Closing Down the Campsite

As I am settled into my very own comfy chair at home, watching the year-end highlights on TV, I felt compelled to have some closure on 2014-- specifically on my home away from home for several weeks of my life this year--the Campsite.

I lived the most heart-wrenching, prayerful, life-altering days of my 54 years at that campsite. As  a result, I learned, all over again, how to truly rest and thrive in God's love. And for that I am grateful.

We came breathlessly close to losing one of our most precious gifts during that time at the campsite. In God's graciousness, we witnessed a miracle. It made the campsite one of the happiest places on the sixth floor. It gave many renewed hope--something desperately needed on that floor.

The campsite re-emerged once we received that beautiful call that gave Kurt a second chance. Different floor, different surroundings, different situation...yet another miracle of God.

So, fast-forward to December 31, 2014. We're all sitting here, each in our own spot, warm and comfy and back to a blessed normal.

I'll never forget that campsite; it's etched into my memory forever. Nevertheless, I happily close it down with the prayer that 2015 will require no campsites for any of us.

Blessings to you all.

Campsite Meanderings on the Road--When God Smiles, Good Things Happen

God has been smiling  on us a lot lately. And we all know that when God smiles, good things happen.

Making this long road trip to Texas gave Kurt and me time to have that delicate, yet all-important talk about what will go into the letter he'll be sending to the donor family. When we spoke in days past, he said he felt kind of "stuck" on what to say. Kurt is one of those men of few words; he measures what he says in those few words. The words that will go into this letter contain tremendous weight--it has been difficult. I've not been able to help him this time--this initial contact is between him and the donor family.

There are, of course, basic guidelines that the good people of the procurement group have given him and all recipients; nevertheless, it is such an emotional and personal issue, those guidelines can only help so much.

So, while on our way to Hurst, we had a little chat. I asked him how the letter was coming along. He said he was still struggling with just what to say to strangers who  truly had done something overwhelming that, in turn, kept him alive.

My heart goes out to him on this task.

I should have known, however, that God would be smiling...and that good things would happen.

Before this trip, I was determined that I was going to spend some time doing very little other than reading some magazines. I know this sounds ridiculous, but I'm really bad at sitting while at home, so a part of any vacation I take involves taking a new magazine that will make me sit, relax, and read.

I shopped in earnest for the right magazines to take. After some deliberation, I picked up one particular magazine that I surprised myself in choosing. I read this magazine from time to time over the past several years, but always felt that there just wasn't that much to it. Nevertheless, this magazine traveled along with me and was, in fact, the first one I chose to look at on the first evening of our trip…

And God smiled.

As I settled into bed that first night and opened the pages of this fresh magazine, something caught my eye that I hadn't noticed until that very second. There was an article entitled, "Dear Donor Family".

Yes indeed, God smiled and good things happened. I read the article and was amazed at how detailed  and helpful it was. It filled in answers to many of the questions we had. I happily shared the article with Kurt the next evening once we had settled in. He read it; a bit later I saw at the top of the screen where he was working on his computer the words "Dear Donor Family".

Don't you just love it when God smiles?

Feeling My Age

The past 36 or so hours have been a bit grueling around here. Kurt is having a side-effect issue with the immunosuppresent he's taking; as a result, he's been struggling with massive joint pain and muscle weakness. At times, he's been virtually helpless. Late last night we were trying to figure out the best way to move him just a couple of feet from a sitting to reclining position; his achy joints wouldn't allow him to just pop up and flop over. So, Mom became the leverage. At that moment, the 7 inch height, 50 pound weight, and 28 year age difference were all too apparent. I was limited in what I could do; we were pretty well stuck. 

I turned 54 last Sunday--never before have I felt my age more. I don't like to feel my limits. I found out quickly that my limits exist. I found myself trying to make a mental plan of how to get him up tomorrow morning, dress him, groom him, get him down a flight of stairs, and into the car to take him to clinic. 

It's truly humbling and my heart has never felt so much sympathy for caregivers who do this every day of their lives. It truly ages a person.

Long gone are the days when I might have looked a bit younger than my chronological age. Two months and counting of the stressor of the day can carve some pretty interesting wrinkles; any hair that was undecided about becoming a various shade of salt or pepper has now confirmed itself. I am officially my age. 

But that's not all bad, I'm finding. With this time of stress, comes a time of developing more of a matter-of-fact attitude. Making a decision is easier--, not much mincing around these days. After watching a child so near death, I have a whole new respect for truly living. Petty every-day items mean little to me--if we're going to get intense about something, let's make sure it's actually worth getting intense. Otherwise, count me out. I've also witnessed this kiddo of mine literally being given a second chance at life--that's some pretty impressive stuff. I don't intend to waste much time grousing about things that honestly don't matter. Life is, indeed, too precious. 

A greater depth of understanding has carved itself into my soul just as those new wrinkles have carved themselves into my face. So, yes, I feel my age these days--it's been earned and I'm claiming it.

And...I like it.

Behind Every Storm is Calm

Last night we had quite an impressive storm. While we were at Tom's Aunt Mary's, lightning struck a home on the end of her block severely enough that it brought out a myriad of fire trucks and emergency vehicles. When we returned to Ann's there was no power anywhere--the entire neighborhood was dark and silent. After Kurt took his meds and we chatted a bit in the dark, it seemed the appropriate thing to do to just call it a night and feel my way upstairs to bed. I opened the blind to the window and watched the lightning for awhile. It was interesting--almost a strobe-like effect, seemingly never-ending.

But it did, and this morning is calm and sunny. As I look out the window, I see no damage to anything. The power is back on and peace is restored.

Behind every storm is that reassuring calm.

A metaphor for me to remember on this journey. We've weather some storms with Kurt's health since that early morning June 30 when we brought him here; some miracles that rival that magnificent light show in the sky last night have been provided by the same loving God. 

A reminder.

For every bump in the road on his journey to recovery, there will follow a period of reassuring calm. Peace will be restored once again.

Top 10 (+ 1) of the Hospital Experience

I do believe we're nearing the end of our stay here with Kurt at the hospital. If all things work out, we'll be packing up and he'll be getting discharged tomorrow. In retrospect, here are 10 things (plus 1) that I'll remember forever from this experience:

10--Wearing a long-sleeved shirt and two layers of jackets (in July and August) in the hospital is pretty much the norm;

9--Hearing and being able to identify the "infusion complete" alarm from 50 yards in any direction;

8--Loving the smell of fresh Purell in the morning--and every other hour of the day;

7--Not loving powdered scrambled eggs in the cafeteria--I'm never eating them again--ever.

6--Learning the names of and befriending several staff members--some of the finest professionals I've ever met;

5--Learning to sleep in a well-lit waiting area with noise all around and not hearing or seeing a thing;

4--Knowing that Kurt leaves this building known as being a receiver of multiple miracles;

3--Praying that everyone becomes an organ donor;

2--Praying that no one needs an organ donor;

1--Learning that everyday, no matter what the consequence, God truly has it under control--we just need to let go and acknowledge it.

Plus 1: Live Life Like We Mean It--Every Minute, Every Day

The Letter

It's been an incredible week back here at the "campsite", aka University Hospital. It is a sliver of time that has changed the lives of Kurt, Tom, and me forever. Kurt was given life; he's handled it with quiet dignity and grace. It has and will continue to, on many levels, change his life forever.

Earlier this week the team social worker came to visit. She brought us information on the proper protocol between donor and recipient families. When I was handed the information on composing a letter, a large sense of responsibility washed over me. 

Literally, where do we start? 

Saying "thank you" is not enough; it seems appropriate, but certainly not enough. 

Telling how exciting it is to see his cheeks become rosy again, to see him see him return to an everyday life, or to see him get to eat his beloved curry again with a little salt in it seems to be almost cruel in a way. The donor's family will no longer see a future of their loved one.

Saying that it's a bittersweet time is such an understatement. It's an incredibly rough time when a loved one dies--especially a child. We don't know how old the donor was, but we do know that he or she more than likely has a parent or parents that misses this child every day. And yes, there is an unfathomable amount of tribute and love in sharing such a miraculous gift; to say too little about it would seem ungrateful on my part.   

So, I continue to think about what will be said in the letter. I want them to truly know that we know how precious this gift is. We want them to know that Kurt will treasure their treasure. We want them to know that they are to be admired and blessed for making one of the hardest decisions in their lives at one of the worst times in their lives. We want them to know that this precious gift will never be seen as anything less than a blessed miracle.

I'm still not sure it will be enough.

I will pray that God will give us the right words when the time comes--and I know He will.

What Can I Do?

As I sat on my little make-shift bed between visits to Kurt while in the ICU and PCU, I found myself wondering what on earth I could do to help. I had reached the point to where I just randomly walked up and "welcomed" a new person or group of people who arrived. I always told them it wasn't a club any of us necessarily wanted to be a part of, but welcome to the neighborhood and I would help if I could. 

The longer I sat, the more I thought that I could just start pitching in to help--a little dusting here, a little sweeping there. Of course, it doesn't work that way. This isn't a neighborhood; it is a facility where very, very ill people come and go and their families and friends gather for support. People are paid to do the dusting here and the sweeping there.

And then I felt a little more helpless.

I know, from past experience, that some of you feel this way while we're away from home. You're so kind with your calls, your messages, and your cards asking if there's anything that can be done. Frankly, I've been away long enough now, I'm not really sure. But, if I think of something, I'll be sure to let you kind people know. You're a blessing to me every day.

In the meantime, Ann has a good suggestion--if at all possible, donate blood. It seems that the bloodbanks all over the state are in dire need of blood. And that individual need can come suddenly. Kurt needed some transfusions while in ICU; he needed frozen plasma as well as blood before his colonoscopy back in May. I know there will need to be some on stand-by when the liver does arrive and surgery begins. 

Even if it never finds Kurt, it is a remarkable gift you're giving--life.

Thanks and blessings for a great day.