A Post We Never Thought We Would Write

It has been a week since Patrick's second transplant call and we are slowly getting back into the New Normal groove of life. It's different this time around, because whereas December 22nd felt like a fluke - (what are the chances he would get a call after just two and a half weeks of being on the list??) - January 13th felt like divine intervention.

The universe wants Patrick to have a heart, and in a big way.

So while we know another call might not come in for a month, two months, or more, we are attempting to live for all eventualities including receiving another call this very minute.

We have thus far declined most offers of help. A couple friends have given us funds that we set aside for emergencies. We are eternally grateful for the individuals in Seattle who have given Patrick a home away from home, family away from family, and who have added to their own financial burdens in the spirit of kindness and generosity towards someone they know nothing about.

Alaska Airlines has become an extension of our family. Their unfailing support since that first transplant call has been constant and invaluable. The travel difficulties they have mitigated by stepping in when we needed them are too numerous to count. Our appreciation of our hometown airline knows no bounds.

And a certain nephew has arranged a Go Fund Me without our knowledge, and graciously offered to use it to pay for our shop rent for the next few months. Not having that bill on our plate has taken a burden off our minds, and has highlighted the areas of our life where we are now feeling the pinch of Patrick's absence.

With that in mind, for the foreseeable future we have chosen not to turn down offers of aid. We are breaking a family rule and are not taking this decision lightly. (And it goes without saying that we will find opportunities, as we like to do anyway, to pay these kindnesses forward in our near, more stable future).

Patrick is maintaining his diet of mostly vegetables while in Seattle and has found a Safeway several blocks away, within walking distance. He still likes shopping at Fred Meyer and has his prescriptions filled in Seattle at Costco. Gift cards for these three stores, as well as cards and care packages, can be sent to Patrick's post office box at this address:

Patrick Holland

PO box 12052

Seattle, WA 98102

Locally, if anyone would like to gift the kids and I with cards to Fred Meyer and Costco, where we purchase 99% of our groceries and 100% of our gas, we can meet or they can be mailed to our shop address:

Haley Holland

535 2nd Avenue Suite #103

Fairbanks, AK 99701

To those of you who have already donated to the Go Fund Me, and to the Cyberlynx fundraiser arranged by Jami Martinson (I saw that, Jami!!), thank you. I can't say it enough - that the generosity and care displayed by our families, friends, and those of you who caught wind of our story by some other means, has blown us away.

The end goal of course is a new heart for Patrick, and a new lease on life so he can go on spreading his infectious good humor and positivity for decades to come. To those of you physically, verbally, financially, emotionally, and spiritually holding our hands, thank you. Thank you from our entire family.

Finally Home

*** I am posting this to the blog on Friday, January 20th, because the blog apps on my devices have refused to work and I have been tapped out with technology this week. I apologize for the delay. It has been live on Facebook since Tuesday, the 17th. ***

I'm on the plane with the opportunity to think about the events of the last couple of days. They certainly were a whirlwind of excitement and disappointment. Not all of this is about Patrick so please bear with me. I'm in a mood to "get it out."

As most of you probably know, Patrick is in Seattle. He flew down on Thursday, January 12th, and arrived at 9pm Seattle time. He settled in with his wonderful hosts, and I spent the next day zig-zagging between North Pole and Fairbanks, going to the shop and schools and Safeway, and then the schools, and home, the schools, and back to shop.

They were our first practice days for so many things - not just living life apart, but for me running the shop by myself with kids; handling school and extracurricular schedules; and Patrick settling into the routines he planned on creating in Seattle.

After the turmoil we went through on December 22nd and 23rd we decided it was best if Patrick move to Seattle, and we had agreed on the second week of January. When arranging his ticket I said, "Name a day - Monday, Tuesday, Wednesday, Thursday, or Friday." He said, "Thursday." Completely random. It would be the 12th of January.

We figured out a few days after we chose the date that we would miss our anniversary - today, the 15th - and our youngest child's birthday at the end of this month. Necessary evils, we agreed.

The kids and I didn't have to wake up early on Saturday so everyone stayed up late. Just after 10pm, after I had put the older three kids to bed and was getting ready for bed with Samuel, he and I called Patrick to say our nighttime prayers. We prayed for a quick and successful transplant, as usual.

At 10:13pm I received a call while still on the line with Patrick. The number said Hawaii and I don't know anyone with a Hawaii number. But Patrick does. He told me to answer it so I put him on hold. He later told me he had a feeling he knew who it was.

As it turns out, my phone number is in Patrick's records as our Home Phone, so when a heart came available the transplant coordinator called me instead of Patrick. It had been three weeks and one day since the previous call about Steve; five weeks and four days since Patrick was officially put on the transplant list.

The gentleman told me a heart was available and I told him Patrick was already in Seattle, which he hadn't known. Then he told me a family had seen Patrick's story on the news and had called the hospital, offering their relative's heart if it was a match.

I was floored, of course. There aren't enough words to describe how the depth of love in that family's sacrifice affected me.

He quickly went on to say that particular donor wasn't a blood match for Patrick so the heart that was available did not belong to that patient. That disappointed me for about half a second before common sense hit me in the chest and I put him on speakerphone so I could text Patrick to hang up on his end. My text read, "It's UW. They have a heart for you. He's going to call you. Hang up."

It was 10:15pm. Twenty-six hours after he landed at the Seattle airport. And on top of that, it was only mere moments after we had prayed with Samuel about a swift and successful transplant.

Things had lined up with alarming ease and speed. This felt like it was it. The one.

My ticket was arranged quickly. I packed, called and texted the necessary people, and showered. A few minutes after midnight Patrick texted asking for my flight number and arrival time, and then I went to bed.

At 4am, after hardly any sleep, my alarm went off. I spent a half hour preparing what I could, and then I woke the kids. It was time to go to our friend's house so I could take a cab to the airport. I put Samuel's pants on him while he was still half asleep. He was refusing to wake up, but we managed. I forgot so many things when I supervised the packing of their suitcases. After I got to the airport and boarded the plane the real fun began (complete sarcasm).

I developed a massive headache and was exhausted. When I landed in Seattle I could barely walk. I made it up the tunnel leading from the plane and had to sit down, in tears because my head was pounding and the Tylenol wasn't kicking in. I had to ask Patrick to meet me just past security and broke down when I saw him.

So much stress and so little sleep. I thought I was going to have to go to the hospital, and HE was the one getting the heart transplant the next day.

I made it to the car, met the host, and ended up laying down for some much needed rest that afternoon at the house.

We spent the rest of Friday talking, laughing, enjoying each other's company, and getting to know our delightful host family.

At 7pm yesterday we were sitting at the dining table, less than an hour before we were due to leave for the hospital. Patrick had just called another transplant coordinator to ask about what time surgery would start so I would know what time to go to the hospital.

This time it was the coordinator calling back to tell him there was something wrong with the heart and that the transplant was canceled. Everyone in the room stared at him in shock as he turned to me with tears in his eyes. I could feel his devastation as he hugged me, his body shaking with silent sobs. We had joked all day about how quickly the call had come. Now it seemed that our hopes could yet again be dashed just as fast.

Not long after that we changed my ticket to leave today. We were so demoralized. The previous twenty-four hours hadn't been easy on our entire family.

Today a new plan emerged. Or rather, it crawled its way out of the murky caverns of disappointment, slithering and clawing upwards until we once again felt as though we had a measure of control over our life.

We cooked breakfast and went to church at St. Joseph's. It's Catholic, which we are not, but it was within walking distance and was an absolute joy of a service. There we relied on a kind woman who sat behind us to help us through the service, not knowing what to do and when. It was an enlightening experience.

Her maiden name was Holland, and we laughed at the connections between our names and supposed shared lineage. We told her we were from Alaska and from there it was natural to tell her why we were in Seattle. She admitted to not completely believing it until I showed her a screenshot I had taken of a Fox News interview Patrick had given (and probably because he tends to tell people we are from "the" North Pole, instead of making it sound like an actual town).

It was interesting to hear her perspective on hearing for the first time and firsthand from Patrick, the ordeal we have been through. She said something to the tune of, "There you were, sitting in the front row of church, and no one knows any of this!"

I told her as the wife of someone famous *cough cough* sometimes it's nice to just be a normal family.

We spoke with her for probably thirty minutes and exchanged contact info after she offered to help if we ever needed anything in Seattle. After the evening we had the night before, speaking with her was a balm to my soul. Her kindness and gentleness was deeply needed (and I don't mind if she reads this and sees that I said that!)

After church we had lunch at I-Hop. We walked the Pike's Place Market, watched the fishmongers "throw the fish," and visited the quite disgusting Gum Wall (seriously, why?!?!)... I took photos of the Space Needle and buildings taller than any I have seen since our 2007 trip to Arizona, as well as gorgeous architecture, original brick construction, and old cobblestones peeking out from beneath potholes in the asphault roads. Our hosts managed to pack a day of sightseeing into just a few short hours and I couldn't be more grateful for the distraction.

So, it truly is back to the drawing board. The kids and I will resume our schedules in North Pole and Fairbanks, and Patrick will go back to his plans of getting his bearings in Seattle and pursuing opportunities to help the elderly and disabled of the city. He won't let something like a canceled heart transplant get in his way of being a light in this oftentimes dark, dark world.

And we have been assured by Alaska Airlines that when I need a ticket to fly down, no matter how many times these "false alarms" happen, one will be made available to me. We can't say enough about the generosity and compassion of the staff at all levels of Alaska Air. It's almost embarassing how many times we have been brought to tears over the last month because of their kindness.

So, five weeks and four days. To be called twice in that amount of time for a heart is unheard of. To be considered for a transplant no less than 6 times (and quite possibly more than that) is un-explainable. The staff and doctors at UW Heart Medicine want Patrick to get a transplant.

And this second donor? I'm going to call him Alex. Alex, we love you and your family. If we could wrap you and them in hugs, we would hug you for days. This is by far the worst part of the heart transplant process, and even as I type this my eyes are watering. A person has to lose their life for Patrick to enjoy the rest of his.

All our love, Steve and Alex. All our love.

*** It is now Monday and I have gone over this post several times, looking for bits to take out or finding spaces to add things. I know it's rambling and somewhat disjointed. I can't seem to wrap my mind around the events of the last few days, so the best I can do is relay the facts.

The last thing I would like to add is what hangs over my head tonight as I go to bed.

Bags remain packed on the kitchen floor. I can't bring myself to unpack them. The thought of returning to normal life feels paralyzing. Why remedy this situation when we could get another call? I hate to say it but I feel traumatized.

And lastly, today is Martin Luther King Jr day, and a quote I heard on the radio from him spoke to me of Patrick's spirit. I added it to this post. "Life's most persistent and urgent question is: what are you doing for others?"

[I'm publishing this post Tuesday morning because I was exhausted last night and Facebook was giving me trouble.]

TRANSPLANT CANCELED

The heart was found to be defective or inadequate in some way. They don't always give us details.

Back to the drawing board. I'm coming home and Patrick gets to enjoy more time with our new friends in Seattle.