Friday, September 30, 2016

Blinded by the Light

Yesterday, after being kind of down all week, I had a couple of hours alone.
 
This NEVER happens.
 
I found myself actually returning to bed, burying my head in the covers and forming my own little pity party. As I laid there, I started thinking about all the ways that my life is...well...less than fun, right now. However, I noticed that each time I wanted to wallow and dwell on all the "bad" circumstances, and the separation I feel from everyone else, I kept finding my thoughts turned to all the many ways my family has been blessed, and all the people that had blessed us.
 
Try as I might, although I still felt down, I knew that I had no reason to feel this way and that I had fallen into a trap of feeling sorry for myself.  It's so easy to do.


Each of us have things in our life that we feel alone in.  I am sure of it.  Whether it is health, finances, jobs, relationships, children...we all have things that we wish were better.  It is easy to stew about those things which causes our mindset to change.  Once you start finding fault, or falling victim, (whatever the case may be), it is easy to start adding to the pile.  Or at least it is for me.

 
 
Yesterday I emailed Steven's nurse and updated her on the condition of his hips.  The appointment for his orthopedic doctor is on Tuesday, and we both know that surgery is inevitable.  I shared with the nurse that Steven's pain level has increased dramatically, probably in part to the tapering of the steroids (which probably helped to mask the inflammation.)  He is now taking pain pills to take the edge off and is using crutches inside the house.  Of course, in public, he will not use anything to assist him walking, therefore we are limited in what we do, or where we go.  Thankfully, because he knows how much he missed with the kids when we were in St. Louis, it is still a priority to go to all their ballgames, and he still hasn't missed one.  This is so important to the kids, and me.

I also shared that Steven's knees and shoulders had started to ache as well, and questioned if this could also be due to bone damage, all the while dreading her answer.  And...well, while we were on the subject, there was this issue of a sore throat that he had been having...
 
Head, shoulders, knees and hips...knees and hips.   (Sing with me now.)
 
Suddenly, because of my own doing, I couldn't see the light at the end of the tunnel, despite the fact that I was basking in it.
 
*****
 
I spent the time in St. Louis praying for the day when my husband was cancer free.  It is all I longed for, and what I prayed for. 
 
He is currently cancer free.
 
This past week I started losing sight of how far we had came and started only looking at how far we have yet to go.  I would like to say that my feelings were prompted by such heartbreak over Steven's pain...but that wouldn't be entirely true.  Although I hate seeing him hurt, it would be much more honest of me to admit that the theme at my pity party was probably celebrating poor, pitiful me.  Poor Kim, she has to do this.  Poor Kim, she has to do that.  Poor Kim, she wants to be able to do these things with her husband.   
 
Poor Kim...when will anyone ever take care of her? 
 
Oh yes.  It was a great party.  Aren't you sorry you weren't there?

Thankfully, as I stated, the party was crashed with reminders of blessings that have rained down like confetti, making this journey all the more bearable and colorful.  I knew that my mindset had to change.  It isn't "poor Kim" at all...  No, in fact, Kim is so very fortunate and she needed to realize it. 
 
And so, although not easily, I. Realized. It.  I got up, got moving, said a prayer of thankfulness, and carried on.
 
I decided to purposefully look upon all the good things in our lives.  How could I, of all people, fail to see how lucky Steven and I are?  If nothing else...we are home.  It is far too easy to look out into this world and find those who are struggling much more than I am.  Than Steven is.


Sadly, we are far from being the only people with trials.  In fact, it would be much harder to look out into the world and find someone without them.  Impossible, actually.  There is more than enough suffering to go around...  I hope to maintain this clarity, and I will strive to help carry someone else's burden or lighten someone else's load.  It is, in all actuality, the best way to make you put down your own.
 
Who knows, maybe I will even forget where I placed it.

 

Tuesday, September 20, 2016

Dear Donor


Dear Donor,

I have tried to mentally compose what I would say to you if this day ever came.  In fact, once, only a few weeks ago, I sat down at the computer to start putting those thoughts into words.  And then I stopped myself.  Although my husband was doing well, it felt as if writing a letter that can only be sent after someone reaches the one year milestone, might be tempting fate.

Although, honestly, I don’t know that I believe in fate. 

What I do believe in?   God.   Prayers.   Mercy.   Miracles.  And the unbelievable selflessness that was shown to us by a stranger- you.

Two years ago, my husband started feeling more tired than usual and blamed it on a cold that he couldn’t get rid of.  He was a self-employed fence builder and worked as a contract laborer building pipe fence around power substations.  It was hot outside and he was welding.  We blamed his fatigue on that, but this was my husband, and we should have known better.

*****

You see, my husband has always been a bit super human and had survived both a bull-riding accident that severed his liver, as well as a tractor flipping over on top of him, breaking his leg.  He was the hardest worker I had ever known and solid muscle.  He rose before 5 a.m. to leave for work and many nights, didn’t come home from work until after 8.  Dedication to his family was a priority, as was providing for them. 

In fact, this is what he was known for, aside from his handlebar mustache - being a hard worker and being an AMAZING father.

*****

On September 5, 2014 we found out that it wasn’t a cold.  Or his heart.  Or mono.  No, my husband, the definition of health, was diagnosed with Acute Myeloid Leukemia-AML.  In one moment, our world crashed down around us.  I remember telling the kids that their daddy had leukemia and our son, 9 years old at the time, said “That’s CANCER!”  The fear in his voice only mirrored the fear in our hearts.

Shortly after his diagnosis it became obvious that he would need a stem cell transplant to have any chance at survival.  My husband and I traveled three hours from home and stayed there for four months, separated from our children, while he received treatment and his first transplant.  The first transplant was a blessing in more ways than one.  The stem cells were from his brother, from which he had been estranged.  The two siblings were brought back together.

Yet, despite the blessings, five months later my husband relapsed.

In an effort to get him back into remission he underwent intensive chemo once again, and this time you could see the devastation his body was enduring.  Throughout his prior hospitalizations and transplants, he would get up every day, put his clothes on and treat it as any other day…determined that it would be.  However, after his relapse, his body just wasn’t able to do that.  My husband, previously 165 lbs., weighed in at 113 lbs.  The super human before me looked like anything but.  And, for the first time, even he doubted that he could make it through this horrible disease.  Although we were never without hope, I would be lying if I didn’t admit that hope had started to fade somewhat.  

When the doctors started looking for another donor in May 2015, after his relapse, we found that the only 10/10 match could not be located.  They started looking at the possibility of having to go with donor that wasn’t a perfect match, but were hesitant to do so.  In the meantime, my husband underwent more chemo, closer to home, in an effort to prevent the leukemia from getting worse.

About the same time that we found out that the chemo had been successful in almost completely eliminating any trace of the mutated gene that caused his cancer, which was unexpected, we also were told that a 10/10 match was located.  YOU. 

*****

Last year, when everyone else was thinking about celebrating Labor Day, you were getting ready to be a miracle worker.  A potential life saver.

As we prepared to travel the three hours back to the hospital to begin treatment to prepare my husband’s body for transplant, our hometown, who had rose up in support of our family, was reminded to pray for you, the donor, during this process. 

I hope you felt those prayers that day, and every day since.

You have changed my life and I didn’t have cancer.  Both of my children are changed forever, and they didn’t have cancer.  And, it goes without saying, my husband was changed physically, and emotionally, because of you and he DID have cancer.

But he doesn’t today.  Thanks to you.

You have allowed my family 365+ more days as a family of four that we wouldn’t have had without you.  You have caused our eyes and heart to be opened to the selflessness of strangers around us.  You have made this big world, smaller, and reminded our family how we are ALL deeply connected.

This year, the year that my husband wouldn’t have had without your gift, we have gone on a family vacation to Gulf Shores. He was able to spend summer break with his children. Because of you, we have had more time to laugh together, play together and love together.  My husband has been able to go and watch our kid’s baseball, volleyball and basketball games.  He has been able to enjoy the farm and family he had worked his whole life for.  My children and I have been able to see his physical body recover, and because of your gift, I hope that their mind can erase the image of their daddy when he was so ill.  You have allowed us a year to fully appreciate the outpouring of love, support and kindness that has been shown to us, and you have given us hope that one day, we will be able to repay it all. 

You have allowed others, through our experience, to better appreciate the gift of life.  You have given us hope that this story we have shared might have a happy ending.  You have given others hope, through my husband.  You have motivated others to register to become donors because you so selflessly were.

In short, YOU have changed the world.

It might sound too grandiose to be believed.  I will be the first to admit that we live in a small town that most have never heard of, and in comparison to others, our “world” is pretty small.  That being said, the world is changed one person at a time and YOU have changed many, many people.  Yes, the actions of a person that we have never met have altered multiple lives.  Family, friends, neighbors, acquaintances and people that have joined us on this journey have ALL been changed by YOU, through your gift to my husband.

My heart is full and I know I am failing at adequately conveying what my family wishes to say.  “Thank you” is not sufficient.  In fact, I don’t know any word in the English language that is.  Whatever your life holds, know that you have already made an impact that many will never have the chance to make.  You are, in every sense of the word, a hero.  Mine.  My children’s.  And, of course, my husband’s.

*****

There are so many times that our family has mentioned you in conversation.  Whether it was because my husband, after 42 years, suddenly developed a liking to Chinese food, or because of some new interest he picked up… you, the donor, are brought up, wondering if we can in fact, attribute these new qualities to you.  We wonder if there are physical or characteristic similarities.  We contemplate whether or not you share his amazing (yet sometimes maddening) sense of humor.  We think about the circumstances that prompted you to register as a donor.  And the kids and I wonder if you know what an amazing man you saved and what an amazing man you are.

I hope you do.

I pray you do.

There just aren’t words enough to express it…so I will just end it with:

With humbling and inexpressible gratitude,

Your recipient’s wife

Thursday, September 15, 2016

Imprinted On My Heart

Saturday, September 10, 2016, Steven celebrated his first re-birthday.  It was a day that the kids and I, and I am certain Steven as well, had hoped and dreamed about.  Making it a year seemed a milestone that, this winter, seemed almost unreachable.

Weeks, marked off by trips to St. Louis, passed and gave way to months...and now we have found ourselves at the year mark.  And it seems surreal. 

*****

A few months after Steven's first transplant, I naively thought about all the ways we would celebrate him making it to a year...  I wanted to include everyone that had supported us and helped us and cheered us on along the way.  I wanted each and every person to be able to be thanked, appropriately, by us.  I wanted us to celebrate the amazing care, concern and generosity shown to us by others, AND celebrate Steven's good health.

However, as we now know, that milestone wasn't to be reached, and a lesson was learned. 

Even after seeing first hand the fragileness of life, I had, only months removed from a hospital, began planning the future as if it were guaranteed.  Of all people, I should have known better.  So much better.

However, I think that this is a flaw that most of us have.  We are surrounded with news stories depicting tragedies everyday.  We all know someone whose life was altered suddenly, without warning.  And yet, we get up each day and expect to do the same tomorrow.

I am trying to be more aware and appreciative of each moment, regardless of how ordinary it is.  Months went by that I longed for ordinary, and now, I am choosing to embrace it.

*****

As Saturday approached, no parties were planned.  The year mark was ushered in quietly, but with incredible thankfulness.  As I woke up next to my husband, I turned to him and wished him a "Happy Re-Birthday" and thought of how different the view was, one year later. 

Steven got up and started getting ready for the day ahead. 

You see, it is appropriate that on "Steven's day", the kids were the center of our attention and efforts as Steven wouldn't want it any other way.  Our kids have always ranked Community Days just under "Christmas and birthdays" when it came to excitement and fun and incidentally, Conway was celebrating Community Days this past weekend, at the same time we, as a family, were celebrating Steven reaching his first big milestone. 

We hadn't been able to go with the kids to Community Days for the previous two years, as Steven was in the hospital both times.  This year was special as we were able to, once again, share this beloved tradition with our kids.



Lakyn and I sat with family and watched the parade, waiting for Steven and Blake to make their appearance.








Blake had recently purchased his own tractor with money that he had made selling his calves and was extremely excited to show it off at the parade.  Steven rode beside Blake on an axel, allowing Blake to sit tall (and independently) in the driver's seat.  As he drove past, enthusiastically waving at everyone, you would almost think that he was running for office, and I couldn't contain my smile...   I joked with Blake about wearing out his arm waving, and he said he couldn't help it..."everyone is just SO nice!!"

And he is right.  They are.  If we have learned anything these past two years it is that, most people, are SO nice.


Of course, it wouldn't be Community Days without a turtle race and Steven had collected turtles for a week.  In fact, Friday morning he retrieved one and it "bailed" off the back of his truck as he was bringing it home.  Luckily we found it, in the driveway, and it's escape attempts were unsuccessful.



Lakyn was unsure whether or not she would be considered "too old" to participate, but picked a turtle just in case.  Luckily there were no age restrictions, and Lakyn wasn't too old, therefore we figured that Grady wasn't too young.  This worked out nicely for Grady, since his turtle won it's "heat".  At six months old, he made a smooth $6 in the turtle race, which wasn't too shabby. 



Blake's turtle also won it's race, which increased his spending cash by $6 as well. However, that didn't last long since there is always something to spend your money (and your parent's money) on at Community Days.




As the boys loaded up to head home and rest a bit before coming back that evening, Lakyn and I bought a funnel cake and decided that it would be our "re-birthday cake".  We ate it on the way home, following the boys, and our friends, Jerry and Sharon, the whole way home.  The sight was something I enjoyed, and appreciated.  


Lakyn even climbed out the sun roof to capture the moment.
 

And, of course, returning home never gets old.
 
 
 
*****
 
Later in the afternoon, when we returned, Lakyn, who had been working at a booth raising money for her class trip to DC, continued to make sales.
 

 
Then, while taking a break, she walked over to me, in front of her friends, and gave me a hug - a good, long hug.  Being in no hurry to break apart, she held me, or I held her (I am not sure which), for quite some time.  It didn't escape my notice that my girl...my baby girl, was as tall as I was. 

In that moment I wanted to cry at the realization of the all the things she had been through and the woman she was turning into, and I wanted to curse my inability to make time stand still
 
*****
 
Later that evening Blake asked me if I would ride the carousel with him, and I agreed.  My heart warmed as he grabbed my hand and I couldn't help but realize that I am already on borrowed time.  The fact that he hasn't already became "too cool" or "too big" for this is surprising, and I mentally vowed to imprint the feeling of his hand into my mind.  And heart.

We waited in line and discussed which animal we wanted to get, and I decided that I wanted to ride the chicken.  Although he was previously wanting the lion, he told me he wanted me to get to ride on the one I wanted....  As if it mattered.  It was as though my sweet boy didn't realize that I didn't care about the carousel ride at all...I just wanted to be with him.  Especially because he wanted to be with me.
 
As the carousel took off I was surrounded by music from my high school days.  Being physically unable to refrain from singing along with a song I know (it has to be an actual medical condition), I belted out the song while riding the carousel and found Blake just looking at me as then leaned over and rubbed my back.  I smiled at him and asked if I was embarrassing him.
 
He claimed I wasn't, although I think he might have been trying to spare my feelings.

As he continued to rub my back and shoulders and look at me, I asked him why he was staring.  He told me, in complete earnest, that he wasn't quite sure what he should be doing at this time...  He didn't know if he should just watch me, or attempt to sing with me - even though he didn't know the song, and had decided that instead, he would just rub my back as I sang.

And so he did.

 

As the ride came to an end, he leaned over and said, "I love you, momma", and gave me a kiss right there on the carousel.  My heart exploded into a million pieces.  I wondered, had I not missed this tradition with my kids - two years in a row, if I would have taken the time to go stand in line and ride this child's ride with my son.  Would I have stepped back and taken note of the importance of his invitation?
 
Honestly, I don't know.  In fact, I don't know if Blake would have asked me to ride with him had our last two years been anything other than what they were.  I don't know if Lakyn would hug me and hold on, despite being surrounded by friends.  Maybe they would have already outgrown this need of me.  Maybe they wouldn't understand and appreciate the presence of their parents. 
 
I will never know what my children would have been like had our lives not been altered the way they have.  Has it changed them for the better?  The worse?  I am not sure. 

I do know, however, that they have a daddy that will never take for granted his time with them and a mommy who is trying her very best to slow down enough to let them love her...  I can not imagine having missed this weekend with my kids, and neither can Steven.

This time together was the very best "re-birthday" present ever and I hope this tradition never ends.

 
Community Days -2007
 
 
Community Days - 2009

 
Community Days - 2009
 

 Community Days - 2010


  Community Days - 2010
 

Community Days - 2012
 

Community Days - 2013