maddi was like at that time. We sent him photos as a file he could open when he was ready. I don’t know at what time he took a peek but from talking to Jacob since his return, we handled things well for him.

We were excited by any and all movement Maddi made early on but it wasn’t until Christmas time that we could definitely tell the difference between her spastic, reflexive movement and those that she initiated with purpose. The first time I truly thought she was moving with purpose was when she had her first bath and she used her left hand to stroke her left leg. It seemed like she was trying to find out if her legs were still there. That was the beginning of her recognizing that her body was still available to her. She didn’t “find” the right side of her body until much, much later.

She scratched her head, compulsively. I don’t doubt that her head itched but it was not a voluntary action. She couldn’t stop; it was like a cyclical pattern that had a definite rhythm. She spent four weeks repeatedly scratching her head over and over again and then another four weeks working hard not to. For the less than frequent visitor they would rejoice seeing her “take care of an itch”. While we knew that if she didn’t continue to recover she would be stuck repeating that action like a puppet on a string with no conscious choice involved.

When Maddi finally took an orange out of my hand we were able to truly hope that she would regain some mastery over her own body. The orange was followed quickly by drawing, coloring and writing and eventually she moved from her upper body to her legs. Many, many days of “dancing” with her to develop strength in her legs began to pay off.

The blog as it was written only covers about one third of our journey. What was omitted was intended to keep hope alive but I also chose not to write out our fears, worries and anguish in an attempt to minimize the focus on the negative. I held to mantra with vigilance; “What you focus on expands!” It was a daily task to “Keep it on the Sunny Side”. Some days we did very well and others we were not as successful but from this vantage point we did a pretty good job!

Maybe, little by little, I will fill in the gaps but we are just so grateful for the blessings given during that time and for the miraculous recovery that Maddi has made. We are so busy pursuing our new normal and figuring out the next steps in our life that we don’t have much time to dwell on the past. Only during reflection or in my attempt to record those things that haven’t been written but have been kept close to my heart do we find ourselves reminiscing. Forever changed but seeing life as bright!

We will never be able to repay the kindness that was extended to us. Thanks to all! How blessed we are to be surrounded by such great friends and family! We live in a fabulous area with wonderful neighbors and dear friends. We have such gratitude for the simple things…..sunshine, beautiful mountains, evening walks, time with family, abundance from our garden, our Dearest Savior, each breath of life!

Life is good and is getting better every day!

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