Sunday, December 28, 2014

The most wonderful time of year

The week before Christmas, and the week after transplant, was the toughest week Steven had experienced since finding out he had leukemia on September 5.  The first part of the week, he felt decent, but was fighting a low grade fever.  That, coupled with mild nausea, kept him in bed the entire day on Monday.  Tuesday, he ventured out a bit more, but stayed in bed most of the day.

Wednesday it felt as if we had experienced the worst of it, and we made our way into the halls and walked much of the day.  The fever had broke and the nausea had left and I honestly felt like we had made it over the hump, even though others warned that there were ups and downs.  In my mind, they didn't know Steven.

However, when Thursday rolled around and the fever returned, so did a multitude of other issues.  High fevers, with no determined source, lack of appetite and increasing agitation towards me, were a few of the things he was experiencing.  I could see the Steven I knew and loved just transforming in front of me.  I wasn't sure if he just felt that bad, if the meds were wreaking havoc, or both.  Either way, what I was watching was setting me on edge and I was helpless.  The doctors and nurses had told Steven what he needed to do in order to help him improve and speed up his recovery process. Drinking, walking, and sitting up instead of lying down, were on their lists and they recruited me to help them "encourage him".

However, he didn't listen to me, or them, and I knew we had problems.  For those of you that know Steven, you know he is someone who likes to take things to the "next level".  He does nothing in moderation, everything is an extreme...and here he was, not even trying.  This was not him.  In addition to the fear that his complacency had given me, I was also finding myself at the forefront of all his frustration.  He was not nice, and at times it seemed as if he was looking for a fight.  That alone wasn't fair.  What kind of wife would fight with her husband who is fighting for his life?  Yet, there he was, time and time again just baiting me and it took all my effort to bite my tongue and take what was dished out. 

I knew what I was experiencing was normal, as indicated by many conversations with other wives and caregivers in the pantry on our floor.  A constant flow of stories of loved ones who were lashing out at those who were standing by their side filled the room.  We were all in the same shoes, and although there was comfort in that, my heart was still heavy and felt very alone.

****

As they took Steven to have a CT scan on his chest to verify that there was nothing more going on than what met the eye, I went to the hall to take a much needed break.  I ran into Lynn, who coordinates discharges.  We had met Lynn on our first day in the Stem Cell Transplantation Unit, and I knew that she was Megan's mom.  That first day I had told her that her daughter had been a wonderful nurse and was an exceptionally caring person.

However, that day in the hall I told her about Steven, and his current physical struggles and the fear that I had. The conversation wasn't as positive as our previous ones and I don't think she was surprised.  Another patient, a young girl, that I had become familiar with, and had checked on when her family was unable to be present, had rapidly declined.  Steven and I had seen her three days before walking the floor with her boyfriend, well on her way to recovery, and the day before I had found that she had been placed on a ventilator.  The building of all of these anxieties was written all over my face, and I was exhausted, emotionally drained, and mentally beat.  The tear tracks down my make-up were just one outward sign, but the biggest sign was probably my defeated attitude.

Lynn was amazingly encouraging (just like her daughter) and told me that what Steven was physically experiencing was typical and not to be alarmed.  She had faith that he would be fine, as would the other patient.  It was towards the end of our conversation that she mentioned that I should go see Megan on the 8th floor and that she had some good news she could share.

I knew immediately.  She was expecting and I asked her mom if I was right.  She nodded that I was.

What her mother did not know was that Megan's news was another sign to me to keep the faith.  As I mentioned before, Megan was the one that had shared with me her story of praying a novena to St. Therese.  What I didn't share was that her novena was said out of her desire, and struggle, to become pregnant.  She got her rose, and she got her baby.

And, now, she was expecting another.

I went to the 8th floor and shared with her my excitement.  Whether coincidental, or not, it was a note of positivity that I needed.

*****

I returned to Steven and over the next few days he continued to have issues that came as a result of his fever.  When told that he needed to drink more fluids because his blood pressure was too low, he told them it would be easier to hook him up to an IV.  (This was NOT Steven.)  When told to sit up so that he would be required to breathe deeper, he told them just to put him on oxygen.  (Completely NOT Steven.)  Any efforts I made to encourage him to do what the nurses had asked was met with spite and venom and I was at a loss, and the nurse would meet my eyes with understanding in her own.  She urged him to take action and told him that preventing problems, instead of treating them, would be the best.

However, Steven was eventually hooked up to both, as well as a heart monitor, which detected an abnormal heart rhythm due to the excess fluids and unbalanced levels.  The excess fluids were due to the IV fluids they administered when Steven refused to drink, and his oxygen was low, because when refusing to breathe deeply, and sit up, the fluid settled in his lungs, as well as his body.  As the troubles mounted, my anxiety and helplessness skyrocketed.

*****

The next morning, in a complete surprise, Jammie and Jane knocked on the door.  When I saw them I immediately burst into tears.  I felt like I had been sent back-ups and that I was no longer the only one fighting this battle with, and for, Steven.

Later in the day my mom and dad showed up, ready to also take the legendary "bull by the horns".  He now had a room full of people urging him to do what he already knew he should. 

Although not immediate, it was that day that Steven's condition, and morale, started to improve and it was a visit by Lakyn, that got him up and moving.  She wrote daily goals for him on the white board in his room: 10-15 laps a day, 3 good meals and 45 ounces of water.

My mom later told me that she overheard a phone call that Lakyn made to her daddy the day after she visited him in which she told him, "God has gotten you this far, it is now time for you to do your part."

That day also held the good news that the young girl I had been keeping track of, and worrying for, had improved and been taken off the ventilator. 

It seemed as if God truly had gotten us all this far...

*****

Days later the fever had broke and Steven's oxygen level was staying above the critical level for the majority of the day.  The doctors started talking discharge and Steven, knowing how important it was to be with the kids for Christmas, upped his ante. He walked almost two miles in an effort to prove to the doctors how ready he was to be kicked out.

While I worried that he was overdoing it, I was overjoyed to see his fighting spirit return.

*****

Wednesday morning, Christmas Eve, Steven woke and, once again, had a low oxygen level.  He was on oxygen for over an hour, but off of it by the time the doctor made his rounds, where they found Steven up and already walking the halls.  They consented to releasing him.

I immediately disassembled the room and took load after load to the car.  I went to the duplex and put up our Christmas tree, and Christmas lights, again, because I wanted the kids to have a Christmas as close to normal as they could.

I returned to the hospital and the kids arrived around 2:00 pm to find that daddy was getting out.  They were overjoyed and Blake said it was a Christmas miracle of sorts.  When the nurse made her way in around 3:00 p.m., Steven signed the discharge papers, and she took his last set of vitals.

He had a fever.  100.5.

Blake started crying.

The nurse said she would go speak with the doctor and it was later decided that they would retake his temp at 5:00 p.m. and if all was good, he could still go.

Blake couldn't stop crying.  I explained to him that we needed what was best for daddy and that it would be fine either way. 

He still cried.

I told him that crying wasn't going to change anything and that daddy felt badly already, because he wanted, more than anything, to be with his kids.  I told him that crying didn't accomplish anything and to please stop.

He informed me that it was accomplishing something: "It let it all out."

It was then that I started crying.

*****

Mom and Sarah picked up the kids, and Steven and I waited for the moment of truth.  As I sat there in his room with him, I honestly didn't know what to hope for.  As I had watched Steven with the kids, and his limited participation with them, I knew that he still wasn't well.  He had napped off and on in their presence and he generally soaked up every moment with them.  I prayed that God would decide what it was that would be best. 

I knew Steven was depressed without his kids, and wanted time with them, but I knew that I would be tied in knots, knowing that he still wasn't out of the woods.

At 5:00 p.m. he showed no fever and we headed towards the duplex, and the kids.

*****

I was a bucket of nerves and couldn't hide my worry.  Deep down, I felt like we would be returning to the hospital.  I wanted my husband "home" but I wanted him healthy more. 

Although mom had cooked a great meal, Steven barely had any.  In fact, he hadn't moved from the chair that he sat down in the moment we had arrived.  When I tried to feel of his forehead, he pushed me away, stating that he hadn't even been "home" two  hours.  However, I knew that he was feverish, I could tell just by looking.

As I watched my babies in their childlike joy anticipating the arrival of Christmas, I couldn't stop crying.  I missed them so much and I actually hurt with the knowledge that I probably wouldn't be there with them on Christmas morning.  I couldn't hold them close enough as they both hugged my neck.

I told my sister that I felt we would be returning to the hospital, and that I was going to take a shower and pack our bags.  While in the shower she peeked in the bathroom to report that she had taken Steven's temperature and it was already up to 100.8.  Once reaching 101, we were required to call and be readmitted.

I got out of the shower and told the kids that there was a good possibility that we might not be there in the morning.  I softened the blow by encouraging them to open the gifts that Steven and I had got them, so that we could enjoy it with them.

*****

As predicted, an hour after everyone had went to bed, Steven's fever reached the cutoff mark of 101.  We returned to the 5th floor and IV antibiotics were immediately started.  The kids joined us around 9 a.m. the next morning, Christmas, after finding that Santa had found them...even in St. Louis.

The hospital room seemed to close in on everyone, though, and Steven couldn't even find the energy to enjoy the best gifts of all-our kids.  Everyone had obligations the next day and had planned on departing early in the afternoon.  I left the kids to spend time with their dad while I ran back to the duplex to help everyone load everything up, and to grab some supplies for the hospital. When I returned I found that Steven had slept the entire time the kids were there. 

I knew then and there that although he had fought me tooth and nail about coming back to the hospital, and had blamed me for ruining Christmas, I was completely in the right in doing so.  Steven would never sleep through precious time with his kids unless he felt really bad.  Really, really bad.

Unfortunately that knowledge, and affirmation, didn't comfort me much as the kids left to go back home, just a little over 24 hours after they arrived.  As the darkness started settling in around 4:00 Christmas night, I could almost feel the hospital room fill with self-pity and sorrow as I sat on the couch, watched Steven sleep, and wallowed in the loneliness.  I couldn't stop crying as I watched the cars on the road below go by.  I imagined all of them filled with people having wonderful times with their families.  I then looked towards the lights of the ice skating rink in Forest Park and thought about all the joy that the skaters there would have, certain that some were fulfilling a Christmas tradition many years in the making.  The noise from the room next door was one of laughter and joy as a roomful of people enjoyed each others company.

And here I was, in a hospital room, alone with my sick, sleeping husband, who was mad that I made him return.

The pity party I was having was invite only and I was the only guest.  It was a party for the ages. The sorrow I let fill my soul was weighty.

Then, moments later, a text came through wishing me a Merry Christmas.  And another.  And another.  Some offered kind words, others offered prayers.

It was then that I made up my mind that the pity party had been cancelled.  Sure.  It would take awhile for me to tear down the dreary gray party streamers, and pick up the "woe-is-me" confetti that littered my mind, but I was determined that I would do it.

I started by thinking about all of the many blessings that I had received this Christmas.  Blessings so numerous that I couldn't even begin to try and list them.

I fell asleep determined that I would keep that lengthy list, not my list of sorrows, at the forefront of my thoughts in the days to come.

*****

Coincidentally, or not, the next day, despite overwhelming nausea, I could tell Steven was better.  A lot better.  And today, and the day before?  Even better.

The Steven I have seen the last few days is the Steven I have loved, what seems like, my whole life.  I have seen his fight.  His determination.  His humor.  His character. 

In the last few days his fever has not returned.  His oxygen has came up, and his cell counts have too.

Today they are talking like our release may come as soon as tomorrow, and I feel peace about whatever they decide.  I believe that the Steven I see emerging again will do whatever it takes to continue to recover.

****

As I thought about the previous week and his resistance to me, to the nurses, and to suggestion in general, as well as my reaction towards his resistance, my thoughts were seemingly drawing the connection to our earthly will, and God's "suggestions" for us.  God has outlined many things in the Bible that He wishes for us.  He has also outlined many actions He wishes us to take, or not to take.  I thought about how often times those things He wishes us to do, are not necessarily the easiest.

However, just like the nurses that knew that the harder route would prevent future troubles, God knows that sometimes taking the more difficult path, or making the least desired decision, can sometimes save us in the end.  Save us tears.  Save us heartache.  Save us, in general. 

I know that there have been times that I haven't chose the path that God desired me to choose.  I also know that it is not God's nature to be resentful, or angry, about my faltering ways.  All that matters is that I eventually tried to pick myself up and do the right thing.  In fact, sometimes, I believe, it takes being brought down by our own decisions, actions, or lack thereof, to learn to take the advice, or suggestions, of those who know better.

Or the One who knows all.






Monday, December 22, 2014

Miracles...

Originally written November 2006 - but, when considering the time of year, and our current situation, I thought it was worth reminding myself of God's many graces-large and small.

*****
In 1997, Steven-who was my boyfriend at the time-rode bulls. He had done this since 1994. I was used to it and there was no point trying to change him.

He loved it and that was that.

However, on April 4, 1997 we went to a rodeo about 2 hours from home. Robert, a good friend of ours went with us, and, as usual, we were having a great time. When Steven was in the chute I was no more nervous than usual. The chute opened and out he came, doing his thing...experiencing his high.
 
Towards the end of his eight seconds he got flipped around. Normally while riding (for those who are unfamiliar), the rider has one hand in a rope and his free arm up, body facing (obviously) the front of the bull. But somehow, during the ride, Steven was swung like a helicopter around, with hand still in the rope and his body horizontal to the ground, head facing the rear of the bull. He was jerked down on the bulls horns before his hand finally broke free.
 
While watching this, I really didn't feel like anything major had just happened. He wore a protective vest, so I felt like his chest and abdomen would have been cushioned .....but something was wrong. He just laid there in the arena. Barely moving. My heart began racing and I just thought...."I have to get out there".

 
Now the primary reason for my reaction was my husband's attitude. He was not, and still not isn't, an attention seeker. He always kinda joked about the riders who seemed to constantly get hurt. Whether they laid on the arena floor for a few seconds or dramatically limped out, they seemed to swell up with the cheers of the crowd. Magically cured. He had always told me. "If I lay on the arena floor, you will know I am dying".


He was a man of his word.
 
I went out there and knelt down beside him. "Are you OK?", I asked. It was ridiculous to ask.  I knew the answer and I knew he would lie. "Yeah," he said, straining to speak, "just give me a minute." After what seemed like an eternity he allowed himself to be helped out of the arena. The paramedics looked at him and said that he might want to get checked out at the local hospital and offered to take him.....it was up to him.  He stubbornly declined, stating that we would drive ourselves.


Shaking like I have never before, the three of us rushed to the car and began our 20-30 mile trek to the nearest community hospital. I was unfamiliar with this facility or its reputation, but to get to the nearest reputable hospital was at least an hour away.
 

I tried calling his parents, my parents, ANYONE to let them know what was going on, but my cell phone couldn't get a signal - ON A MAIN HIGHWAY! We were going over 90 miles an hour and Steven sat silently beside me. I kept asking him to squeeze my hand so I would know he was OK.

(Steven later told me that during this drive he kept thinking to himself: "Every breath that you can take will keep you alive that much longer".)

*****
For some reason that I can't remember, we had taken his parents car that night. Apparently going 90+ miles an hour can cause a car to overheat-which it did. And, despite desperate pleas for it to keep going, the car eventually died. I guided it to a stop on the shoulder of the highway. Robert and I both knew it was imperative that we get Steven to the hospital immediately.


He was yellow and not doing well.


Robert got out of the car and began waving at people to stop.


No one did.


We couldn't blame them. There had been a series of murders in that general area of the state and authorities were conducting a widespread manhunt. Nobody wanted to pull over and let a stranger into their car.
 
However, after what seemed like hours, but I am sure it was only minutes, someone stopped.


Actually, two someones stopped. A couple, I believe sent by God, stopped and let Steven and I in their van. Robert stayed with the car, and I told him I would get ahold of someone and send for him. Steven was, in my mind, deteriorating rapidly, and kept saying, "I think I am going to puke!"


True to my nature, I was worried about Steven, as well as about the good Samaritan's car.   I kept silently willing him not to puke... at the very least, not in their car. I felt as if they had been so nice to stop...I didn't want them regretting their choice.


Steven, desperate at this point, yelled for the driver, to "Hurry!" "Please!"


It seemed like we hit every red light on the way.

*****
 
Finally we arrived at the hospital and they took him into the ER. He was yellow and couldn't move much and kept saying that he "felt so tight". They took a CT scan of him and came back with positive results....."It looks like you have bruised your liver. You will be fine. We are going to watch you overnight and you can probably go home in the morning." We were so relieved.
 
 
Little did we know that we wouldn't go home for over a month.
 

The night was terrible for Steven. In excruciating pain and vomiting blood, the night shift seemed incapable. We all knew something was wrong. Why didn't they?
 

Come morning, and with it a new set of doctors, they decided that since he still wasn't doing well they should run another CT scan.
 

When they returned the news was not so positive. I can remember the exact words they said: "Apparently the CT scan machine was broke last night. Your liver is not bruised it is severed. You have been bleeding internally. Actually, you should have died minutes after the impact. We do not have enough blood in this hospital to get you through surgery and you are going to have to be transferred to St. John's. We are taking you there by ambulance immediately".

I remember the feeling of the blood leaving my body.


His parents had arrived during the night, Robert had been picked up by his brother, and we all headed towards St. John's.

*****


Little did I know that God had a plan.  He knew what He was doing even when I didn't.

In fact I believe that God made sure the car overheated.
 
God broke cat scan machine.
 
God turned the stoplight red.
 
He needed to slow us down.
Once we arrived at St. John's we were greeted by the trauma surgeon. He had looked at Steven's CT scans. He told us that, generally,  liver injuries were rated on a scale of 1-5: 1 being a scratch and a 5 being totally annihilated.

Steven's was a 5.

The surgeon then informed us that he had no idea how to treat Steven. He said that the only times he had ever seen someone with a liver injury like Steven's, a "5",  they were dead on arrival. He determined that the internal bleeding had, for the time being, ceased. For lack of knowing what else to do, the surgeon was going to do nothing but wait and see, and play it by ear.

*****
 
While we were watching Steven suffer all night at a rural hospital...

While we were cursing an overheated car...

While we were panicking at every red light...

 God had taken control.

The surgeon had stated that it was a miracle that Steven was even alive when arriving at the hospital. He informed us that, had the other hospital's CT scan machine worked, they would have promptly sent him to St. John's and the surgeon, based on protocol, would have immediately "opened him up".  This sequence of events would have caused Steven, in the surgeon's words, to "bleed to death on the table".

Since almost 15 hours had passed since the accident, and the bleeding had stopped, they didn't do surgery, and, consequently saved Steven's life.

God gave us that 15 hours by slowing us down....by whatever means possible.

*****
 
Two weeks after the accident they ended up doing an exploratory surgery that went well. Two weeks after that, and liters upon liters of bile drained off of him, Steven was allowed to come home, with drain tubes still attached.
 
May 5, 1997
 
There were a few ups and downs, but I felt that if God had wanted him to die, he had plenty of opportunities on the night of April 4th.

This is when I first became acutely aware that everything isn't always as it seems.  God always knows, and nothing surprises him, but it is easy to forget, and so very easy to get caught up in life.....HOWEVER, yesterday, I was reminded of this once again.
 
*****
 
Although Daisy was only a dog, she was an integral part of our family. We loved her. And since my children were born, Daisy got put on the back burner.

I still feel guilty about this.

She was the best dog; well behaved, sweet hearted, gentle and loving. Back before we had kids, we would take her to rodeos with us. Children would come out of the wood work to play with her. I remember two times specifically that two children with Downs Syndrome played with her........a little too rough at times. But I think she knew they were special.

She loved the attention and she loved people.

Daisy was an outside dog during the day, but loved to come inside with the family at night. However, being the meanie that I am, when we built our house, Daisy had to either stay outside or in the garage. She seemed to accept this and just hung out with our stock dog, Rowdy. This change in venue seemed to cut back on how much "hands on" time I spent with her.

It seemed I was always in a rush...fixing supper, cleaning house, rushing around-always too busy to lavish her with affection for too long.

Since Thursday I have thought about how much love she showed us and how little attention she had received lately.....Poor Daisy, if I could do it all again.

As I posted before, Thursday was the last time that I saw Daisy. We had looked. Neighbors had looked.

She was nowhere to be found.

My mind created many possible scenarios ranging from someone abducting her, to the UPS man hitting her on the way down our driveway and then hiding her little body.

I know, I know, a little crazy and far reaching, but I just couldn't understand what could have happened to her.

Yesterday, my father called to see if Steven would come help him build a corral. Steven said he couldn't because I had a couple of appointments and he was watching the kids.
 
I left and went to my appointments and got home early in the afternoon. Once home, Steven contemplated going and helping my dad but decided against it since there were some things he needed to do around the house.


He came in the house a short while later and asked if the kids and I wanted to join him and go check the cows. We loaded up and started towards the location he had been feeding hay. Once there, we surveyed the cows and realized that we were three short.

We went hunting for them.
 

We found the cows on the back side of the place, contentedly eating grass that was poking up through the snow. Since we had traveled so far back, we decided to circle back to the house a different way.


As we headed down the old road towards the house, Steven spotted a tree that had fallen over the fence separating our land from the neighbors, blocking the road. Stating that he needed to mend some fence, he headed to the house to drop the kids and I off.


Steven backed up and we retreated back the way we came. Once home, I took the kids in the house and began thinking about supper. Approximately 30 minutes later Steven yelled through the front door...."Grab the kids, grab a camera.....Hurry! I found Daisy!"

What? Daisy? Is she dead? This couldn't be.  Where is she at? What is going on? It has been 7 days! Is she alive?
 
Questions came to mind quicker than they could come out my mouth.  With my adrenaline pumping I grabbed everything and we jumped in the ranger and headed off.
 
 
"What is going on? Where did you find her? Is she OK?"

 
Apparently while Steven was cutting up the fallen tree and repairing the fence, he heard something that made him stop and listen.


Kids? Maybe the neighbors, but they aren't close enough in proximity.


A bird? Maybe.


Still not certain, and for some reason being driven to know it's source, he decided that it definitely sounded like something in distress. He followed the noise and came upon something sticking out of a tree that had fallen and was hollowed out.


He thought it was possible a fox? It had red head. However, upon further inspection, it was obvious what, or rather who, it was.....DAISY!
He tried to get her out and couldn't. Apparently she had chased something into the hollowed out tree.  Apparently whatever she was chasing was smaller than she was and had gotten out of a TINY  hole. Somehow, we do not know how, she got her head through this hole and couldn't get it out.

Even we couldn't get it out!
 
The snow had covered up the entrance to the log proving that she had definitely been there the whole time: seven days of rain, sleet and snow.
 
 
Her body was protected but her head was exposed.
 

Steven cut the log on both sides of her body, allowing enough room for her. I could touch her body but we couldn't get her head out. He then took an axe and split the log. Her body was then exposed, yet her head was still on the other side of the log. Finally, with me holding her up, we turned what remained of the log on its side and he hit it with an axe. As it started to split he took his hands and pried it apart, down to the hole.........freeing my Daisy!

 
Aside from being extremely weak, thin and stinking to high heaven, she appeared to be fine. Still shaking, I took her inside and gave her food and water. She didn't want the food at first but drank the water. I then bathed her twice.....hoping to get rid of the putrid smell.
 

This experience has "awakened" me yet again.


All things are possible.


 A tiny little dog, stuck in a log for seven days, nothing to eat, "drinking" the snow...


If not for my hubby staying home with the kids, he wouldn't have been home until dark.


If not for the cows being separated, or the tree falling on the fence, or the snow falling so that she would have something to drink...


If not for miracles.


Once again, God slowed me down. He slowed me down to help me to realize that I need to not take for granted that which I hold dear.


Miracles come in all shapes and sizes. This one came in the form of a tiny dog stuck in a tree.

Sorry the picture of her in the log is blurry. I was shaking so bad and didn't want to take the time to focus while she was stuck........

Wednesday, December 17, 2014

Law of love

The second night that we were in the hospital, after being admitted for transplant, I was stopped by a lady in the hall.  She was asking if I had children, and if they were here.  I informed her that I did have kids, but, unfortunately, they were three hours away.  She told us that she was with a church that had brought Christmas gifts for children of the patients.  I told her that the kids wouldn't be at the hospital until the following weekend and that I was sure there were other kids that would benefit from the church's generosity.

Then she asked me another question.

"Do you need a miracle?"

I think I laughed a little at the question.  I was, obviously, on the stem cell transplantation floor of the hospital.  Uh. Yeah.  A miracle would come in handy.

I could tell she was serious in her inquisition, so I composed myself, and answered her question as earnestly as I could.  "Yes.  A miracle would be great. I would like nothing more than my husband to be completely cured of his cancer. For good."

Modern medicine.  A miracle.  Whatever method God wanted to use I was game for and I told her so.

She then went on to tell me that she had previously ran a large company and had quit her job.  She began studying the Bible like one would study science and that, in her eyes, essentially, the Bible and it's laws, were science.  She used the illustration of someone jumping off of a building.  She stated that God created the law of gravity that would bring the person crashing to the ground.  It was law.  And God gave that person the gift of free will....a sort of law of it's own.

In studying the Bible she had equated that repentance of sin, along with prayer (specifically the Lord's Prayer) equaled God granting us that for which we pray.  She believed it was law.

In hearing her speak, I have to admit, there was a part of me that started mentally questioning her sanity.  Obviously, if believing in God, and asking for what we wanted, was as easy as repenting and praying, then there would be fewer sick people, less starvation, diminishing poverty, and no war.  Although I was mentally trying to cast off my skepticism and doubt, and physically, remain attentive to her very passionate words, I apparently fell short.

"I can tell you don't believe me."

Her words cut me because I almost felt as if my honest answer would be, to her, an indication of my belief (or lack thereof) in God and His promises. 

I tried to choose my words wisely as I navigated what I felt was a very slippery slope.  "I DO believe that God performs miracles every day.  I DO believe that God wants, and needs, us to repent.  I DO believe that praying and remaining close to Him is essential in our existence.  I DO believe."

She could see that I was avoiding answering if I believed that getting what I want was as simple as solving a math equation.  She continued her efforts in providing me the evidence that she had already solved the problem.

"I quit my job trusting solely on God.  I had no income.  I trust God to provide me a roof over my head and food on my table.  He has.  I repent by specifically listing the sins I have committed, going through each commandment.  I genuinely ask for forgiveness.  Every. Single. Day.  If I ask God for an apple, within three days, I get an apple.  If I ask God for an RV, within three days, I get an RV..."

(Yes.  The RV threw me for a loop too...)

She continued, possibly seeing that the RV comment had set me back. "I don't ask God for more than I need.  But what I need, and ask for, He provides."

I told her that I so appreciated her message, and that I would also appreciate her prayers, and I hugged her and thanked her, and her church, for remembering the kids that would be affected this Christmas by a loved ones illness.

I walked away not really knowing how I felt about what I had just heard and thinking that I would give anything if it really were as easy as that:  A+B=C.

Even with doubts as to the simplicity of the "equation", or law, that she had proposed, the following passage filled my mind, reminding me that God himself had told us that He would provide:

Matthew 6:25-34 (NIV)
 
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?
 
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
 
******
 
A few nights ago, as crazy as it sounds, I found myself in the midst of anxiety, by realizing that I wasn't in the midst of anxiety.  Follow me?  I actually became anxious due to my lack of anxiety.  I found myself mentally reminding myself the dire situation that Steven and I were currently in the midst of-as if I could have possibly forgotten. I had felt nothing but peace about the situation for days, and, instead of accepting the peace as a gift from God, I actually reprimanded myself because I hadn't been worrying enough, and wondered if I had lost sight of what stood to be lost.  My mind revisited the statistics of the transplant success.  It revisited the conversations I had recently had with other patients, and their loved ones, that magnified the fact that this process is anything but guaranteed.  I had seen people who were on the verge of losing their loved ones.  I had seen people who were on their second transplant, praying that this one worked.  I had seen people that had all but given up hope.
 
And here I was, laying in a cot next to Steven's bed, almost completely at peace.
 
How could I?  Why wasn't I sick with worry?  What was wrong with me?
 
And so, the self-imposed worry began.  And with the worry came the rationalization that your mind tries to make of things that can not be rationalized.  Namely faith.  Could the signs I felt I had experienced, and the subsequent peace, truly be meant as signs that God was speaking to me and that He would take care of, and heal, Steven?  Didn't believing that it was as simple as that almost put me in the same ranks as the lady who stopped me in the hall?  Isn't it somewhat conceited to think that God would answer my prayers?  Why would God answer my prayers anyway?  I wasn't good enough.

So, as faith often does, it waivered.  Or maybe that's just my faith.  One moment so strong, and the next moment questioning.  Not my faith in God.  No, that didn't waiver.  Neither did my faith in God's ability... there were no doubts there.  My doubts came in my belief that God desired to answer my prayers.

So in the darkness, wanting to find sleep, I decided to open the Bible app on my phone and read the automated "verse of the day", believing it would direct my mind in the direction God desired it to go.  This is the modern day equivalent to flipping open a Bible and seeing where it lands. 

And so, thanks to the "verse of the day", I fell asleep, with Hebrews 11:6 in my heart and on my mind:

"But without faith it is impossible to please him: for he that cometh to God must believe that he is, and that he is a rewarder of them that diligently seek him."

*****

I wouldn't be honest if I stated that all the signs, and even the unbelievable timing of the Bible verse, had permanently cleared all anxiety from my mind. I know it didn't.  But I do know that I have peace at the moment.  And, I will take it. 

Maybe the lady in the hall has it all figured out.  Maybe, one day, we will all meet in heaven and she will say, "I told you so...".  Who knows?  Maybe it is as simple as ask+believe=receive.  I honestly don't know. 

I do know that during this time I have had periods of unprecedented fear, but I have also had times of unprecedented faith.

*****

After falling asleep that night with the verse from Hebrews in my mind, I woke up, in the wee hours of morning, when nurses came in to check on Steven.  Having felt under the weather the previous two nights, he had taken the only blanket that I had brought from home, and used it in an effort to keep warm when chilling from the fevers.  I had been using that blanket on my cot, but knew he needed it worse, and found that I was now chilling, not due to fever, but because I was lacking covers.  I thought to myself that I should have brought my fleece tie blanket from home, like I had the last time Steven was admitted, because it always kept me warm even in the cool hospital room...and warmth was something I was lacking.  As is usual, with prayers being offered up for Steven and our family, I eventually fell back asleep.

Later on that morning, after Steven had woke, the nurse came in and said that there was a box that had been sent to us that needed picked up at the nurses station.

"Us?  Something for us?"  I looked at Steven questioningly.  He shook his head.  Neither of us were expecting anything, much less a box.  I went to the nurses station and got the box and headed back to the room.  I sat the box on the bed and opened it as Steven looked on.  I read the enclosed note, from someone I have never met, who stated that she, along with her family, had been offering up prayers for Steven, the kids, and I. 

God's message on me was not lost as I pulled from the box a fleece tie blanket that had been made just for us.



 


 
 
 
 









Wednesday, December 10, 2014

Some say love....

Since the beginning of September, and learning the news that Steven had AML Leukemia, Inversion 3, we have been waiting for the day that he would get a bone marrow transplant and a chance at a cure.

Yesterday was that day.

The blessings that we have experienced in between those two times have been life changing.

******

The night of September 5th, minutes after finding out my husband had leukemia, a nurse on the cardiac floor of Mercy stepped into the room finding me sobbing at Steven's side.  She shared with me that she knew the shock I was going through, as her husband also had battled cancer.

She told me I would find strength but that the journey was much like that of a roller coaster ride:  ups and downs, highs and lows.

She was not lying.

There have been times, much like the first few days after Steven's diagnosis, that I didn't feel like I would be able to dig myself out of the hole I was in.  I was low. I was done. I was exhausted, and the fear of the uncertain future left me dreading the dawn of each new day.

During that "low" I remember the encouragement of so many people around us.  The friends and family that supported us was unimaginable.  I think it was those people that carried me from one day to the next and up out of the hole.

*****

One day, in Mercy Hospital, I was visited by a nun.  It had been noted that Steven was Catholic, although he wasn't.  Since I was, I often received the Eucharist during his stay and we also had the clergy visit us.  The particular visit I remember was the day that the nun gave me a pamphlet on St. Therese of the Child Jesus.  She emphasized the fact that I should really read about her and how faithful of a Christian that she was.

I read the pamphlet and I set it aside.

I had never really subscribed to "talking to Saints", and felt that my prayers were better spent going straight to God and speaking directly to Him.

Talking to God was nothing new to me, but honestly, intently listening to Him was. 

After arriving the first time in St. Louis, and being kept unexpectantly, I knew God was definitely speaking to me...and I could see very clearly the direction He was pointing me in.

 Sometimes too clearly. 

Time after time I was made all too aware of many things that I needed to clear up in my life or hurt feelings I needed to let go of, and it became clear that being passive about relationships, or behaviors, was no longer an option for me.  Or Him.

I felt God direct my paths and many times felt called to do things that were out of my comfort zone.  During this time I found that when I was actually listening to God, instead of doing all the talkingnot doing what He asked of me was increasingly difficult.  Like a child who wants to please her parents, I wanted to please Him.

However, there have honestly been times that I felt God pushing me to do something that seemed too bold, or too forward, for my nature and I shied away from it.  The disappointment that I felt in myself afterwards stung more than any reprimand that God would have given me.  It is that disappointment that has had me walking out of that comfort zone lately.  Desperately wanting God's favor had me casting my insecurities aside in hopes of an answered prayer for Steven.

I truly felt that, without claiming to know God's plan, I could see His hands at work.  I truly felt I was hearing Him....but was He hearing me?  Did He really know, and care about, my desire?  For Steven to be healed?  Many times I would tell God, "I need a sign", and many times, in a clean bone marrow, or blood test, I felt I got it.

But then again, how could I be sure?

Many personal victories have been claimed in the past few months.  More bridges have been built, and more love has been shown, than many people see in a lifetime.  I think all the blessings frightened me and I wondered if God knew that I wasn't interested in happy endings, just happy beginnings.

I need for this to be a beginning.

*****

While in St. Louis a nurse named Megan came in and opened herself up to us more than any other nurse in the previous weeks.  In a time when we felt so alone and far from home, she became a small, welcome light.  In the course of conversation with her, and in sharing that I had spent some time at the Basilica, she shared with me that she, too, was Catholic.  After the conversation went from talking about our "raising", and her going to Catholic school, she asked me if I had ever heard of St. Therese, and if I had ever called on her to take my prayer request to God.

I had...and I really, hadn't.

I had heard of her.  As I had mentioned, the nun in Springfield had told me about her. I read the pamphlet...but, I doubted that anyone in Heaven, aside from God, would care enough about my fears, and the desire of my heart, to listen to my pleas.

But, because of Megan, and her shared story about St. Therese, I remember thinking...."what can it hurt?"  In fact, when she mentioned that after praying a novena on two different occasions, asking for St. Therese's intercession, she had received a rose as a sign that St. Therese would take her request to God, and, in essence, petition Him on her behalf.

So, the more I thought about it, and the more I read about her, the more it made sense.  I have, in fact, plead for everyone who knows us, or our story, to pray for us.  Why wouldn't I ask those in Heaven, and in the presence of God, to do the same?

And so, I prayed.  My conversations with God are continual throughout the day, and ongoing.  But my prayer to St. Therese was very specific.

Although known for giving roses as a sign that your prayer had been heard and that she would take up your cause, I didn't really expect to receive a rose. I think I did this because if I didn't see one, I didn't want to be discouraged.  I did set a time line to be serious in my novena prayer, though. 

A novena is a prayer said for nine days.  Knowing Steven's transplant was on the 9th, I felt that it was obvious that I needed to be certain to say my extra prayers those first nine days of the month. 

Yesterday, while visiting the Basilica once again, it was only after lighting a candle for Steven's benefit, and praying to God that He be merciful and allow Steven a new beginning with the gift of his brother's love, and stem cells, I realized that it was in fact that 9th day of my novena.  As I stared at the mosaic image of the Sacred Heart of Jesus, I wondered if God had heard my prayer, and if St. Therese would join her prayer with mine. 

I had been staring at the image for quite a while before everything came into focus for me.  My attention had been concentrated on Christ's face and my prayers, and I had failed to see what was right in front of me.

A rose.


In all my visits to the Basilica, I never remembered seeing a rose.  I had seen a dried up miniature rose that someone had placed on the bronze statue of the crucified Jesus held by Mary, but I had never seen a single, live rose, anywhere in the place.

But that day, my ninth day, there was a rose.

With tears streaming down my face, and strengthened faith, I returned to the hospital to share my experience with Steven.

*****

The doctors and nurses had all warned us that the transplant process was very anticlimactic. Essentially a bag full of stem cells, resembling a bag of blood, would be gravity fed into Steven.  No pumps were used as the cells would just free flow into Steven's vein. 

I had went with Jane to visit Jammie that morning as he completed his portion of the process.  Steven wanted to go as well, and support Jammie, as he was supporting him, but the nausea he was experiencing kept him grounded. 

I was emotional just seeing the blood leave Jammie's body, knowing that it would be filtered and could potentially save my husband's life.  The gratitude and thanks that my heart was trying to contain burst forth and I told Jammie that I just had to give him a kiss.

Earlier that morning, a friend of ours had sent a verse to Steven that he felt was appropriate.  Steven read it and couldn't speak afterwards because of the emotion that was filling his throat.  It couldn't have been more perfect...and then we all cried.  After a period of extended estrangement from each other, and for reasons that now seem insignificant, or can't even be remembered, a more poignant statement couldn't be found to reflect the situation between Jammie and Steven.
 

Proverbs 17:17  "A friend loves at all times, and a brother is born for a time of adversity."


 When the transplant took place I am sure that any common bystander might think it looked anticlimactic.  Two nurses and one doctor joined Steven, myself, Jammie and Jane as the stem cells started entering Steven's body.  The emotion was so thick in the room that I think we were all afraid to breathe.  The entire process took less than ten minutes, but the effects of it will last all our lifetimes.

*****

The rose was a sign that I felt I needed to know that St. Therese was hearing my prayers and taking them to God...and I got it.  However, hours later, I only need to think about the man sitting next to my husband in the picture below to know that God himself has been hearing them all along.






Tuesday, December 02, 2014

Mind over matter

Yesterday morning we left our house at 7:20 a.m., after putting the kids on the bus, and pulled out of our driveway, knowing that we would not return home together until, as late as, March 19.

The drive to the hospital was pretty quiet, made even more so by the fact that the ice on the roads had me holding my breath most of the way.

As we pulled up along the hospital Steven commented that he felt like a criminal that was turning himself in, knowing full well that he would be locked up.  He stated that he was more of a "runner", and those who know him well know the humor in this statement.  I reminded him that, in this case, "the criminal" had a chance of parole, and running could quite possibly end badly.

*****

While at home Steven savored his time and I tried to.  Really, I did.  However, the very deeply embedded part of me that can't just "be", had me trying to accomplish the million things that I felt needed to be done before we left again:  clearing the mountains of leaves from the yard, cleaning the house, buying and wrapping Christmas gifts, planning everything,  packing everyone,  cleaning gutters....  You name it.  Although I look back now and wish I would have just stayed still and soaked it all up, I know that doing all the "normal things" that needed to be done gave me a small sense of peace.  I think seeing me be "normal"  gave my kids a sense of peace too.

Of course, like normal, Steven and I enjoyed every minute snuggled up with our kids.

*****

During our time home Steven was able to go to a basketball game of Lakyn's.  Her team had decided to surprise Steven by wearing their "mustache shirts" to show their support.  As he noticed them out on the court he became emotional, and filled with love.



There were many nights at home spent playing board games, Battleship, and Pictionary, not to mention a never ending game of Monopoly.  Steven also refereed the kid's "time trials" of  toy tractor and bicycle races, watched pogo stick competitions, and took the kids to school with me each day.  He took in every minute as if trying to commit the each scene to memory.  I heard his enthusiastic laugh on many occasions and despite the laundry list of tasks ahead of me, I always stopped and smiled at the sound.

*****

On Thanksgiving we planned on going to mom's house as was our tradition.  Our tradition also included the "Tour de Turkey", a bike ride from our house to mom's, that was started by Steven seven years ago, because, as he jokingly stated, "he wanted to reduce his carbon footprint".  Of course, I explained that didn't work because I was still driving, but he hopped on his bike and rode anyway, by himself, 11 miles, the first part uphill AND gravel.  The next year he rode again, alone.  However, by the third year, he was joined by my uncle and some cousins, and the ride has since became a Thanksgiving tradition. 

Although a tradition, it's a tradition that the participants, (except for Steven), grumble and moan about doing, year after year, but out of pride sign up for, year after year.  It's one of those "love/hate" things.

This year, without Steven, there was no mention of anyone riding.  We all assumed they were glad to have an excuse NOT to do it.  However, the night before, sworn to secrecy by my mom, I found out that they were going to ride anyway...in honor of Steven.  That morning, before anyone showed up, I told the kids and swore THEM to secrecy.  They immediately jumped on board stating that they were doing it again "for daddy".

When everyone showed up at our house Steven couldn't believe it, but he also couldn't stop smiling.  He bundled up and rode his own bike to the end of the driveway, the "official" starting line. 


 
Blake only made it a mile or so before he gave in.  He rode the entire 11 miles the prior two years but this year he stated that "without daddy beside me as my inspiration, what's the point?"
 
Lakyn, however, found her inspiration in the fact that her daddy wasn't there beside her and she wanted to do it for him. 
 
Both outlooks are completely indicative of our kids character and personalities.
 
We loaded Blake up with us and drove on, telling him we understood the challenge.  Steven told him that next year they would ride the "Tour de Turkey" together again.
 
Lakyn forged ahead, encouraged by the rest of the group.  As she stayed in front, climbing the very last hill, you could see the determination and struggle on her face.  As she neared mom's driveway Steven went out and met her in the road, pushing her up the final hump into the drive.
 
 
 
The sight made my eyes sting with unshed tears. 
 
Lakyn was worn completely out, but, with pride bursting, she told her daddy that she did not push her bike.  Not. One. Single. Time. on all the hills she climbed.  She continued forward knowing that she could do it, "for daddy", no matter how hard it was.
 
He shares the same sentiment.  He will push on, no matter how hard, for his family.

Consequently, this Thanksgiving we were especially mindful of our blessings, large and small.  We were humbled by Jammie's selfless gift of his stem cells and time, strengthened by everyone's love and prayers, and delighted at the support shown through something as "simple" as a bike ride.

*****

The last weekend home we all went to an auction of a late neighbor and friend.  Seeing all our neighbors and seeing Steven out and in "his element" was good for all of us.



When we got home we drove through the fields and checked the cows.  Again, I think he was mentally memorizing the scene, storing it all up for the months to come...



*****

As we pulled in the parking garage at the hospital yesterday, before being admitted, we prayed together once again.  Although it has become much more comfortable and much more common than it had once been, Steven still likes for me to be the one to do all the "talking".

For those that know me well, they probably know why. 

In the parking garage we prayed that God would continue to give us both strength and courage.  We prayed that the kids would be ever mindful of His love and the love of those surrounding them.  We prayed that God would keep safe those coming to and from St. Louis to see us.  We prayed for a successful transplant.  And we gave thanks for all that God has already given us....and at the top of that list was all the love and support that we have received from all of you.


Yesterday Steven started the round of chemo that prepares his bone marrow for transplant.  We made the room as "homey" as we could, and have since settled in.  Please continue to pray for our family.  We want nothing more this Christmas (or the next, and the next, and the next, and the...) than for Steven to have complete success with the transplant.

Please pray that too.