Monday, April 27, 2015

We Are Only Dust

This post will probably be a collection of random thoughts. I'm at the hospital this week so I'm using my son's laptop and I stink at typing on it so I will probably tire of it pretty quickly.

We had a good weekend.  Zach came down for the whole weekend and that made it so great for Adam who loves having his brothers here.  He loves having pretty much anyone here but he especially loves having his brothers here.

The other day I posted on social media that I was walking to the bathroom and encountered a woman walking toward me who was sobbing.  She had just walked away from a doctor and they were in the very same ICU waiting area that we were in 10 weeks ago.  My heart immediately went back to that moment in time.  I knew whatever she was crying about was breaking her to the core. I wanted to reach out to her and hug her but she seemed blinded by her grief.  If I had been in our hometown hospital it wouldn't have seemed so intrusive to reach out to her.  But people in the city seem more guarded and I didn't want to offend or frighten her. I let her pass by me.  I've regretted it ever since.

Last night I opened my Bible and I felt dry and burned out in my soul.  You would think that I would be driven to the Word for sustenance.  That has been true in the past when it was ME that was needing God's merciful miracles in my life.  But somehow this 10 and a half week odyssey has pulled the life out of me at times.  Go figure.  So I just opened my Bible and played the roulette of reading whatever page it opened to and I got this:

"The LORD is like a father to his children, tender and compassionate to those who fear him.  For 

he knows we are only dust"

Psalm 103:13,14

God is so good.  He knows that I am only dust.  He knows that sometimes I make mistakes and don't reach out when it seems later that I should have done.  He knows that as much as I NEED Him sometimes I don't have the strength to pick up my Bible and study it but just let the TV play some random show that I'm not even watching.  

He is tender and compassionate like my earthly daddy was and then some.  He knows that I fail and He knows that some days I am so spent emotionally that I just need Him to reach out to me from the page that I "happen" to open. 

I am so thankful for such a loving Savior, Father, Redeemer, God.

Adam is going back to IR today to have a drain repositioned yet again.  He worries about all the radiation he's gotten and is still getting.  I know he wonders when he will get out of here and what his life will be like until he has completely healed.  I don't even know how he has endured what he has over these many weeks except by the grace of a loving God.  Please continue to pray for his complete healing and for all of this to be a blip on the radar of his life one day.

Thank you, Warriors!

Tuesday, April 21, 2015

Trying to Live in Romans 8

I do NOT want to write another blog post about what we're going through in our lives right now.  But we're still here.

Our day to switch places is coming tomorrow.  My husband has reached his breaking point in being in the fight which happens when you've been there a week.  My son is letting me know that he needs me to be there with him.  My daughter is begging me not to go back.  I am wanting to be with my son but dreading the return to the city, the hospital, the hotel and the "routine".  

But the fight goes on.  It feels like we are perched on a ledge and each day the news from the doctors can push us either over the edge or back into the building but no matter what happens we find ourselves still on the ledge.

It is a battle.  

This morning I was led to read Romans 8.  It talks about the battle for our minds and our sinful natures.  

"If your sinful nature controls your mind, there is death. But if the Holy Spirit controls your mind, there is life and peace." Romans 8:6

When I let my sinful nature control my mind fear, worry, anger and bitterness want to control my mind and that is death.  I WANT life and peace.

It is a battle.

I'm trying to stay in it by going to the Word and finding hope.  But on many days I really feel like I don't know what else to say to God.  I'm sure many of you feel the same way in your own lives or in praying for us as so many of you are doing so graciously.

"And the Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray.  But the Holy Spirit prays for us with groanings that cannot be expressed in words."  Romans 8:26

So many times I have cried out to God and said "I don't even know how to pray anymore because I just keep saying the same thing--Please Jesus, just heal my boy."  

The medical world is a complex web and in particular when you are in a teaching hospital there are levels upon levels of doctors, residents, attendings, etc that come to you each day with their thoughts and opinions of your condition.  Some days it seems like all they can tell you is seemingly really bad news.  You wonder if you will ever hear a good word or if anyone really knows what they are doing.

"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." Romans 8:28

To be honest, I most truly understand that after 9 weeks of our predicament most people's lives have gone on and we are merely on the radar of your daily prayers.  I get it.  I have lived it when other people's lives were struggling.  We also live 30 miles from where we go to church so our dearest friends' daily lives are always far removed logistically from ours.  Truthfully, that has always been really, really hard.  You feel so removed from the support system you so desire with which to connect.  It is lonely and isolating.

"What can we say about such wonderful things as these? [the things working out for the good]  If God is for us, who can ever be against us?  Since God did not spare even his own Son but gave him up for us all, won't God, who gave us Christ, also give us everything else?"  Romans 8:31,32

It is a battle.

Once again, the mind is the battlefield where we must focus on Christ and what He is to us.  But we are mere humans and the battle is tough.  Yes, Christ loves us and is for us.  But sometimes you don't feel it.  I told someone at church on Sunday that I just wanted for one good thing to happen for my family this week.  It felt awful even expressing that but it is how I am feeling.  

I want to focus on what Jesus is to me but, my friends, it is a battle.  

"Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or are hungry or cold or in danger or threatened with death?  No, despite all these things, overwhelming victory is ours through Christ who loved us.

And I am convinced that nothing can ever separate us from his love. Death can't and life can't.  The angels can't, and the demons can't. OUR FEARS FOR TODAY, OUR WORRIES ABOUT TOMORROW, and even the powers of hell can't keep God's love away. 

Whether we are high above the sky or in the deepest ocean, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord."  Romans 8:35, 36a,37-39

Run to the battle, my friends.  We need each other.

Thursday, April 16, 2015

Warning! You Are About to Enter the Feelings Zone

Spring feels a little more powerful to me this year.  We left here in a hurry in mid-February with snow and ice threatening our safety.  Though I have been home a couple times intermittently, it is amazing to leave in February and come home with full blown spring in process.  It is like we've lost those months in a time warp.

 The trees were stark and dead looking when we left and almost every tree in our yard is filled with infant leaves now.  The grass was brown and covered with snow previously and now it is green and needing mowing.  My landscape plants are starting to awaken to the season and the birds' singing is the most amazingly, beautiful sound to my ears.  

To go from the constant noise of a hospital with all the beeping of IV pumps, the announcements on the intercom, and the hustle bustle of the never ending activity whether day or night to the peaceful symphony of birds singing is indescribably wonderful.

But my heart wonders.....

I'm wondering when they will get the feeding tube positioned correctly today?  How will the feedings go when they start them after the 24 hour wait?  Did my son sleep well last night?  Is he still vomiting up everything he drinks? How long will he remain in the hospital?

And those are just the questions for today.  

My mind wanders to the future days when we are finally able to bring him back to our house. because, you see, even when he comes home the gavel will not have hit the desk yet declaring him well and case adjourned. 

Will I be able to effectively care for all of his medical needs? Will they require me to measure what comes out of his drains every couple hours as they are now or will I be able to just empty them every couple hours and flush them every 8 hours? Will I be able to tolerate the smells?  Will we have someone to give him his IV antibiotics or will they train me to hook him up to his picc line? How about that feeding tube? Will I be sterile enough in my work that he doesn't get more infections? Will he be able to shower or will we have to figure out something else? What clothes will he need to fit over his drains and also fit his body which has shrunken several sizes?

When I was sitting in the hospital room the past few days my mind was fixed on these questions. Because it will not end on the day they send him home with us and that picks at my soul.  While other folks are anticipating their kids' weddings, new grandchildren, first jobs or other achievements I am hoping my kid will make it out of the hospital and praying he will one day have a normal life again.  That sounds like I'm feeling sorry for myself or that I'm unable to be happy for you.  Not really.  It is just my reality and I'm telling you how I feel.  

My other children's lives are ongoing and they want to be happy and enjoy the normal fun events of life too.  But in the back of their minds is the fact that their loved and cherished brother is fighting just to be well again. Should they feel guilty for moving forward? Their parents are pretty focused on one kid right now. You can imagine how they might feel.

And lastly, being prayed for, loved, visited, encouraged and helped is a very humbling thing. Each person who has come down to visit Adam has made him shake his head in wonder.  He has felt your love and encouragement by your many acts of kindness toward him.  In your love for him you have loved us and it is overwhelmingly appreciated.

A dear cousin of mine graciously offered to drive here and in her words "come out there and hold your arms up like Aaron did for Moses".  Amazing.

But let me say that we need that in the spiritual sense.  Many days I feel so weary and dried up spiritually that all I can pray is "Jesus, please heal my boy".  The words won't come and the strength is gone in myself.  That is when I depend on Jesus to send me your comforting words and prayers to keep me going when it feels like I cannot any longer in my own strength. 

Thank you, dear friends.  We appreciate you more than I can express.

Sunday, April 5, 2015

Easter Sunday Update on Adam

This morning I got to go to church and be a part of worship and it was so nice.

While I was at church I told everyone who asked about Adam that he is doing better and little by little we are gaining.  Then I got a text from Craig.

Today did not go so well for Adam.  Something is not right with his original drain and I won't go into detail because I want to spare my son from the intimate things of his life being online apart from his own choosing to  put it out there.  But something is not right.  So they will be doing yet another CT scan most likely tomorrow to try to sort it out.

Craig and I will also be switching back this week also at some point.  The truth is none of us want to be in Kansas City.  Not Craig, not me and certainly not Adam.  We are over it.  But we don't get to choose the path we are on right now, least of all Adam who has had to deal with more than either of the two of us.  Honestly, our whole family needs the prayers of anyone who is willing to stand in that gap for us.  This experience is draining and exhausting for all of us.  It has truly given me a new appreciation for people who are also going through a long hospitalization or illness with a family member.

Please pray that the doctors can find the problem with what seems to be some kind of blockage keeping Adam from being able to keep liquids down and which is causing reflux.

Thank you to everyone who is bearing us up and loving us through this.  We appreciate more than you know.

Wednesday, April 1, 2015

Hold Me, Jesus

It happened again last night.  I had to leave my son's hospital room knowing that it would probably be around a week before I return to him.  It was too much to think about and I cried while he comforted me.  "You have other kids to take care of, mom," he said.  Bless his sweet heart.

This morning I debated within my soul whether it was better to just head for home or stop in at the hospital and see him again before leaving.  I decided against seeing him again because I knew it would just make things harder for both of us.  

Last night when I got back to my hotel room alone, with yet another freshly made personal pizza from the restaurant next door to our hotel, the stillness and the quietness, the extreme loneliness of that room with its proximity to, yet distance from my son, broke me.

As I laid in that bed last night before sleep could come, I bawled my eyes out.  The dichotomy of my life spread out before me:  1) my longing to go home and be part of our very boring, usual life  2)the longing to stay by my son's side to comfort him, help him and be near him during this tough time.

And in that moment I. COULD.NOT.WIN.

Anyone reading this is certainly getting tired of my writing about it, but nonetheless our lives have not changed.  We are still in this state of limbo which has us living two separate worlds of existence. 

It was at that moment that I posted the words of Rich Mullins' song Hold Me Jesus onto social media.  It was all that I could cling to at the moment. 

Hold me, Jesus, cause I'm shaking like a leaf

You have been King of my glory

Won't you be my Prince of Peace.

Life feels like there is no glory right now.  Many of you have been there and worse.  So many friends have actually had to bury their children whether newborn, young, or grown and I realize that we are not THERE.  But I think you are the people who get me right now.  No glory and on the surface seemingly no peace.  But that's the thing.  There is peace.  And in this moment I have to, I MUST let Jesus be the Prince of that peace.  The One who will take me through it when it feels like it is never going to end.  The One who knows the beginning from the end.  The only One who can hold me when there seems to be no glory and I'm shaking worse than a leaf. 

A little while ago I walked into my home in the country which I love so much and it felt stale and unfamiliar yet again.  Alternately, good old room XXX at the hotel where we are "living" in the city also has lost its appeal even though it is near to one of our beloved children.  The now and the not yet.  

I'm not writing this down to make you feel sorry for me.  It is just how I get all of my "feels" out. 

 Easter is my favorite day ever.  Not Christmas, Easter.  I haven't been in church for 6 weeks.  I don't miss the building though it is special.  But I miss the Word being preached, the fellowship of other believers and the beauty of worship as a congregation.  Sunday, I will be there with my fellowship singing Christ Is Risen and it will mean so much to me to sing that to my King and Prince of peace.  

Hold me, Jesus.

Tuesday, March 17, 2015

When Worlds Collide

Today the thing that I had been dreading for so many reasons happened.

My dear, treasured, cousin Nancy passed from this world to the next to live with Jesus and wait for us to join her.  It wasn't unexpected.  She has been fighting cancer for a while now.  But the stark reality of hearing that it had actually happened still punched me in the gut and left me bereft in a way I cannot describe.

Nancy and I are 74 days apart in age.  Our moms are sisters that are closer than sisters.  They are more like twins who share that weird twin sense thing you hear about.  We grew up together like siblings doing everything you can imagine together. Our dads were best friends who married sisters who were best friends. Our families were perfectly matched.  All six of us kids are adopted and we each were the same corresponding ages.  When the older boys and we were around ages 4 and 6 we sang together in little quartets at church gatherings and such.  Our families vacationed together. As kids we pretended to be sisters and even twins since we often had matching outfits.  We even had similar hair types--both of us have thick, curly hair.

As we got into junior high and high school Nancy and I sang together just the two of us more and more.  By the time we got into high school we were singing at lots of weddings together with Nancy playing the guitar.  I looked up to her and thought she was the coolest person and she had oodles of friends that I wanted to be my friends.  My school didn't have a drama program so I lived vicariously through her plays and musicals throughout high school.  I once had a nightmare where I dreamed she had died and I vowed never to sing again.  When I woke up it seemed so real but thankfully it wasn't.  But that is how intrinsic she was to my entire being.

Nancy was always cutting and styling our dolls' hair when we were little kids so it was natural for her to move on to cutting my hair as we got into junior high.  I trusted her even though there were times that it wasn't exactly salon worthy. :)  Then as she got near high school graduation she started attending Barber College simultaneously with high school and got her license to cut hair soon after.  I can honestly say that until I found my current hair stylist several years ago she was the only one who really "got" my hair and could make it look the way I wanted it.

We had funny nicknames for each other that we decided on after we had a funny experience at Bible camp as junior highers.  Up through our last conversations this year we used those names with each other as jokes.

She introduced me to people that have changed my life and I introduced her to people who changed her life.  When she turned 50 I made a list of 50 memories of the two of us and gave it to her with a homemade card of the two of us sitting naked as 3 year olds on a family vacation.  The truth is, I could come up with way more than 50 memories of the two of us.  We shared a lifetime together.  I just never thought that our time together would end so much sooner than I wanted.

And now, the thing that I've been fearing the past month has happened.  My dearest cousin has passed on while my precious son is lying in a hospital ICU with no immediate quick recovery in sight.  So the family that I cherish back in Illinois and the funeral of someone that has impacted my life more than almost everyone else might as well be a million miles away because I won't be there.

Today my son said to me "you are going, Mom" even as he had tried to comfort me as I cried at his bedside this morning when I got the news.  "No," I said, "I will be right here with you and I want to be here with you."

This is what happens when worlds collide.

I'm so blessed to have loved her and known her.  I am beyond thankful for the two different weeks that I spent seeing her over the past year.  I will see her on that day when I pass through the veil, along with so many others whom I have loved so dearly here.

And for now, I press on:  Philippians 3:12 Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.

Friday, March 13, 2015

Bumps in the Road

Life is most revealing when you experience bumps in the road.  Character is exposed and relationships show their true colors.

God is also most revealed to us, it seems, when life doesn't go as we have planned.  I don't remember the quote because it has been so long since I even knew where her books were, but I used to love reading the author Ann Kiemel Anderson.  But I do remember she once said something like 'experiential writers are always going to have some hard things in their lives because that is where they get their material'.  Now I don't purport to be a writer like she was, but, I get a good deal of personal creativity expressed by writing my thoughts down here. And boy have we had material.

My heart is overflowing with all of the experiences of our family from the past month that I need to write some things down, but I don't really know where to start.

We brought our dear son home from the hospital last night and I truly expected to tuck him into bed, get a good night's sleep and spend the afternoon today with him outside walking around the yard for exercise.  Instead, when I walked into the house after a morning appointment, my guys were literally walking out the door to head back to KU Med to have another procedure done.  And last night?  Well, by the time I fixed us something to eat and started the laundry and did the dishes it was late and Adam was ready to go to bed.  But first I needed to change the dressing on his drain.  When we looked at it we realized that something was very wrong and ended up calling the "fellow on call" to see if we could fix it or would have to get in the car to head back to Kansas City.  Fortunately it seemed that we fixed it and sometime just before midnight we all got to bed.  Apparently something could be done to further help the drain work better and they have gone to get that done this afternoon.

Over the past four weeks I have watched my son deal with pain, suffering, confusion, distress, disappointment and fear.  He has handled it all with grace and that's a big deal.  Ever since he was a little boy Adam has NOT liked surprises.  It is part of his very intricate and amazing personality and has often caused him much unhappiness.  But over this time of trial he has dealt beautifully with all of the ups and downs (mostly downs)  that have taken all of us by surprise.  He treated each person who came into his room to deal with him in a respectful and decent way.  Even when he was intubated and partially sedated he would reach out to shake the hand of the doctor or nurse and "say" thank you by pressing his hands together and raising them up to the ceiling just as he had verbally said it when he was not incapacitated.

We also saw the grace and love of many of our friends and family over the many weeks in hospital. Adam's three dearest friends all live in the KC area.  When they were all counselors at camp years ago they named themselves The Quad as the four of them lived together all summer in a room.  When Adam was intubated and couldn't talk he "asked" to write things to us in order to communicate once he was a little bit more lucid. One of the first things he wrote was "I want the Quad heeeeeeeeeeeere."  Those three young men answered the call of friendship to him and came to visit him, some more than once over the 4 weeks.  Thanks Mark (and Ashley), Gavin (and Janice!) and Jason (thanks for letting him take off on a Saturday, Miranda).

The folks at Adam's work sent their well wishes countless times via messages, funny videos they made or phone calls to perk up his spirits.  Even when he was under the effects of versed or propofol he would mumble things that made us think he was "working" at his job.  Many days he would say that he just wanted to go back to work because he loves his job.

Caleb and Rebecca Broxterman came by one night and visited as they live in the area as well.  It was fun to watch them listen attentively to Adam as he regaled them with trivia and stories of racing horse legends from the Triple Crown races. When our Zach came with the boys' friends Jordan and Derek it felt like they were back in their college house chatting again.

Our closest friends Scott and Vickie and Charlie and Judi came and sat with us, listened to our fears, or took us down to the cafeteria to eat with them to get out of the room.  Another couple of friends that we go to church with came and visited . He also happens to be the CEO of  the company for which Adam works.  I found out that he had written "thanks Boss" and gave it to Brad while I was out visiting with Pam.  Dear friends from the past and parents/sibling of Adam's dear friend from grade school, Dawn, Clint and Kortney came and took all of us by surprise one Sunday afternoon.  Their son Nate was Adam's best friend in elementary school and was the best medicine at the time of Adam's transplant 16 years ago.  None of us will ever forget Nate and Adam sitting in the hospital bed eating string cheese together in September of 1998.  One of Craig's co-workers came by one day to visit as well as some dear friends from home who now live in KC and pastor a church there.  Thanks so much, Matt and Jill!  Charlie and our discipleship  pastor Chris graciously drove my car down one day so that I could get home and take care of Anna for a few days.  The fact that they took that time and also the prayers they prayed over him meant so much to Adam.

Of course our family has supported us and loved us through all of this in so many ways.  All of our grown kids came down once, twice, or more to sit with us and spend time with their brother. Katrina spent the night with me while Craig had to go home and file some taxes.  Nathan gave up his day off and stayed way too late just to be with all three of us.  Zach came by with friends to cheer up his brother. Craig's sister Susan and her husband Mike live nearby and came by once as well as Susan stopping by a couple more times on her way to or from the airport for work.  Sister Trish and her husband Mike flew down one Sunday afternoon from Minnesota and spent the afternoon.  Then on their wedding anniversary weekend they flew down again and surprised us by stopping by the hospital on Friday night, driving to Wichita the next day to visit Nathan's annual Garden Show, travelling on up to Manhattan  to surprise Zach and Katrina at each of their jobs, and finally, drove on to Sabetha to surprise Anna at her school's basketball game.  Their unselfishness at giving up their special day to make our family feel loved was above and beyond what we could have imagined.  My sister texted and called me more times than I can count and was constantly telling me that it was all she could do to keep from coming and being with us even though she is a teacher and a busy mommy.  I kept up with my mom each night after we got back to our hotel or she would call me during the day to get updates.

Something that means the world to me is that I never once had to worry that Anna was happy, loved, fed and sent to school and all her activities.  Scott and Vickie and Charlie and Judi loved her like one of their own children and allayed her fears that her parents would never return.

And lastly, but most significantly, my husband fought the giants of bureaucracy, made sure that Adam got the care he needed, listened to countless doctors and specialists with me,  stayed by his side all but 2 days of the entire time, cried with me, held hands with our son across the bed with me, took care of all our lodging and meal needs, walked the halls with us, pushed the wheelchair outside with us, went out and got whatever Adam wanted to eat, swabbed his mouth with sponges dipped in water when Adam's lips were parched from no drinking, worked at his job from a hospital room, and prayed for us after I read scripture over Adam each night so he could sleep without fear.   All of that and much more than I could ever recount here.

We give thanks to Jesus Christ Who alone is the great healer and comforter of those who are in need.