My Fear to Hope, My Sorrows unto Joys
The Third Part of King Henry the Sixth. Act IV. Scene VI.
The air is turning cool, there's the unmistakable feel of the coming fall even though the calendar says it's still a few weeks away. The faint smell of burning leaves hits my nose as I step out to the porch. I need a breath of fresh air; things are getting too close inside. Too many people, too many emotions, too many memories. I glance over my shoulder, hoping nobody will follow me outside. I need some time to myself.
I curl up on the porch swing under the ancient plaid quilt. I'm not sure where it even came from; it may well have been a wedding present, which means it is 50 years old.
Fifty years of marriage.
Forty nine years ago that seemed unattainable.
Now fifty years seems too short.
Six months ago we had a big party at the Josiah E. Bartlet Presidential Library to celebrate half a century of marriage. Next year I will mark the occasion alone.
It's been about 6 weeks since Jed's doctor told us to get things in order and prepare for the end. The decades of MS have ravaged my husband's body, leaving him weak. He's suffered 2 heart attacks and a mild stroke in the last year. There's only so much more his body and spirit can take. In my heart I know he's ready.
And I'm doing my best to get myself ready for the end.
Years ago we made the decisions nobody wants to think about having to make, no heroic measures, no machines and most important to Jed, no syringe in the nightstand. Things got messy and that's just the way it was. We faced everything together, just as we've done for over 50 years.
The farmhouse has been alive with activity in the last few weeks. Family and friends have come in a steady stream to say their goodbyes. Although he's been very weak, Jed has been lucid enough to have short conversations with everyone, he recognizes people and that makes everyone feel better all around.
People want to do "something" to help. As a result of that, the kitchen is absolutely overflowing with food. I don't think I've cooked anything in almost 3 weeks. I keep sending food home with our visitors.
For the past few weeks people have read Jed the newspaper, passages from his favorite books and scriptures from the Bible. He's watched old home movies and his favorite DVDs. Music fills the silence of our room when he's alone.
I turn and glance towards the front door as I hear it close behind someone. Father Tim takes a hesitant step towards me. I scoot over a little on the swing, giving him room to sit down.
"The girls are in with him," he says as he pulls his hands into his sleeves. Casually dressed in jeans and a hooded sweatshirt Father Timothy Phillips looks more like a soccer coach than a recently ordained priest. He's been at Sacred Heart for almost two years now, although he looks like he's about 16. But young or not, he's been a source of strength and comfort for Jed and I, as well as our family.
"Is he asleep?" I ask as I tuck my feet under me and face Father Tim.
"I don't know if we'll make it until fall," I whisper as I fish a tissue out of my jacket pocket. "He's so weak. But I think he's ready."
"I think he is too. We haven't talked arrangements in a few weeks, are things basically in order?" Father Tim asks.
"As ready as they can be, until…."
"I understand," he says with a sad smile. He pats my hand as he gets up and paces the length of the porch a few times.
Six months ago, when we were planning our anniversary celebration we made plans for another celebration as well. The plans for Jed's funeral and burial have long been prepared. The location, scriptures and music have been chosen, pallbearers are in place and the burial spot in the Bartlet family plot is ready. Maybe some people think making all these plans is morbid and maybe it is, but Jed wanted to be involved in the planning of his final send off.
There were many who were pushing for a service at National Cathedral but Jed resisted having the actual funeral there, but there will be a memorial service there some time in the weeks after the funeral.
Also nixed was the idea of being buried in Arlington National Cemetery. "I'm a Bartlet and I'm being buried with my family," Jed declared months ago. So he has a space in the family plot and will be buried next to his parents and his brother.
"Mom," Zoey calls from the doorway. "Dad's asking for you."
"I need to get going," Tim says as he motions towards his watch. "Call if you need anything."
"Thank you Father," I say with a smile.
"Mrs. Bartlet, when you are going to start calling me Tim?"
"When you stop calling me Mrs. Bartlet," I tease. It's an ongoing joke of ours. I hold my hands out to Father Tim and we say a brief prayer before he turns towards the driveway.
It's a rare evening alone for the two of us. Zoey and Charlie took the kids into town for dinner and a movie. Ellie and Vic headed back to Baltimore having once again said their goodbyes to Jed, just in case. Elizabeth has been home for a few days and will return tomorrow morning to take over the watch. The girls took it upon themselves to make sure Jed and I are rarely alone. We love them for it, but every once in a while we crave some time to ourselves, which is why I insisted Zoey, Charlie and the kids go out tonight.
"What do you want to do?" I ask Jed as I wipe the last of the dinner dishes and fold the towel over the edge of the sink. He just wags his eyebrows at me and smiles. I roll my eyes at him as I lean over and kiss the top of his head. "What else do you want to do?"
"Go outside," he says after a moment of contemplation.
His request doesn't come as a big surprise. It's been nasty, cold and damp most of the week and he's been cooped up inside for 5 or 6 days now.
"You want me to start a fire?" I offer as it is pretty chilly outside. Years ago the kids built a small fire pit in the side yard. Zoey's kids had a fire a few nights ago with some of their friends so I shouldn't have too much trouble getting a small one going.
"Do we have marshmallows?" Jed asks as he starts to stand and go to look in the cabinet himself. I move his walker over so he can reach it. He waves off my offer of help. Losing his independence has been the hardest part of this whole thing. His doctor and I would prefer he use the wheelchair but Jed's stubborn about it. He'll use it when we leave the farm but he would rather shuffle slowly through the house with the walker. But that's fine, it's not like he's going anywhere in a hurry and the house isn't exactly wheelchair friendly, although some modifications have been made over the years. Sure there have been some days lately when he's forced to use the chair and even a few when he's been completely bedridden. Today's been a fairly good day; he spent much of the afternoon out of our room, in his study and the living room. He ate more than usual and was able to talk to a few people on the phone. "Success," Jed calls as he finds the hoped for treat in the back of the cabinet.
"Why don't you watch the news for a few minutes while I start the fire and get you something warm to wear. Are you walking outside?" I ask as I point to the walker.
"No, I don't think I'd get back up the ramp," Jed says with a hint of resignation in his voice. If we hadn't been home alone he would have probably used the walker, figuring he'd have more help than I can give him, should he need it. But being home alone has some tradeoffs and we've come to accept them.
"I'll be back in a little while," I call over my shoulder as I grab my cell phone off the table by the door. Jed has his phone in the pocket of his shirt; he never leaves my sight without it.
"This is nice," Jed whispers as he licks the sticky marshmallow off his fingers. The fire is crackling away, the stars are coming out and we are alone.
"It is. Do you want another one?" I ask as I point to the bag of marshmallows.
"I think three is enough," Jed mutters as he scoots himself back into the lounge chair. I think three is enough too, but it's gotten to the point that I'm thankful for anything my husband can eat. Tossing aside the stick after poking the fire a little to keep it going, I snuggle up next to Jed. The chair is not exactly made for two but we make it work.
"Are you afraid?" Jed asks, out of the blue. Random questions come more often now as Jed has trouble concentrating and focusing at times.
"I'm afraid of being alone in the end, I'm not afraid of it happening. What about you?" I whisper as I pull him just a little closer.
"I'm afraid of it happening in an awkward place. I mean, I don't want to die like Elvis," Jed says with a laugh that shakes his body. It's a nice sound to hear, one I don't hear nearly often enough anymore. "Something a little more dignified would be nice."
"In your study with a glass of scotch and a cigar?" I suggest with a small laugh of my own.
"Or in front of the television, watching the next President being inaugurated," Jed sighs. "But I guess that's just a pipe dream," he adds quietly, knowing that event is over 4 months away.
"Probably, but I have no doubt you'll be watching from where you are," I assure him.
"What's the thing you hope for most?" Jed asks as he shifts restlessly and accidentally kicks me in the shin.
I reach to rub the spot as I think about how to answer his question.
"I hope the American public gives our family the space and consideration we all deserve. I don't want things turning into a…."
"Three ring media circus," Jed whispers against my cheek.
"Something like that."
For the most part over the past decade we've lived a very private life. That changed a few months ago when Jed had a stroke during a rare visit to Washington DC. There was yet another hearing on stem cell research in front of Congress and Jed had testified. He had been approached by the National MS Society and had agreed somewhat reluctantly agreed to speak before Congress. One night while having dinner out with Josh and Donna in Georgetown Jed collapsed. The whole incident was much more high profile than either of us had imagined and Jed begged the doctors to release him and allow him to recover at home.
The last thing Jed and I want is a repeat of the media frenzy.
We've made arrangements with NBC to cover the public funeral. Dateline did a small feature on us two months ago and the Today Show called yesterday. I have yet to call them back; I haven't even mentioned the call to Jed.
"My hope is that we can do things on your terms, my fear is that we won't be able to," I say as I brush back Jed's hair and plant a kiss on his forehead.
"That's my hope and fear too. Should we take Josh up on his offer?" Jed asks.
A month ago Josh approached us with an offer to come up when the time drew near and to act as the family spokesman, the gatekeeper and the liaison to the media.
"At first I didn't think we needed it. But I think maybe it will be a good idea," I answer honestly.
"When should he come?" Jed asks, his roundabout way of asking me how much time I think he has left.
"I don't know. But I think when the time comes, it'll be clear," I try to assure him, even though assurance is not something I have a lot of at the moment.
"I'll trust you to make that decision, if I can't," Jed says sleepily.
I know we should head back in; he's tired and more than ready for bed. But I am way too comfortable at the moment so I pull the blanket over us a little more and wrap my arms around my sleepy husband. There's no need to rush inside after all, we're on our own timeline now.
The next two weeks pass by mostly uneventfully. Most people who want to come say their goodbyes have come and gone. We check in with everyone by phone and Gus has even started a blog to keep everyone updated on Jed's condition.
Days pass by lazily, just as we had hoped.
Earlier in the week Jed stumbled while walking with the walker down the hallway. He caught the toe of his sneaker on an uneven oak floorboard. He managed not to go down completely but the incident scared him and left him sore and shaky. He's spent the majority of the last three days on the leather couch in his office, alternately watching television and listening to music. His eyes are bothering him so it's been much more music than television.
I just checked on him a while ago and he doesn't look well. He's pale and didn't complain at all when I took his vital signs, which were not all that impressive. It's been all but impossible to get him to eat much of anything in the last few days. We're just trying to stay one step ahead of IV fluids, something he will protest fiercely, should it come to that. His doctor came by to check on him this morning. We talked about options for pain, nutrition and general comfort. Jed participated in the conversation as much as he could. The last thing I want is for Jed to feel like we are making decisions for him.
By late evening I've given up on getting Jed to eat anything and I'm starting to force fluids as best I can. We're home alone and maybe I should call Zoey or Elizabeth to come over but they were here yesterday and the last thing Jed and I want them to do it to put their entire lives on hold, waiting for the inevitable. Father Tim stopped by earlier for a quick visit and I've spoken to Toby and Sam on the phone. I haven't called Josh in a few days and I really should. But at the moment I'm trying to decide if I should have him come up. All along he's said he would drop everything, when the time comes. The freedom of early retirement and live in help for his boys give him the flexibility he may very well need in the coming days and weeks.
By midnight Jed's vitals have deteriorated even further and I've spoken to Josh. He'll arrive in the wee hours of the morning. The girls are on their way also, all but Ellie should beat Josh here.
This is quite possibly the last few hours I will spend alone with my husband. At the moment he's sound asleep but we're in the bed we've shared for 50 years, in the home we've shared for 50 years.
I could never in a million years hope for more than that.