Yesterday was a one of the more difficult days during this season. Today wasn’t significantly better.
Yesterday the doctors came into Jeremy’s room, heads down, clearly concerned, telling me they believed based on everything they were seeing in Jeremy that the disease was progressing in his brain. It was a shock and I wasn’t prepared for it, especially after last week when the same doctor visited him in the ICU and reported that in spite of his infections and fevers, the cancer was going away. The chemo was working. So how was it that now, just a short time later, the doctor could say such things and based on what information?
Today I had to give permission for them to remove a portion of my husband’s brain in the hopes it either confirms or officially denies the presence of cancer.
Regardless of the things that have played out over this past week and any thoughts or feelings I have about the care Jeremy is receiving, the way the doctors address their concerns (process of elimination) or this latest development, it is very hard. This whole thing is excruciatingly hard.
It is incredibly hard to wake up in the morning and get three kids dressed and ready for school or childcare all by myself. It is hard knowing they will be in school then childcare most of the day – so different than what Jeremy and I had wanted before all of this came to be. It is incredibly hard picking them up at 5:30 when they are very tired and I’m equally tired. Most nights we all have total melt downs. Half the time I don’t have any energy to make them a wholesome meal. One night we had bagels with cream cheese. Another night we had whatever prepared snack items we had in the house: cheese sticks, gummy not-real food wannabe fruit treats, apple sauce. It is hard to summon up the energy to read to them or spend any quality time together. It is hard when we do spend quality time together, reading books and talking about our day only have the conversation come back to Jeremy. It is incredibly hard to have my five year old, with her big beautiful eyes, look at me and say “Mama, is my papa dying?” And as I try to keep my composure to answer her, telling her how sick he is and how important it is to keep praying for him, she looks at me and says “Don’t cry, Mama. I’ll pray right now. Please stop crying. I’m praying.” How hard and difficult is that.
It is hard to put the children to bed and know that I am alone, my husband isn’t home with me. It is worse to come home alone knowing I am leaving him behind in the ICU or an uncomfortable hospital room knowing he just wants to sleep in his own bed. And it is hard leaving my children with more childcare, less time with me, so that I can be in the hospital with him. This is all so very hard.
One of the hardest but less obvious parts is knowing that the kids and I are doing OK and we are moving on with life. They are learning new things, growing up, and have adjusted to not having Jeremy around. Our sweet baby has lived 30% of her life since Jeremy’s diagnosis and extended hospital stays. The culture in our home is slowly changing as a result of Jeremy’s extended absence. It is a silent wound that I don’t know is there until I look for it and then I feel its sharp sting.
Yet, in spite of this horrible road we are walking, I know there are so many out there walking a more difficult path than ours. There are so many out there without hope and love and support. I have the privilege of working in a faith-based agency that assists people in crisis. I know, I see it all the time, that there are people suffering from so much more than this. Our agency worked with a single woman with four children diagnosed with terminal cancer that had no local friends or family to support her, care for her, even drive her to her chemo appointments. How horrible is that? I recently read about another couple in which the wife was diagnosed with lymphoma while pregnant, delivered the baby, and the baby eventually developed a different form of cancer. Mother and baby both dealing with chemo at the same time. Mom was cured and the baby wasn’t. How horrible is that? I read about a man, younger than Jeremy, diagnosed with Mantle Cell Lymphoma a year after he was married while his wife was six months pregnant. He was in the hospital dealing with similar side effects as Jeremy is when his first child was born. How hard is that for both parents? And yet there are more difficult stories.
Before Jeremy was diagnosed one of his part-time jobs was to assist immigrants. I can’t tell you how many sad stories he heard about people wanting to be with their sick loved ones either by coming to the US legally or by getting a visa to travel to another country. I can’t even imagine going through something like this not being able to be with Jeremy, right by his side, every step of the way. That would be unbearable.
This pain we are experiencing now reminds me the pain of so many others, knowing others have it so much worse than even this. I’m ashamed at my lack of sensitivity and compassion in the past. I never knew how much these things hurt.
And yet our very difficult path is littered with miracles and beauty and joy. We are surrounded by love and have experienced a very rich community of support. A community of support that puts me to shame – people praying for us from all over the world, caring for us financially, providing meals, watching our children, making sacrifices. We are surrounded by love and it is amazing and wonderful. I am learning so much about mercy, grace and compassion because of it.
Our road is full of miracles both small and large. Every time I have been discouraged and things have been especially hard, I’ve been encouraged with either something small or large. Once I saw a rainbow on my way home from a difficult day at the hospital. Another time, I fervently prayed God would break Jeremy’s fever, one he had been dealing with for several days, before I arrived at the hospital. When I got to his room, his nurse took his temp and the fever was gone – it never returned during that hospital stay.
During my previous “lowest point” of this season, I spent a lot of time in prayer – how could I not? It was a handful of hard days. In the midst of it all, I felt quite literally that God was saying to me, “You silly girl. How many times have you cried out to me to spare you, to have mercy on Jeremy, you and your children? How many times have you called on Me to get you through this? Don’t you know everything will be OK? Don’t you remember the rainbow, the broken fever? Everything is going to be OK.” Yet here I am, crying out to God yet again to have mercy on Jeremy and on our precious children.
I know things are going to be OK, whatever the outcome. We will be OK. The children will be OK. For whatever reason we were called to walk this road, it is our road to walk and we must keep moving forward and it will be OK. This pain we are feeling is because of the love and joy we have experienced and been blessed with so far and in that respect it is beautiful. Things will work out according to a Divine plan beyond our understanding and it will be good. I don’t doubt any of that. Right now I’m keeping my eyes open for the next rainbow to get me through these days ahead.