Tuesday, December 27, 2011

“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”

Thursday, December 22, 2011

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.

Saturday, December 17, 2011

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

Wednesday, December 14, 2011

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!

Friday, November 25, 2011

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:

IMAG0006

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:

DSC_2422

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!

Thursday, November 17, 2011

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 4th grade math curriculum to 7th 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 9th 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 9th 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.

Monday, October 24, 2011

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!