The Weekend

 

We attended our first big family party since Maddi came home from the hospital. I know that probably sounds crazy since we have been home for almost three months. With the weather and all of the adjustments we were just waiting for the right time.

Easter Sunday provided us the opportunity and the chaos. Those of you who know my husband’s family are aware of the chaos and noise that goes on at one of their parties. With more than 50 people and half of them grandchildren there was lots of potential.  We ventured anyway. I was dreading this event not because I didn’t want to see family or didn’t want to navigate the noise and chaos but because I knew that this would be a time that Maddi would come face to face with who she was before the accident and who she is now. The change would be undeniable and I knew that it would create pain and would start another dimension of this journey.

For those family members reading this blog, this has nothing to do with anyone personally or any specific event. It was and is just an inevitable part of this healing. Those times where things should feel the most familiar often times feel the most unreal, the most un-normal.

Honestly, my dread was about my own cowardice. I didn’t want to begin that part of the journey. Maddi has such a great attitude about all of the hard work and the changes she has to adapt to that I just didn’t want to see the recognition set in.

For a person with limited time spent with Maddi they see only the most obvious changes. The deepest and most difficult changes are only apparent to those closest to her. Knowing Maddi as well as I do, I knew that this party would be difficult.  There would be no denying the differences.

Things were fine at first but eventually that moment happened. She began to realize how different she felt and how everyone else is still the same. For everyone else it was “same stuff, different day” for Maddi it was “same stuff, different brain”. The realization of all that she has been through and continues to work through every day became a heavy load.

This is a real part of this journey. I think all of this is a lot for a 14 year old to process through. I dare say that many of us might not handle it as well as she has. We can’t definitively pinpoint the severed axons and damaged cells and determine their neurological function and say, “here you go, you just can’t…….” We just have to work like there will be a full recovery and accept what doesn’t come. This takes time and we won’t know for sure for a long time yet.

We spent some time walking the dog, talking and crying on the grass. I spent my time with her listening as she told me her deepest fears and most painful realizations: feelings of not being understood, loss, frustration, not belonging, not fitting in, feeling out of phase, fear of being injured again, longing for the past and wishing to be Maddi 1.0, all were part of the emotional storm she felt that day.

“She looks fine, so she must be fine,” Is the furthest thing from the truth.

I am just so glad she is willing to tell me how she is feeling. That is so much better than keeping it buried deep inside. For me as the mom listening without any way to fix it was a particularly difficult place to be in. I wish with everything inside me to be able to take this burden from her. My heart was breaking for her.

I cried with her and told her I understood and I do, more than she can ever comprehend until she has her own little girl. Letting her tell how she felt without any judgment or taking it personal was critical because the harder job still had to be done; helping her look into the future and not letting this one day alter her optimism and hope.

My role was to focus her sites on the long term picture instead of the moment. Everyone has hard stuff! We all get to choose how we will approach life’s disappointments. With a brain injury, and I would assert in life in general, it is important to carefully pay attention to the pathways we build. This is a deliberate effort, optimism doesn’t happen accidently, it is chosen. I have said it before, what you focus on expands.

I know to some it may seem that we are dragging this experience out forever. Unless you understand Brain Injury, I can understand why you might think that. With Maddi’s type of injury she will continue to heal and get better for a long time.

The first year has the most rapid growth but she can still be physically healing for up to 5 years. We hope that in that time her deficits will be completely accommodated and she will have adapted so well that this time will seem like a bad dream. We hope that all of her original goals and dreams will be attainable just delayed a little bit as she recovers.

The original purpose of this blog was to give information to those who love Maddi. The purpose has now changed to documenting this journey all in one place. Some of the posts would probably be better suited for a personal journal but we believe that the truth is so much better than some fabrication.

Luckily for the reader, when those torrential emotional moments come we generally aren’t writing. Some days just aren’t that inspiring, some days are horrific and difficult but usually by the time we get around to writing we are feeling better and our perspective, through lots of hard work, has shifted again to happiness. If we are telling this story we intend to tell the whole story!

We won’t always post on this blog, eventually I will continue writing on our family blog and Maddi’s adventures will blend in with the rest of my remarkable kids, just as they did before. Maddisized will fade into the background of our lives but our lives will always be divided between before and after.

Right now we are still in the early healing stages of her injury, even though for many of you, having the “crisis” over creates the perception is that she is done healing. That isn’t so, each stage has different issues; physical, emotional and mental. Over time her Traumatic Brain Injury will take a second chair to the new life she builds, but it will always be part of Maddi 2.0.

We are forever altered by this experience. We have felt the hand of God in our lives, once touched, we are forever changed.  We have tested our own inner core to the breaking point and still we move forward carried by; Faith, Hope, the Power of Prayer and the Spirit as our guide, grateful for each new day we have together as a family.

Events and Reasons

 

Some of you are aware that Maddi has been speaking at events to kick off fundraising for Primary Children’s Medical Center.  Maddi’s work in this area is to bring awareness and a personal connection with the fundraising campaigns.

I have had some people ask whether or not our medical bills will be taken care of because of her appearances.  The answer is NO.  First off, the reason for the fundraising is to provide charity care of those who are the most needy. 

We don’t qualify not because this is a walk in the park for us but because we have health insurance.  Also, there are so many families from out of state that have to give up their jobs and lives to be at the bedside of their critically ill child for much longer periods of time.  In our case, I haven’t been able to work since the accident but John has been.  We have taken a terrible financial hit but we will make it through eventually.  Others have a far more difficult financial road to walk than we do.

We are so aware of how devastating these types of situations are but we are just as keenly aware of how blessed we have been.  All of John’s leave was donated by the beautiful people at Hill Air Force Base. 

They sent out an email and asked for donated hours.  I wish I could remember how many total hours were donated but for the 65 days of Maddi’s hospital stay, John’s leave was paid strictly by individual people and their sacrifice and kindness.  That will never be forgotten! 

A huge THANK YOU to those in charge at Hill Air Force Base that allows people the chance to give in that way.  I know that at my employment there were many people willing to donate days in my behalf but the policies are written to prevent that type of kindness.  It is a tribute to the great people around us that we have been taken care of so well.

Maddi’s involvement with Primary Children’s Foundation is strictly her way of giving back.  She wants to take lemons and make lemonade.  I think she is doing a great job! 

Maddi has been part in a miracle and has experienced things that are incredibly difficult but also beautiful.  Her experiences in her “still time” strengthens her and she wants to share that with others to strengthen their faith and give them hope that this life is temporary and that we have loved ones looking out for us even if we can’t see them.

So, when you see her and us on the Tele-thon in June or hear about us speaking in different places know that the reason for us doing any of it, is all about giving back.  It is not for our own personal gain.  We just want to pay it forward.

We can’t start a foundation of our own nor can we donate money to one that already exists, but we can donate our time and share our story to help those around us.  It is all about HOPE, FAITH and CHARITY.

Who Moved My Cheese? by Maddi

 

So, I was thinking the other day how I wish things could go back to normal. The thing is that they are normal, this normal is just kind of different.

New Normal

• Half day of school
• Lots of homework help
• Lots of things I am not allowed to do
• Nightmares
• Gigantic love for stuffed animals (sounds strange for a 14 year old but can’t help it)
• Smidgen of anxiety
• Huge fear of being hurt again
• Fear of being alone
• I have more confidence

OLD NORMAL

• Full day of school, easy sneezy
• Not much homework at all
• I could do just about anything.
• A+ in sleeping
• Smaller love of stuffed animals
• Normal amounts of anxiety
• Little fear of being hurt
• Fear of being alone- Not a problem
• Worried about what other people thought

Let me try and describe what it is like to be inside my brain. It is like my brain is a giant white board and some random “eraser dude” comes and erases ideas and words in no particular order. I never know when it is going to happen and when the “eraser dude” will show up. He is REALLY annoying. I wish I had a “De-eraser machine.”

Before the accident, I always thought of my brain as a room with rows and rows of files cabinets. Now all my files are on the floor and the cabinets are missing along with some seemingly important information. My file cabinets used to be nice and orderly, not so much anymore and besides the cabinets are MIA (missing in action). Hey! Who Moved my Cheese (cabinets)?

That is so FRUSTRATING! Unless you can climb in my brain, take my word for it, you don’t want to know what that feels like. Sometimes my emotions have a mind of their own and I can’t rein them in. Sometimes it just REALLY SUCKS!

Since I can remember what my brain was like before, it feels like I am inside someone else’s brain and they are just NOT listening. I am not trying to complain but this IS what it IS. I really want things to be the way they were but we are past the point of no return. I am slowing learning to accept my new brain, AKA Maddi 2.0.

Having more confidence is definitely a PRO rather than a CON. Now, what other people think is far less important than what I think in regards to myself. Maintaining my integrity and doing what is right is a whole lot more important than what is popular. Not that I wasn’t that way before but now I don’t feel bad if people don’t like it.   I have a whole new perspective about life. All of this is temporary.

I mean, Heavenly Father isn’t going to ask us if we were the prom queen or how many Facebook friends we had. He is going to ask us questions about our integrity and how we treated other people and if we did what was right.

Life is all about learning and no one is perfect. People who pretend they are perfect don’t understand much about life. We are perfected only through God and the Atonement. Our job is to do the best we can and learn from our mistakes.

Despite the frustrations, my new brain is growing on me. Maybe one day it will feel like MY brain instead of someone else’s. Until then, I guess I’m stuck! At least I know who I am and I am confident in that.

The Wonderful Virtues of a Mother by Maddi

Mothers are AMAZING (especially mine)! These
are ten reasons my mom is just awesome:

1. She was there in the hospital and it made me feel loved.

2. She helped me to begin to walk again. It made me feel like she believed in me.

3. She gave me a reason to come out of my coma because she was there, she loved me and wanted me back.

4. She moved me around so I wouldn’t get sores in the
hospital when I couldn’t move for myself.

5. She loves me for who I am. She makes me feel like I don’t have to be someone I am not to get her love. What I am is enough and that gives me confidence.

6. She loves me with all her heart. She does those simple things that lets me know that she cares.

7. She succeeds in helping me become a better person. She teaches me all the skills that I will need for the rest of my life.

8. She makes me breakfast. Enough said!

9. She wants me to succeed. What mom doesn’t want their kids to succeed?

10. She is honest and benevolent. She tells me the truth even if it isn’t what I want to hear. That is the greatest kindness she can give me.

This is my tribute to my mom. You are the most amazing and beautiful woman, inside and out, in the world. I love you with all my heart just like you love me. When you get old (age is just a number) I will return the favor. Love ya, mom!

There are many more but in the efforts of trying NOT
to bore you, I think I’ll just quit there.

More School

 

Today marks another milestone for Maddi.  We signed up for two more classes at South Cache Junior High.

We have been talking about increasing her time spent in school just to see how she would manage things.  With the two classes she is taking she is doing pretty well, accommodations are still needed but for the most part she is doing quite well.

With 9th grade looming in the near future with its transcripts and permanency we decided we needed to see what she could handle.  We see this year as the time to see what she needs and it gives us the time to figure out the details.

So, now in addition to Art and History, Maddi will be taking Reading and English as well.  Time has been an issue.  Being home with all the other family members and their different time schedules and needs has made getting Maddi in bed early so difficult.  At the hospital she was in bed at 8 pm and up at 7 am.  Those hours are impossible with our home schedule.  She usually gets to bed around 10 pm and get up at 8 am. 

Sleep is a huge need for good recovery for a traumatic brain injury.  Cognitive fatigue is guaranteed with sleep deprivation and her need for sleep is greater because her brain is still healing.  Given that knowledge we are a little worried about the 8 am start time for school but we have to try sometime! We will adapt!

So starting on Monday the 18th of April, Maddi will  go to school for the first 4 class periods of the day.  She will still get to visit at lunch and then eat at home.   She will be gone from 8-12:20.  She is excited and so am I.  I worry about the homework load but we will work that out as well.

Little by little things will get closer and closer to the way it was in most things. There will always be some things that will be different but different is not always bad.

Executive Function Rehab and Indexing

So, much of Maddi’s recovery now seems invisible and to the outsider it is hard to track. I thought that I would share with you the most effective rehab tool I have found for Executive Function.

Just a quick review, Executive Function is the ability to make decisions, analyze information, utilize that information in a reasonable way and come up with a plan and follow it through to completion. This is my layman’s definition. This is where the bulk our work is being done.

These decision skills are gradually developed through day by day trial and error but they are the basis for independent life and good decision making. Good decision lead to a happy life and I don’t want to think about the alternative.

Any parent who has watched the “brain fairy” come and take their teenager’s brain for any length of time can attest to the necessity of those skills and the anxiety that is created when they don’t have them.

Knowing what the needs were I went looking for a way to provide lots of practice. Games are great but the motivation to play is built into the activity. Often we are expected to utilized our Executive Function abilities even when the motivation or desire is missing. Sometimes the decisions also are difficult and in real life there aren’t any game cheats.

As I was pondering the need and how to approach it, I went to do some indexing as I often do when something is bothering me. Some of you might know what I am talking about but some may have no idea. The small of it is that indexing is taking hand written historical documents and putting them into a digital format. It is a huge project that is worldwide in its efforts

I happen to love doing Census documents. You look at the document and type in the names, relationships, ages, birth places and immigration dates. I love doing this mostly because it quiets my brain and I feel like I am giving service but I can do it in my “jammies” if I want.

Anyway, I was engaged in this work not really thinking about anything in particular., I can usually do a “batch” of 50 names is less than 30 minutes, I started to feel a swelling, an odd sense of A-ha and a deep understanding for a new application of indexing.

Now I have been dedicated to indexing for more than two years I have completed more than 25,000 names. That may not seem like many compared to the obsessed indexer but for me with a full time job and a house full of teenagers I am amazed I could do even that many. A new perspective was opening up for me. I began to see how indexing was my answer for Maddi’s Executive Function needs.

My passion for indexing has always been huge but now my love has gone from just service oriented to personally driven. My desire to serve has always been present but I never expected this particular service to bless me in such a personal and important way.

It was impressed on my mind that if Maddi would get involved in this activity she would be exercising her Executive Function skills and those skills would improve. She would have to:

• set goals


• look carefully at the information


• make decisions based on what she sees


• decipher some pretty bad handwriting at times stretching her reasoning skills


• follow through and track across the lines of the documents


• And in indexing proofreading isn’t optional but mandatory.


• Pay careful attention to details


• Stay committed to finishing the task

So, armed with a very real testimony that my prayers had been answered and that doing the indexing would help Maddi, I had to convince her to try it. Indexing is really not that hard but it can be complicated but most teens see it as cumbersome and tedious or they would just rather do something else.

Well, to make a long story short, Maddi agreed to do one batch every day. I think she has completed almost 1000 names. Her first batch of 50 names took more than 2 hours to complete she now can complete a batch in less than 1 hour.

In the beginning I sat right with her to check her work to be sure she was accurate, now I sit next to her with my own batches going and just review when she has a question. She is doing awesome!

What started out as a non-negotiable part of our day has now become something I find her doing when she is bored with nothing to do. I think she actually likes it! I love that she will dedicate that time to service and that it is helping her improve her abilities to make decision and reason things out in her mind.

If you want to join the worldwide effort go to this website, http://indexing.familysearch.org/

Everything you need to know is there to be a part of this great work! It is free and all you have to do is sign up.

These documents are used in genealogical research and for those looking for their long lost ancestors for whatever reason.

I am grateful for the valuable bit of inspiration I received that day. I am thrilled that she was willing to try it. I am glad that God was willing to answer my prayer and provide me with a tool to help her.

Blue Day

 

I met a dear friend at Primary Children's after both of us were dealt the crushing blow that shattered the lives we knew in a blink of an eye. One day we were talking and she mentioned that she was having a blue day.

Ever since that day I have used that term to describe a day that is filled with wishing for the life I had before and the dreams that have been stolen. It symbolizes in those two little words all the pieces scattered along this road that at one time were unified. It illustrates well for me the hurdles and challenges I see when I look down the road into the future.

A blue day encapsulates all the grief and pain that must be put aside to function in the present. Everyone has these kinds of days but for those of us going through a recent traumatic, life altering event it can be pretty intense.

That is not to diminish anyone else's struggles or hardships. We all have them and I would never presume to think I have any idea what your blue day feels like. I only know my own.

A blue day doesn’t mean you can’t cope or your that you are so depressed you want to take a rash action.  A blue day is just a day where reality settles and rather than wanting to be submissive, patient and full of faith you want things your own way instead of the Lord’s.

A lot of the journey now is now spent in re knitting the family together, finding the new balance, integrating a whole new mind set into an existing structure. During this time I have had a few of those blue days.

I am finding it difficult to write the details of this part of the journey on the blog because there is so much growth and too many dearly loved characters engrossed in a hugely difficult and defining part of their lives. No one wants their dirty laundry hung out on the figurative cyber line. In all that growth, sometimes it goes well and sometimes............not so much.

Being unable to make decisions and have a plan for the future can easily send me down the cool tint of blue but my antidote is to look at the blessings and good going on in my life. Some days the looking calms my fears and other days it is just another illustration of how much work needs to be done to rebuild our life.

One of the most difficult things is seeing that no one else's life has been disrupted, even though we are so happy and relieved that this is so. Their lives get to continue on their original trajectory .

Even those who are closest to us seem to be experiencing "life as usual" and this story has become a past event like a picture in an old photo album, while we are still living it in 3D. We want this experience to fade into the background too, but for us that has yet to happen and won't for quite some time.

I know that I wouldn't want it any different for those around us. In this case, misery doesn't love company. I would do anything to shield those I love from this kind of adventure, but I just wish I could join them in that unfettered, unshattered, more predictable world. The hospital phase is beginning to fade but the reality we are facing is blinking in burning neon lights.

At the hospital they talk about getting used to a new normal and we are beginning to see some of that, except the new normal doesn't feel right. It feels odd and out of phase. I am beginning to wonder if that is what they were referring to.

We adjust to the newness of our life but it feels surreal, like dancing with a shadow of what was, while trying to find the substance of the full body of life and no one has taught us the steps.

This post isn't meant to complain. We have been blessed so much and I am not overlooking that but even when miracles happen there is "stinking hard" work in the aftermath. I think it is valuable to see all sides of the experience and it is important in sharing this journey that it be truthful even when the picture isn’t a masterpiece. Even as a child I was not a fairy tale girl. I believe in being happy now and  happily ever after working for happiness.

I have purposely tried to focus on the blessings and the positive things throughout this experience as a remedy and protection from the darkness that lingers waiting to pounce, but this is indescribable. Superwoman, I am not!

I hear there is this elite group of superwomen who love to think they can, do and know it all. I do not claim belong to that sorority, nor would I participate in a rush week for it. My hat is off to them but I have never met a real one, if they even exist.

Maybe they are just characters from an urban folklore to keep women comparing and judging each other and themselves. That would be a great tool for division among those who have the most to give.

• Maybe someone reading this blog is having a blue day and is berating themselves for not being able to just "buck up" and deal with it.
• Maybe knowing that someone else feels the same way will strengthen them to help them get through a day that feels ten years long.
• Maybe someone who has never experienced anything like this will find it in their heart to feel compassionate instead of judgmental with someone they see today.
• Maybe some day, one of my posterity will be going through a terrible personal journey and will find peace in these words.
• Maybe honesty will help drop the pretenses that exist, allowing us to better lift the hands that hang down and lift where we stand.
• Maybe the words just need to be written.

I am amazed that anyone even reads this blog but even if no one reads it, when the dimness of years shroud around my mind to rob me of my memories. I will have this to remind me of where I have been.

In the book; "A Smile on My Forehead" by Jennifer Mosher, she describes living with a Traumatic Brain Injury (TBI). It gives an inside look at the life long journey of acceptance and compensating that TBI requires. You can buy her book online at http://www.jennifermosher.com/

It is a fascinating read if you want a better understanding of what we are learning to live with or a personal internal glimpse of what it is like to have a TBI.

We went to a book club meeting where the author spoke. What a beautiful soul Jennifer has and how grateful I am that we were invited by a complete stranger to attend. Maddi was able to visit with Jennifer and feel understood by someone who really knows.

I highly recommend this book. I think it should be required reading for all family members and it is far more interesting than the other 10 books I have read on the TBI topic.

Life in general is a journey with all kinds of ups and downs. This journey for us is no different. We have our good days and our bad ones. For as long as I can remember my goal has always been to have a strong, united family. Every action, flawed or not, I have taken up to this day has been to fulfill that goal.

This type of traumatic experience either makes you or breaks you, personally and as a family. We are in those defining moments of that journey right now. I can't and won't pretend that it is easy. It is not and there are too many variables to have a predictable outcome right now.

That leaves me again with that thing called FAITH. That is all I have to cling to these days. What would I do without that inner core of strength but to crumble under the weight.

Maybe I am a slow learner or maybe I am making it harder than it is. But it isn't like anything normal you have ever experienced. There isn't any comparison. The relationships are different  but the slate is not wiped clean for anyone. Maddi is trying to adjust, and so are the rest of us. I can only imagine how that feels inside her own head.

It is more like gutting a house and remolding it while you have to live in it. Each new completed task bring great joy, but it is messy and irritating, full of set backs and unknown problems but you move forward knowing the expense, effort and work will be worth it.

In the end I have to believe that we, as a family, will stand strong and united, otherwise when the final stripping of everything that is or ever has been important to me happens, it will leave me with my greatest fear....................standing alone with those I love scattered and shattered along the way.

The words of a favorite hymn of mine have become a daily affirmation for me in this journey. It calms my fears and gives me hope that I can borrow the strength from Him, who knows me best, to help get me through this uncertain and unsettling time in our lives.

With that hope and a lot of prayer and hard work, my family will make it through intact and happy with our fingers interlocked in love, understanding and support for each other no matter what lurks in the sunshine or the shadows even with the scattering of blue days.

I will not doubt, I will not fear,

God's love and strength are always near.

His promised gift helps me to find,

An inner strength and peace of mind.

I give the Father willingly,

My trust, my prayer, humility.

His Spirit guides, his love assures,

That fear departs when FAITH endures.

Luncheon

Maddi was asked to speak at a Fundraising Luncheon a couple of weeks ago. Opportunities are coming more and more for Maddi to share her story. She and we as a family have been invited to do the Telethon in June and of course we agreed. This is one of our ways of giving back. I am certainly not looking for fame or notoriety and neither is Maddi. It actually kind of gives me pains in the stomach really. I just want my plain, ordinary life back but since that isn't a choice, we are trying to see opportunities to make a difference in the midst of this journey.

The purpose of the luncheon was to encourage and kick off a fundraising campaign for Primary Children’s Medical Center. If you see the balloons at COSTCO for the Primary Miracle Network. That is the group Maddi spoke to.

At his luncheon they went through the STATE totals for this campaign last year and the amount of money raised in the ENTIRE STATE would NOT have covered all of Maddi's expenses for her 65 day stay and there are children who are patients for much, much longer.

So when you see those balloons maybe think again about dropping a buck or two. Not that we personally will benefit from it because we won't, but someone else whose life has been shattered might have a chance for a small measure of relief.

Anyway..............................

Those of you who know Maddi personally know that she used to have severe stage fright! She made it her goal in 5th grade to get over that fear and has been steadily working it out. When she spoke at Jacob’s farewell, she felt like she was going to vomit! She gets so nervous in front of a crowd. So when she was asked she hesitated..............but accepted.

Her thinking is that anytime an opportunity is available to help someone through her experience she wants to do it. She is committed to having some positive outcomes be a result of this trial. So stage fright and all, she wrote a talk, practiced it many, many times and she ultimately delivered it beautifully. If I can figure it out I will add the text of her talk as a page to the blog.

She did get nervous but didn't feel like she was going to "toss her cookies". We prayed more than once on the way down and when we arrived to help steady her nerves. I am so glad she understands and will utilize that tool.

After Maddi spoke they asked us if either John or I wanted to say something impromptu. I was so surprised to see John jump right up and put the numbers in perspective for those people in attendance. If you know John at all he doesn't like the spotlight, but he went for it. He did a great job!

The food was amazing and getting to spend time with John and Maddi was fabulous. Hopefully we inspired someone to reach deep.