Pneumonia

 

We have been experiencing another “first” lately, pneumonia.  Maddi has remained remarkably well and she made it through RSV and Flu season without any problems. Last week marked the beginning of the Spring allergy season here in Cache Valley.  I know the rest of the world the trees “popped”(as my first graders say) weeks ago but for us in Utah’s arctic circle, things take a little longer.

When she developed a little cough I wasn’t worried.  Every spring Maddi goes through the allergy, runny nose that develops into an asthma flair up.  This year the asthma flair ended up being pneumonia.

It is really an interesting phenomenon with a brain injury how easily the brain can completely shut off.  Pneumonia didn’t just create massive cognitive fatigue but it physically wiped her out as well.  It is difficult to predict how illness will affect a brain injury person but for Maddi it is tragic.

Doing school work with her was an unproductive exercise unless I wanted to actually do the homework for her which I will not do.  FRUSTRATION was the operative word especially when you consider that the end of the school year is NOW and we can’t wait until she is better to finish the assignments.

We had to employ what I call “Selective Abandonment” for some of the assignments. I knew the time and frustration was NOT worth the actual academic learning that she would gain.  That was hard for Maddi because she has always been a 4.0 grade point average student.  She doesn’t like to give in to a challenge. In the past determination has always been a successful strategy to use.  Giving up or giving in has never been an option before and she hates that it is necessary at times now.

With pneumonia for Maddi, making everyday decisions takes extreme amounts of focus and willpower and sometimes the brain just doesn’t cooperate and it leaves her empty.

These days for me, as the mom, have been grueling.  I don’t mean to complain but watching her struggle with ordinary life skills reminds me of how much the TBI alters her and changes her choices.  It brings me face to face with how extreme and severe her injury really is.  I put that in the present tense because brain injury doesn’t go away, the recovery has everything to do with the ability to find and form new pathways.

Normally, when people are ill they are able to function mostly on default settings or pathways, those things that no long need thinking to achieve. Similar to when you have a long distance to get home but you don’t remember or recall the drive at all. 

Having Maddi ill illuminates just how many of those default pathways really are gone.

The re-wiring job in her brain has been amazing!  When Maddi was in her coma I told her every day that God wired her up the first time and he could do it a second time. I am here to testify that miracles do happen! 

I felt strongly that she had to believe that God could do it. Obviously, she has a great deal of faith and is surrounded by a huge group of people with extraordinary faith and prayers because God is an amazing neuro-electrician.

Miracles acknowledged and gratitude expressed but 14 years of everyday tasks that once she could do on remote without thinking must be relearned.  I hope that in 14 years her new pathways will be so automatic that when she is ill she can still function but for now, six months is a very short time to develop those skills and have them work without thought.

This last week has made me wonder if I am strong enough for the journey. I question my strength and my ability to endure.  Perhaps admitting that makes me weak, lacking faith, pathetic and a whiner but even if I am all of those things, the truth is the truth! That is how I feel, not always but for a little while.

I promised myself that I wouldn’t pretend so there it is in black and white. ( I hate those blogs that are all rainbows and roses without any of the thorns and flooding) Sometimes doubt, fear and wanting to avoid pain makes me wonder if my determination and stamina will be enough to keep me from breaking under the weight.  Many times the Lord has carried my load but when it is my turn to take it all on it brings me to my knees and I struggle with each step. 

I generally look at each challenge as one I will eventually overcome and I rarely shy away from the work involved. but with this one, combined with all the other challenges on my plate, often makes me feel like I have met my match. Having to witness the struggles for not only Maddi but my other children as well, compels me and fills me with the deepest desire to rescue them.  In the end, however, there is nothing I can do to change the road we are on.  Making each footprint, one at a time, moving forward is all I can manage.

Maddi’s memory of the past is amazing but in that beautiful gift is also pain.  The remembering in contrast to the reality is agony, frustration and sadness especially when the discrepancy is so apparent and undeniable with an additional illness. 

Sometimes, I wish that she couldn’t recognize the difference but in that same moment I wonder if the remembering is part of what pushes her to work so hard to find ways to cope and work around her deficits. 

Who can say for sure?  I am just an observer, one that is wiling to interlock my fingers and my heart with hers to share and find the joy, happiness and miracles together. Also, to help her shoulder the work, pain, disappointment and heartache when she is buckling under and can’t go on. 

Pneumonia will pass, as it always does. Maddi will bounce back I am sure.  My endurance and stamina will increase. As time leads us further and further away from the girl she was, it will be come easier accept the changes and not wish for things to be different.   I am just not sure I wanted or was ready to see how hard it is for Maddi when she is sick.  I could have waited a long time to know the truth of that experience.

I have to remember that I had bad days before the accident and the aftermath will be no different.  Everyone has bad days and we just stand up and face it and some days we just can’t but we muddle through anyway.

I wonder how many people we run in to each day might be having one of those horrific, “it might be better if I was dead kind of days” even if they don’t wear a sign declaring it.

Not to be misconstrued as suicidal tendencies but more the faith that the next life might have some definite perks.  As Maddi describes the other side,I long for that experience, not that I would intentionally give up this life.

Maybe our smile, touch, or kind word could carry the load of someone feeling that way just for a moment.  I know that for me the comments on this blog and my dearest friends and family have lifted me when I needed it most.  Thank You!   I hope to pay it forward and ease the burden for someone else.

Maybe, if the sun would shine and the clouds would bugger off, I would perk up too.  I need some heat people!   I’ll just blame all this bad mojo on the terrible flooding, rain and pneumonia. It will all pass.

In the meantime,I going to find some ultraviolet light bulbs!

Finding A Voice by Maddi

For a long time I could not talk.  I remember when I first started using sign language.  I started signing because my mom showed me the song “Fireflies” by Owl City in Sign Language. 

Before the accident, I enjoyed watching people signing my favorite songs.  She brought up the clip on her computer on YouTube and we watched it over and over again.  We watched my other favorites signing songs too.

When I started signing that gave me hope that I would be able to communicate even if I didn’t find my voice.
I remember my mom putting my hand on her voice box (Adam’s Apple) and talking and having me feel the vibrations of her voice.  She wanted me to talk so badly because she knew the frustration that I felt each night when she would say, “Once you can tell me to stay, I will stay.” 

There are only so many things I could say in sign language since I am a beginner and so is my mom.  Luckily, I knew some sign language before the accident, thanks to my cousins who are deaf.

The first time I spoke was exhilarating.  The first thing I said was Mom.  I made each sound kind of like learning to read.  Then I said dad, then it was like a waterfall.  I didn’t stop talking, I had six weeks to make up for.   I rhymed every single word I knew.

 
Not only did I rhyme, but I was a really good parrot, repeating everything people said to me.  I did that because I needed to get my vocabulary back.  That helped me because it put those words back into storage so I could use them later.

I am so grateful for my voice and the ability to communicate and every else I have re-learned.  What a gift!

Lately

 

Life seems to be in hyper speed these days.  I looked at the date of the last post and I can’t believe it has been that long.  Life is going well and Maddi is improving.

In the last little bit Maddi has learned to ride a bike again!  It was actually a very ironic picture.  When I  said that she has to relearn everything I wasn’t kidding.  Gratefully, the learning curve is pretty quick but who would have thought I would be holding the back of a bike at this stage of my life.

Maddi did great.  I was really there for moral support and to help her with balance.  It was one of the first beautiful spring days we had in Cache Valley, so all the parents were out with their little ones and the bike rituals.  Across the street there were two other families teaching their children to ride a bike, granted their children fit into the early childhood category not the teen scene. 

If I hadn’t been so grateful that Maddi was able to learn to ride a bike, I might have found the picture saddening.  For a moment I thought of how unfair it was but then I saw our new van.

Stay with me and you will see why the van fits.  At the time we replaced the wrecked car we asked the specialists at Primary Children’s if they could predict our transportation needs for the future. 

I wanted to buy something inexpensive to help our finances,(I am a frugal, thrifty, cheapskate) but after looking at the projections we had only a few options to look at and buying an old vehicle was not an option. 

We were told that Maddi would need a wheelchair even with the best possible outcome at least for a while and they couldn’t promise that she wouldn’t need it forever.

Armed with that information we researched which vehicles would be easily fitted for a wheelchair ramp and other necessities.  We knew that buying a new vehicle in the future wasn’t going to happen so we had to plan for the worst with this purchase.

That vehicle journey was actually a lesson in acceptance.  We had to look at reality and go with what we knew without all the hope of a different outcome.  We came home with a very new, well stocked vehicle because of it and gratefully we don’t need the retrofit that was the determining factor in its purchase.

So, as I was holding the back of bike and I looked around, I did see all the little ones learning but when my gaze landed on the van I was reminded of the huge blessing it was that she could even get on the bike.

As she pedaled away from me with the wobbly balance of a novice biker;

• I was reminded of the hours I spent rubbing her legs trying to help her “find” them in her brain. 
• I remembered her first steps and all the time we spent “dancing” to develop the strength in those leg muscles. 
• I remember the many days spent in Physical Therapy hoping that she would kick the ball only to be left waiting again. 
• I remembered when those legs were still and unable to move.

It was actually much like one of those film collages that you see that takes you through the important events of the whole story.  I was so grateful for the moments that led to her learning to ride once more.

I am such a reflective person that the parallel immediately came to my mind that in mortality our progress has little to do with anyone else.  What we need and what we are learning have everything to do with our own journey.

It doesn’t matter if we learn the lesson when we are three, thirteen or thirty as long as we learn it. Comparing is always a lose/lose exercise. 

I was just glad that Maddi’s recovery allowed for me to hold the back of a bike.

This journey reinforces daily the idea of perspective.  If I look at Maddi’s recovery based on where she was prior to the accident the darkness can rise from the corners of my mind. 

However, if I look based on what it “should” have been I am overwhelmed that God would take so much interest in my burden and provide such a great miracle!

If I look at what is, I see my beautiful daughter and I am grateful that I get to walk this road with her, step by step, as she relearns so many old skills and the new ones.  As a result, I am learning too!

Strength comes from many places but in a journey like this one the adage of  “if he asks you to tarry a mile, tarry with him two”  has new meaning.   Having friends and family to journey with makes the walk seem light and the days seem short. 

Knowing that when the Lord said these words I know he is the perfect example of the idea of “tarrying”.  He has walked the miles with us and carried us most of the way.

Life is good!