2011 vs. 2012

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

March 2011

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

March 2012

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

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

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

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

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

Traumatic Brain Injury is a game changer!

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

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

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

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

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

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

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

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

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

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

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

Smiling and Happiness

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

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

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

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

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

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

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

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

Unfinished Business

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

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

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

Crazy I know.

Sisters

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

Brooke and Maddi

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

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

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

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

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

Donna

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

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

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

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

Julie

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

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

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

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

How has your sister blessed your life? 

Years End

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

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

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

In this defining time we have learned:

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

 

 

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

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

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

We are so truly blessed!

“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.

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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.