For years Sten and I have been afflicted with “Sunday Night Depression,” that sense, as Sunday afternoon wanes into Sunday evening, that the relaxation and freedom of the weekend is soon to be replaced by the rigors of the week. Last night was to be honest an exceptionally hefty dose of Sunday Night Depression. I kept trying to remind myself that I should be excited to be so near the end and to be beginning the final round of chemo but I just kept feeling sad that our life at home was quickly coming to an end and I was feeling pretty grumpy pants about having to live in the hospital again. I rushed around the house trying to pack bags for myself, Allistaire and Solveig who will be at my parents the next several days. I tried to remember all the things that I would need to live life in a foreign land. Even gathering my survival gear made me grumpy. It honestly wasn’t until about 11pm last night in the last half an hour before bed that I thought, “Oh good grief, this is useless, just charge it Jai, just stop contemplating how life will be different in all sorts of ways you’re not happy about. Put your head down into the wind and just go for it. Don’t look to the left or the right or behind or before, just stride strong into the reality of the next day.”
That mental cheerleading worked pretty well until I saw our room; until I started trying to put things away in the tiniest room there is on the Unit, approximately 3 feet (literally) away from the single most noisy nurses station on the Unit. I didn’t rush trying to put things away. We’re going to be here awhile I kept reminding myself. No need to rush. I’d sort of encouraged myself into accepting the reality of the room until I discovered that the hanging curtain in the room only separates the room from the door to the hall. This means there is no curtain that can be pulled between Allistaire’s crib and the bed-in-a-chair where I will sleep. This means that Allistaire will not only be a few feet from me at night but she can see me directly. I will have no privacy from nurses at night, nowhere to stealthily take out my contacts, nowhere to retreat from Allistaire’s observant little eyes that will undoubtably want to call out to me. As the hours progressed the pressure on my left side increased and now resides as a constant ache in my face, neck and shoulder.
There is one lovely thing about our room, no, make that two. There is one small window but it faces west out into a courtyard sort of area and there is a glorious flow of sunshine into the room. There is also a view down into a play yard where kids can play ball. Allistaire loves this and already spent some happy time standing in the wide window sill watching the kids, standing in the warm sun.
Once Allistaire went down to nap, I already yearned to escape from the hospital. This was probably intensified by the utterly glorious warm sunny day outside. With all of the cherry trees blooming everywhere, I assumed those in the Quad at U.W. (University of Washington) were probably out in glory too. I decided to throw frugality to the wind and drive just up the road to park on campus. A day like today is reason alone to be a student at UW. The cherry trees were magnificent and it was as if all the world had come out to enjoy them. I sat on the stairs overlooking the Quad and enjoyed my lunch in the warm sun.
I returned to Allistaire’s room 3 hours later expecting her to be up any time. Apparently she spent the first hour of her nap chatting to herself and so she was still fast asleep. In the subsequent hour I met two significant families. The first family brought odd joy and the second brought, well I’m not sure, terror, fatigue, mourning, weariness, fear, soberness. The first family has only been here a few days and are in the throes of trying to get an accurate diagnosis and wrap their minds around what is ahead of them. The joy came when I learned they are from Bozeman. To know the street that they live on, to imagine the vast green fields of the sod farms near their house, to know the building the husband works in, to remember those early days and all the unknowns and all the fears – it bonds you. It is an odd joy to be of the help even if only in very small ways. We live in a world where there is so relatively little we can do anything about and have any control over, and it is pure pleasure to be able to encourage or provide in the little ways that pop up. The second family has a 6-year-old daughter who is here to be treated for AML, just like Allistaire, only this is 3 years after the first time she was here. Like Allistaire, “she flew through Induction,” meaning she went into remission after the first round and did great. Now, almost exactly three years later, her cancer has returned and she is getting more chemo and will need a bone marrow transplant. My face fell as her father relayed these things to me. It is like being punched in the stomach, like suddenly loosing your breath. And then I continue down the hall and I desperately want to believe Allistaire is in the 50% that are still cancer free after 5 years and I know that no matter how much I want to believe this and no matter how much I love her, no matter how bright and cheery and wondrous is her spirit, none of this protects her from the possibility that this little girl’s reality may be Allistaire’s future. How many times, I wonder, will I barely get my head above water before I find myself being tugged down again? “I cannot handle that God,” I cry out silently. I don’t want to be here and I don’t want to hear these stories and I don’t want to know the possibilities and I just want to have my life back. I’m tired and it’s only the first day.
I guess it really is true that I must walk this life one single day at a time. I know this but it is still so foreign to me, so contrary to my natural way of living life and I have to learn it over and over and over. God gave manna for a day. I must come before God each individual day and bend my knee to Him, to submit to Him each day and hold out my hands and look into His face and ask Him to help me this day, to be close to me this day, to show me the way through this one day. This process started four months ago for us and I am still such a newborn to this new way of life. I so very much want to learn the habit of this, to have it become ingrained in who I am, to not be startled over and over but to have it be the flow of my being to be ever looking to the Lord. In elementary school I read a book about Pocahontas and will always remember the description of how Pocahontas and her people would greet the sunrise each morning and speak to the great creator. I think of how Muslims stop and face Mecca three times a day to reorient themselves in prayer. For most of my life I was fairly opposed to tradition and ritual, thinking it empty and void of sincerity; simply a thing to do because it had always been done. Since attending our church here in Seattle, a delight for ritual has begun to seep into my being. I have come to see that tradition need not be merely actions repeated over and over, but a powerful way to regularly reorient one’s ever drifting life to the things upon which we stake claim. I have no grand plan, I have no idea what I will do but I hope to find a means of establishing tradition in my own personal life which will aid me in turning my face back to the warmth of my Fathers radiant face throughout the day. I suppose I have an inkling of what this might entail but I wait on the Lord to show me the way even in this.
It’s 11:35pm and I only put Allistaire to bed one hour ago. A little after 9pm tonight we were able to move rooms, right next door to our old fish room and to a room with a nearly identical configuration. As I rushed to unpack for the second time today, Allistaire had vitals taken, detested eye drops given and her second dose of chemo started for the day. I am so thankful for this room and for the speed with which God provided such a wonderful alternative to our original room. I’m off to bed in hopes that I can somehow fall asleep and miss the next round of eye drops that will take place during midnight vitals.
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So glad you got a better room. I was really hoping that you would get your same room back for the last visit. Hopefully Allistaire will do well and you can be out of their for good. Will pray that you never have to go back and Allistaire will stay in remission for life. Will pray that this last stay will go fast for you and you will be able to handle everything that comes your way.
Jai, I am praying for calmness and peace that only our sweet Jesus can provide.
Jai, thanks for your note to me. So special that you took the time. Thankful, as well, for your sharing of what it has been like in your return to the hospital. How good our God is to be there each step of the way. Continuing to pray for your family during this time. We trust you will be aware of His love and presence during this week as we remember His death and resurrection. Have a Blessed Easter.
Read this morning and have been praying for you today! So glad to know we aren’t the only ones to suffer from “Sunday night depression” but I love it that you named it:). So amazing that you met peeps from Bozeman! How awesome is that?!? And I bet you were such an encouragement to talk to as they are new there. I was thinking about what the other people said. So hard…this issue of control over our lives and living with open hands. I like to be naively optimistic most of the time… Try not to think about all the what-ifs and just assume that life will work out. Like, to just think that Allistaire will stay in remission for the rest of her life. And if she doesn’t, then God will strengthen you at that time. However, I think if you constantly consider the possibility of that it will only darken your todays. However, easier said than done, and I am praying for you… For peace and a lightness of heart. It’s funny sometimes because we went through the hard thing of my sickness last year and now live in a totally different state… A lot can change in a year, huh? It seems so far away sometimes and almost like a lifetime ago even though it was only months. Soon, you will be on the other side of this… Praise the Lord! I think you’re an amazing person and an example. I know God has blessings in your future and I’ll pray for open hands even in those times of goodness. Hope you guys have a good night:)
Christy – as always, thank you so much for your encouragement and prayers! I am trying not to dwell on the what-ifs but literally you can walk 10 feet and inadvertently run into yet another heartbreaking story. I want this wretchedness to a be a blip in our life but I see that there are so many people who live years upon years with immense challenges and I question why I should have it easier. Anyway, again thank you for your sustaining prayers. How is life in Texas?
I can’t even begin to imagine how difficult that would be… To hear those stories every day. I want to apologize if I came off sounding ” preachy” in what I said. I, obviously have no idea what it would be like to walk what you are walking and can imagine tha daily struggle of emotions. I think you’re doing a great job. I’ll keep praying for you:)
Texas is good… Did you hear about the tornado yesterday? Scary! I was in the bathroom with all three kids while the sirens were going off for 45min. It was awesome…haha. So grateful that it didn’t hit us though and we only had a huge thunder storm. Other than that, I we are adjusting. I LOVE the warm weather and living outside more with my kiddos! We’ve been in their blow-up pool for the last 2 weeks. Caleb is adjusting to school, but it’s been hard as we went from 3 hr days to 7 hr days. I hate how long it is! I’m trying to figure out what to do for school for him next year. What are you doing with Solveig? Is she going to be Kindergarten? I’ve thought about your advice to not say yes to everything at once… Good advice and a good reminder:). We’re trying to find a good church right now and love the one my brother goes to, but it’s 35 min away, so we’ll see.
I’ve got to run and bring Caleb to school. Hope you guys have a good day. As always, prayers for your whole family:)