One Year

One year ago, I woke up a little early, surprised to find G standing by the bed and a light on. He was restless and told me he'd been awake for a half hour or so, unable to sleep because of the pain and the difficulty breathing. It was the second morning in a row that he woke up early and seemed odd. The last half of the week, he'd gone from sleeping the majority of the time to having such trouble sleeping. I didn't think much of it at the time, other than the added stress it caused me because more waking hours in pain for him meant more of me being torn between entertaining P (an extremely active 6 year old!) and being with G.

We went downstairs together and I made coffee and he poured himself a big jar of orange juice. A lot of times he would mix lemon juice in so that he could taste the "tang" better. I wonder if he did so that morning? I think he didn't because of his stomach trouble.

We sat at the table in our chairs across from each other and chatted. I wish I could remember what we talked about. It wasn't anything big - I think it was just chit chat (which reminds me: G and I used that word a lot. So much so that when P was a little 1 or 2 year old, he looked at me at said, "Mommy where's the chit chat?" in his little babyish voice. G and I cracked up. It was so adorable.). I must've seemed a bit disinterested because he asked after 30-45 minutes if I wanted to do my advent devotional (which I love and he knew that about it) and I said yes - that I'd like to get it in before P woke up. So he went and laid down on the couch and I helped him with blankets and pillows and he took a nap.

That response of mine has plagued me. It's the kind of thing you say on a normal morning when you think you have time left with your loved one. The assumption of time. I assumed we would have more mornings, more casual conversations. Had I known it would be our last time to sit around and chat with each other, I would've not ended it. Had I known it was his last day on earth, I would've sat with him while he napped and cried and prayed and taken pictures and held his rough hands (not from work but from refusal to use lotion!) and stroked his hair and told him I loved him.

But that's not how God saw fit for this to unfold. I didn't know. And maybe it was a mercy because who can handle the weight of knowing it is the last interactions with your spouse of 13.5 years, sweetheart of 16 years. What words could be said that could ever tie a bow on a relationship of that magnitude? What moment at the end could make up for any moment that proceeded it? Like the final exam of a college career - it can only carry so much weight. It is important, but a bad score will not ruin a GPA built over 4 years, and a good score cannot fix one. And so our last morning was an ordinary morning in many ways - I was a mix of selfish and caring. Loving and self-absorbed. G may have been a little hurt but knew I loved him and was probably too tired to care. I showed my love by taking care of him the rest of the morning and day. He showed his love by fighting for life until the end. Two people who really loved each other, through thick and thin, sickness and health, good and bad, but imperfectly for sure.

G napped very restlessly on the couch that morning. I know that at some point P came downstairs for breakfast and watched his favorite YouTube channel "The Izzys". I only know it because that's what we did every day and this was an "ordinary day". But I can't remember it. It would've been normal for him to see his daddy napping. G often did "sleep after sleep" in the mornings that winter and so nothing seemed amiss.

Except that he was very restless, agitated. Nauseous (or as he kept correcting me - it's stomach PAIN not nausea). I had to give him his morning medicine and I remember giving him some saltines with it to help. He had woken up extremely itchy all over his body and we thought he was having an allergic reaction to one of the new medications from the night before so I gave him some Benadryl too.

Throughout the morning I cared for G while cutting out the shapes for our Christmas cookies and cooking them in the oven. P was here with us of course but I can't remember what he was doing! He wasn't very interested in doing the cookies - I do remember that part. The following day, we planned to have a big family cookie decorating party with UT, UN, AA and ME so I was getting everything ready. We knew G might not have the stamina to do that but thought we could play Christmas music and take turns visiting with him while others decorated cookies. Decorating Christmas cookies is a huge tradition for me and G - he always made them hilarious and somehow was able to use his dark sense of humor in Christmas cookie decorating! We even decorated them in the hospital while he was waiting for his heart transplant. Never missed a year.

Around 11am (I think?) UN arrived. I was worn out. I needed some fresh air and a quick break. I'd been running back and forth from the kitchen to the couch all morning caring for G and I never do well without some outdoor time. So when UN came in I asked it I could do a quick walk. G stirred and said hi and maybe got a hug from Nate and then I slipped out. I walked through the condo lot, up the hill, through the woods, past the park and back home - listening to The Office Ladies Podcast I think - just getting a little break. This is another thing I've had trouble forgiving myself for. Had I known it was G's last day, I wouldn't have gone for a walk. But I didn't know. My counselor has reminded me that God didn't see fit to let me know. I was making choices based on what I knew. And I knew that I didn't do well without a break. Perhaps God was protecting me and helping me get energized for the nightmarish day that was unfolding without me realizing it.

G woke up when I got back into the house (I will blame our noisy glass door!). This is where my memory gets more foggy. I think UN has said that he had sat at the table and watched G sleep and worked on his computer - that G had slept the whole time I was gone.

I think he woke up feeling sick. He had all these sores in his mouth and I believe they were cuasing him pain. I think I suggested he rinse his mouth in the kitchen with a special mouthwash that we had. My recollection is that he tried walking to the kitchen and nearly collapsed from dizzyness. Or he made it there and nearly threw up while using the mouthwash and got dizzy on the way back. Either way, it was alarming. We got him back to his "spot" and his "stack" of pillows and tried to get him comfortable. He couldn't get comfortable. I have pictures of UN and P sitting with him, UN at his head talking to him and P near his legs, holding his hand. Was that now or later? I'm not sure.

I do know that I took his vitals. His heart rate was around 50bpm which was very alarming because his baseline for 10 years post transplant had been near 100. Also his bloop pressure was extremely low if I remember correctly. Like in the 80s over 30s. Immediately I knew something was very wrong. He didn't want me to call the on-call transplant coordinator because he didn't want to go to the hospital but I convinced him to let me just call and see what they thought was happening so that we would at least know our options. I think during this time P went upstairs and brought down a stuffed animal for G - was it his beloved bear Winston?

I left a message with the hospital's answering service and the coordinator we'd been working with, A, called me back. She said we needed to go to the ER. She thought maybe G had had too many sedatives (when I listed for her all of the medications that palliative care had him on to relieve his pain and nausea). She didn't say we needed an ambulance. She didn't sound panicked, just concerned.

When I hung up, G was upset because he thought I was trying to make it sound worse than it was to make A tell us to go to the hospital. It was completely unreasonable (UN agreed with me!) but also showed that G had some fight in him and was being very cranky and was oddly comforting. He refused to go to the hospital. Going there would mean being alone (COVID) and he hated to be alone. There was no way he had the strength to walk out of our house and around the building to the car. And he absolutely refused to take an ambulance because he hated doing that any time and also knew that again, he would be alone. It's so weird to me to think I said this, but I told him that staying home might mean that he would die (I don't know if I was being dramatic or if I was thinking it would be considered non-compliance and a strike against him when considering a re-transplant) and he said - was it at this point??- that he'd rather die than live like this. I can't remember exactly when he said that. But he was clear that he wasn't going to the ER no matter what and was getting anxious and agitated. I suggested that maybe he get a nap and we could think about it more later. A hadn't said to take an ambulance so it must not be urgent (because she had told us to do that when his heart rate was in the 180s in Sept).

But G was so uncomfortable. He was in so much pain and he was having such trouble breathing. I grabbed a bunch of blankets to try to make a soft bed on the floor for him but it was too soft so that was a no-go. Finally I suggested that I bring down his breathing machine because at least he could breathe easier with it on. He didn't want it downstairs and said he couldn't get comfortable anyway and wanted to go upstairs to the machine.

I have no idea how he got himself up the stairs. Slowly. Painfully. With UN behind him in case he fell. UT had come in the house at some point during all of this and was now keeping P entertained.

We got him in bed, with his breathing machine, and I pulled the blinds down to make it dark. He asked me to stay with him so I sat in the chair next to the bed. It was lunch time and P brought me food and a drink (which he spilled). All the noise of P going in and out with lunch was agitating G. He was just hurting so much. So we asked P to stop coming in and I tried to sit super quietly and just look at my phone while G slept. But he couldn't sleep and wanted to talk. I honestly didn't want to (just worn out and wanted a break) but I did.

He asked me what was happening and I told him that his body was shutting down. He told me he didn't think that he had it in him to do another heart transplant. I told him that I didn't necessarily think he should and that I didn't think he would survive it. He asked me what kind of husband and father he would be to not try? I reassured him that he could only do what he could do. That we wouldn't be upset with him. That I loved him and was proud of him for all he had done to fight for us. He told me he didn't want a transpalnt. I agreed with his decision and said that we should get hospice in because they could help him not be in so much pain. He said that if they could help him at all, to call them immediately. I texted UN who had everything on standby and he immediately got to action getting hospice set up to come that day.

G asked me to call up his brothers so he could talk to them. I went downstairs and told them to go up to see G. UT, UN and P had been playing the Richard Scarry board game that P loved so I took over the game for a bit. I could hear lots of crying from upstairs (they were always big and loud cryers). Then they came down and told me G was asking for me. When I went upstairs I held G and cried. Then we decided we should call P up. We got G situated in the chair next to the bed and I went down and told P that daddy wanted to talk to him. They had a very sweet but short couple minutes together (it seemed that P didn't understand what G was trying to tell him) and P wanted to get back to his game. It was so quick that I suggested that G record a video for P of the things he wanted to say to him and he did. I am so thankful for that precious video that shows G's deep, deep love for P and his final words to his boy. G got back in bed with his breathing machine back on for a bit and I'm not sure when P came back up or how all this unfolded but we took a couple selfies together as a family. One with me holding the camera and one with G. I had laid in bed with G and held him and cried. I told him I didn't want to lose him. He told me not to cry (in a sweet tender way). He told me to "do what you need to do". I wish I could remember more of our conversation but I mostly just remember holding him from behind and weeping. The decision to let him go hurt so much and I didn't know when the end would be but I remember thinking this was our last year. Last Christmas, Valentine's Day, Birthdays, Easter, Father's Day, etc. One more chance to build memories before saying the final goodbye.

G had to pee so we got out of bed. He had a hard time getting down the hallway. His legs were so weak. I remember him telling me he couldn't stand to use the bathroom so I told him it was okay to sit. But then he was worried his legs were too weak to get back up. Somehow he pulled himself up off the toilet and was able to wash his hands without me going in to help. I stood in the hallway talking with him and texting friends and family for prayer. SOS. Texted my pastor too. Something was really wrong but G refused to go to the hospital and we were calling in hospice. My friend K offered to come play with P and I took her up on it.

Somehow we got G downstairs (I think he walked down slowly but okay) and into "his chair". After piling him with blankets (he was so cold) I took a picture of the "B Boys" and then a selfie with me in it too. Our last family pictures.

UT asked if we should have G's mentor R come over. I didn't even thought of it but said yes. K arrived at some point and P went outside to play with her. UT was able to get R on the phone and he headed right over. UN left to get medications that hospice ordered in advance of their arrival.

(I need a break from writing this and will continue in a new post later today)