Wednesday, September 04, 2019

1826 days

Today marks five years since we walked into a hospital, unaware that it would be over a month before we would walk out...and, essentially, straight into another one.  We spent roughly 190 days in a hospital and 113 days in a duplex near the hospital. Or, roughly, 302 days away from home.

So much has happened in five years.  


Steven has been in remission six days short of four years. (FOUR YEARS!) This is not something we take for granted. In fact, when I weigh everything against where we have been, it’s easy to say “We are doing good!” or "Steven is doing good!" when asked how we are.   

Although there might be a handful of things, at any given time, that we are struggling with due to the leukemia diagnosis five years ago, we both know that life at home, free of cancer, is doing good.  When we say we are "doing good", we really DO mean it.  We both have been worse, in comparison.

However, I have recently felt like I have done a disservice to others by omitting some of the struggles that this journey has held. "Doing good" could be misleading to some.  I have been told by a few people in the oncology nursing field that they have directed people to, or printed, parts of my blog for other patients going through what we have. The people that have read it or followed us along on our journey might have been left wondering where life has taken us, or believing it held a fairy tale ending.  

I have also had several people reach out to me in the years since Steven’s illness. Most were looking for advice, some were looking for understanding, and others were just happy to find someone who had walked a similar path as theirs.

Because of this,  I don't want my lack of updates (on Facebook or this blog), regarding Steven’s health, to lead anyone to assume there is some fairy tale ending.  

It is untrue and would be extremely detrimental to believe this.

Let me explain why. When you are in the throes of this disease, or any other struggle life throws at you, you can not help but compare your progress, or lack of it, to others. 

With cancer, everyone I have met on this journey has admitted to measuring themselves against people who have walked the same path.  You look for correlations where there might not be any, and signs that you might have a similar, or dissimilar outcome. At a time when your future feels so uncertain, you try and find anything that can help you navigate it. For someone to believe that we just went back to living a "normal" life free of any lingering effects would be wrong, and I wouldn’t want anyone to think that they are alone in their struggle. 

They are not.  

If we have learned anything over the last five years it is that this disease and the treatment associated with it, PERMANENTLY changes your body and mind. In fact, doctors have told us exactly that.  You don't just "get over" cancer.  Or two stem cell transplants.  The effects of it all stays with you.

For Steven, it is easy to identify the physical parts of his body that don’t work like before. His hips hurt. His knees hurt. His eyes are dry and inflamed and sometimes his vision is bad. He is weaker and has less stamina.  An ingrown toenail is cause for an emergency doctor visit.  As is a lingering cold.  Physically he is not the person he was before. 

The physical changes were/are easy for him to recognize. He can look in the mirror and see the proof.  

The mental changes?  That is a story all in itself.  The rest of the story, actually.  A story for another day.


When I think about where we've been...I also think about what we've came through.  I remember the statistic that was given to us by a nurse.  We were told early on that the vast majority of couples that had a spouse going through Steven's diagnosis ended up divorced.  

I was appalled...and a little judgmental.  Five years has taught me many lessons.

Don't judge what you don't understand.  This road is HARD.  You change.  They change. 

Did I mention that it is hard?

However, for me, it is worth it.  Every morning that I wake up with my husband next to is worth it.   

(Not to mention it is affirmation that I haven't killed him yet.)

(Despite cancer, some things never change.)

(Just kidding.)

(Kind of.)     :)


This road has been a struggle and I have no doubts that we haven’t seen our last. But there is hope. And help. And support.  And my prayer is that our story gives others hope.

If you are traveling down a similar road, don’t give up. Think of all you stand to miss. 

It doesn't have to be a struggle caused by cancer.  There are plenty of curve balls that life can throw your way.  I think it is safe to say that most of us, if not all of us, are not the people that we once were.  For a variety of reasons. In a variety of ways.

God has used the struggles of this last five years to build a relationship with me that I didn’t know was possible.  He will do the same for you. 

The support that has came from a wide-reaching community is one my mind could not have fathomed five years ago.

I will be the first to admit that I don't have it all figured out and I am as far from perfect as they come. I’ve been known to “cuss a little”, I love Kid Rock, and as mentioned before, at times my patience runs thin. 

I am too quick to judge others and myself.  

The list goes on and on. Ask anyone

However, despite my long list of flaws and inadequacies, I have never seen God as clearly as I have the last five years.

Whether you are a patient, a husband, a wife, a caregiver, a friend, a mother, a father, a son, or a daughter...don’t give up.  Don't grow bitter.  Don't turn away from those you love, turn towards Him.  Each morning God allows you to wake up is yet another day to continue on His work in progress.  A day to grow closer to Him and to His will for you.

We aren't done until He says we are...  And I am so thankful that 1826 days ago He wasn't done.

Monday, September 03, 2018


Tomorrow will mark four years since we walked into a hospital, unaware that it would be over a month before we walked out...and then, essentially, straight into another one.

The knowledge of where we’ve been and the struggle associated with getting to where we are now never leaves my mind. It doesn’t leave Steven’s either. No doubt it was this fact that brought on the conversation we shared one night before bed. As we were lying there, silently waiting for sleep, Steven said “I am so thankful that I have gotten to see the things I’ve seen. There was a time I didn’t believe I would be around to see them.” Lakyn’s 8th grade graduation, ballgames, the FFA award ceremony, Blake growing and becoming less of a boy and more of a man were a few of the things listed. And then he paused. Almost as an admission of guilt, Steven said, “There was a time that I felt so bad that I thought that the best thing that could happen would be for me to fall asleep and not wake up. I’m so thankful that I am still here.”

I physically felt the heaviness of his statement. It was a weight sitting on my chest. I don’t know if the weight was due to the realization of Steven’s struggle during that time, or the remembrance of my own.

I held onto him and said a prayer for the future and what it would hold for all of us, and I thanked God that he has allowed my husband to wake up each morning.


Thank you all for your continued prayers, support and concern for my family.  There is rarely a day that goes by that someone doesn't ask how Steven is doing...and, as I stated before, his diagnosis was four years ago.  You still care.  That fact does not go unnoticed.

This community is good.  So very good.  And you have all done more for me than you could ever know.

I have never heard God's voice so clearly, or felt as close to Him, as I have the last four years.  I don't think God moved...or spoke louder.  I think I just listened closer and more intently.  And you, my friends, made it impossible to not see the hands and feet of Christ at work.  You ministered to us.  Your actions preached a sermon.  Your love healed wounds.

I will never forget what we've been through, and honestly, I don't want to.  

This experience has changed me.  It continues to change me.

And I thank you all for that.

Wednesday, April 05, 2017



Not something that I generally seek out or look for.  I am a creature of habit and routine and I enjoy it.  However, a little over two years ago my life was forced to change.  I wasn’t given a choice.

I remember writing about struggling to sort out God’s voice and wondering how you would know if and when you heard it.  I have not developed an ability since that time and am still inherently human and inherently flawed.

Go figure.

God’s voice doesn’t boom down from the heavens speaking to me audibly and loudly, leaving no doubt of His will.  I still pray and, at times, even though I know God hears, I even find myself giving God permission to pass them over for more important and pressing things.

As if that is how God works…

But why would God care about the day to day issues of my life?  Ok.  Maybe I can sometimes understand why he would care about Steven and his health and life.  Yes.  Those things are far reaching and affect our children… But the daily details of our living?  Does He care to hear about that?

I believe He does.  More and more.  Each and every day.  I believe He does.


I have described myself as having “prayer ADHD”.  My prayers aren’t exactly formal, and I don’t always sign on, or sign off.  My prayers tend to be more open ended conversations, generally one-sided, that happen all throughout the day. 

*If I hear of someone that needs a prayers, I start mentally speaking to God on their behalf in that moment.  It might not be pretty, or fluid, or even…reverent.  It comes off as more of a plea.

*If my morning goes smoothly and things seem to just fall into place, I thank God for over-seeing my struggle and helping me out.  (You know, sometimes just getting the kids in the car, on time, and to work/school without someone wanting to cry is a miracle in itself.)  

*I talk to Him about relationships or concerns.  I ask Him to shut my mouth when I need it shut and to open it when it needs to be opened.  I ask for him to intercede and help others when they, too, are struggling.

In short, there is a lot of mental, one sided conversing that goes on…

I imagine God shakes His head a lot at me.

Yes, maybe due to the “mental noise” that I have going on in my head, most conversations ARE in fact one sided.  However, often times God is still gracious and shows me the answers to my prayers quietly in the coming days.  They may be shown to me in the love of those around me.  The answers may be shown to me by witnessing an example of a behavior (and the often unseen ramifications) of a behavior that I don’t want to exhibit, but may have found myself tempted to.  And sometimes they are shown to me by His silence.

Yes, the answers usually come, but rarely are they direct or announced.  Most times I have to look for them…

However, when my “one sided thought conversing” is interjected with an extremely foreign thought, I take note.  And I wonder…was that God?  Is he telling me what to do?

There have seldom been times that the thoughts were SO foreign that they literally stopped me in my tracks, but it has happened.  These moments stick with me and, well, me being me, I have to think about them.  Sometimes I really don’t want to.  Sometimes what I feel that I am being asked to do isn’t comfortable.  Sometimes the thought placed on my conscience is sobering.  And sometimes what I am asked to do requires a huge leap of faith.

And I have to ask myself…do I have faith?

The answer isn’t as simple as I would hope for it to be.   Faith is something that is easy to cling to if it requires nothing of us.  However, any time there is a challenge, or something that is uncomfortable, I believe it is in our nature to look for a loophole.  When it comes to knowing with certainty that you have heard God’s will, for me, I have found there is no way to know without a doubt.  This alone leaves a little wiggle room for you to give yourself permission to take a pass on acting on something you believe you are called to do.  You can actually justify your actions regardless of what action you decide to take.

Faith also means that IF you do act, you can’t bail out when the going gets tough.  God never promised us that the path He called us to walk would be easy…just that it would be worth it.

Believing that is faith.


“If today you hear His voice, harden not your heart.”

While at church a few weeks ago we had the previous verse as our Responsorial Psalm.  For years I had heard it and not thought much about it.  I think at first glance you would think, “Why would my heart ever harden if I was to hear God’s voice?  I love Him.”  But I began to think of it differently.  I think the earlier justification that I wrote of could potentially be a hardening of our heart. Only we know our true motives…and those motives don’t have to be evil to be against what God is telling us to do.  Just different.

The twinge we feel when we see a homeless person…but then we tell ourselves “well, they are probably making more money than I am just by standing here begging on this corner”.  Is this a hardening of our heart?  Or are we just being realistic?

I’ll be the first to say I don’t know.

That is an example that we may not come into contact with very often in our small rural town…but we all have examples that are personal to us.  You probably have scenarios that apply to you and your life and justifications that you have made.  Or maybe it’s just me.

I will say that with many things, upon examining my own conscience, my own behavior, and my own environment, I have found that change has been necessary, and in most instances what was best for me, my family, and my relationship with God.


Recently, I have found myself making voluntary changes in my life and I am trying to wrap my head around this.  I am unsure if all of life’s shakeups caused by Steven’s illness has made me much more brave, or if maybe I am just hearing more clearly.

Either way, things are definitely changing.

The last two days I have been out of town training for my new job and learning a wealth of information about the systems in which I will work with.  I am currently sitting on a bed in a hotel room typing on a computer. (A hotel, not a hospital!) I have gotten to know several other women from other school districts and I may have been the dork that called home to Lakyn and said (much like a five year old)  “your mama made some new friends today!!!” 

 Yeah, God isn’t the only one shaking His head at me. 

But that is ok…because I am convinced he also smiles at me sometimes too.  Why else would the timing of this trip…which has been scheduled since my first week in January, coincide with the first week of Steven being off of steroids-again?  Steroids that he was NOT on in January?  (Oh how I love/hate that drug!)

I hear that absence makes the heart grow fonder…and mine was already pretty fond of him!  Good thing I will be home tomorrow night!

Please keep praying for Steven and for continued improvements with his health and mobility.  You have all been instrumental in us surviving all the changes we have endured the last two and a half years and have, whether you know it or not, encouraged us to be better and do better.  You have all been amazing and supportive, and we wouldn't have made it this far without you.

Your prayers have caused...CHANGE.  Change in both Steven's health and in us as people.  And, yes, God only knows there are still things that this girl needs to work on.  Many things, in fact.


Never forget how powerful your prayers are.

Wednesday, October 12, 2016

The View

As I laid there in bed, it felt as if his arm was burning into my skin.  He felt so hot.

My heart started racing and I recalled the last time when Steven's skin burned mine while lying in bed.  May 2015.  A trip to the emergency room and some blood work later and we learned he had relapsed.  As I felt my stomach start to turn, I was reminded that Steven had told me that he had gotten physically ill twice this week, and he had blamed it on the pain meds.  In May 2015, Steven had been vomiting intermittently leading up to his relapse...and the doctor later blamed recurring disease.

Recurring disease.  Disease that had showed up only 8 weeks after a clean bone marrow biopsy.

In a time when my mind had started focusing on the battle in front of us-hip replacements, I think I had grown too battle worn to focus on the reason for this war.  My heart rate kept increasing and I thought I would be ill as I felt the last two years play through my mind like a movie reel.  I counted back the weeks since Steven's biopsy and knew we were right at the six week mark.  Six weeks...more than enough time for things to change. 
Unable to stand the anxiety anymore, I sat up in bed and turned towards the sleeping Steven.  I put my hand on his forehead, and then his cheeks, searching for a confirmation of the fever I feared was there.  He stirred and turned away, in an unconscious effort to remove my hand from his face.

His face felt cool.

Steven continued sleeping and I knew I couldn't.  Lying there in bed my mind would not be silenced.  I went into the living room and sat in the recliner, in the stillness, and took in my surroundings: my home. 

My prayers for Steven's continued health turned into prayers of thankfulness that I was sitting in my home, with my children in their rooms, sleeping soundly.  I also prayed, with fear clenching my heart in a way that I hadn't felt in a while, that God would spare us all from revisiting the hell that we had been through two times before.


I am unsure as to why I have experienced a resurgence of the anxiety, fear and depression lately, but I am sure some of it is self induced.  As I wrote before, sometimes our minds are our own worst enemy.  Expectations should never be made because they only set you up for failure, and yet time and time again, we have them.  Expecting life (and Steven and I) to get back to normal is probably the biggest culprit.

Steven's personality is altered by the withdrawal of prednisone. (One more week and he will be completely off of it.)  I think this is a fairly common occurrence, and he is not alone in this phenomenon.  However, surprisingly, he is unaware of the change and says he doesn't notice the increased agitation.  He knows it's happening because those of us that live with him have told him...and we (halfway) joke about keeping our distance.  Sometimes this exacerbates the problem, but it is a lose/lose situation either way.

Positivity that once was Steven's trademark has been traded in for negativity.  His normal laughing demeanor and mischievous eyes, turn harsh and cool.  No conversation goes without him putting this new stamp on it, which, at times, leaves me avoiding conversation entirely.

I know that this will pass, and that the pain he is experiencing magnifies it all.  If I had severe pain that prevented me from being who I have always been, I would not be the most uplifting person to be around either. 

I do not fault him for any of this.

But I do feel it.

And I miss my husband...even when he is lying next to me in bed. 

I do get to see the "old Steven" when he is visiting with friends, mainly because I think it's easier for us to slip into a different persona when dealing with those that aren't privy to the ins and outs of our day to day occurrences.  I believe this is normal and, honestly, I am glad that it is.  Not only does it allow me glimpses of Steven's humor and charm, it reassures me that he is still Steven.

And I so love Steven.  I do.

In sickness and in health.


Please know that this is, in no way, an attempt at gaining sympathy, or painting a picture of "poor, poor pitiful me."  (Anyone who sees me and all my excitement at the kids ballgames can attest to the fact that I am not a fading flower.)  In fact, I don't really know why I needed to even put this in words other than it being my mind's way of sorting out all the clutter that is inside it.  I had a nurse in St. Louis once stop me and explain that she had found my blog and she asked if she could print off certain posts for family members of her patients.  She explained that she believed it would be beneficial to them to see someone that is on the same path, and to gain comfort in knowing they weren't alone. 

I don't necessarily believe that this post is one of those posts, but who knows?  It might be.  If I only shared the upside to the transplant/recovery process, it would be a disservice to anyone who might have walked a similar path.  There are downsides, albeit in contrast to leukemia, they don't hold much weight. 

This process isn't one that is over once you hear the word "remission", although how amazing would it be if it were?  This is a new life for us.  A "new normal" to quote an overused term.  Medications, doctor's appointments, restrictions, etc. is part of our day to day life, and we are barely 40.  Although necessary, there is nothing normal about this process...  The transplant, the chemo, the medications, the effects?  None of it normal.

But we are here.  And we are still moving forward.

One thing is certain: the view up ahead looks a lot more promising than the view looking back.

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 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