Early last week, I was getting myself ready for the day, Covid-19 quarantine just beginning, makeshift homeschooling plans, new information unfolding on restrictions, just coming off from a week of vacation in Florida, pregnant, and giving a modest effort to try to feel sorry for myself, when it struck me how oddly familiar a lot of this felt; I had this raw moment where I realized I had done much of this before. The circumstances were different–it was just our family with a terminally ill child–but for us, it looked similar to what we are doing now…only it was harder. We had this perfectly formed child who had inadvertently mutated his blood and we were waist-deep in uncharted waters, trying to keep him–and our family–afloat. We were quarantined in a hospital much of the time, while life marched on around us. Every Friday, much of the staff would do a final round before proceeding out the door to go back to their regular weekend plans of social gatherings, catching up on cleaning, sleeping in, date nights, ball games…all the luxuries of life. We would still be there, doing the same routine, watching the same numbers on Reece’s monitors, praying the same prayers, wishing things could go back to normal. We were “socially distanced” for six full months. Only a handful of visitors were allowed during that time. I remember feeling completely trapped.
The winter of 2012 was unusually warm–people were outside in shorts in March (and not just the few crazy people who decide every winter to wear shorts once the temp pops up past freezing). People were shedding their coats, runners were loving the early running season, even Mother Nature was confused when the flowers bloomed in early April. Yet we were stuck in a hand-sanitizing, don’t-you-dare-cough-in-this-room medical stupor, with no end in sight. It might as well have been Antarctica for all it mattered to us. The full size windows across one entire wall of Reece’s room brought in glorious sunshine and also ushered in the sights and sounds of regular people doing regular things, experiencing a beautiful spring that felt like a dirty joke, as the days wore on.
I couldn’t even say it was easier, during that time, from a pregnancy perspective…I was pregnant throughout Reece’s transplant with Scarlett, my third child, and delivered her three whole days after Reece’s initial discharge from the hospital.
When Reece was discharged to our home for a month and a half, everything was a threat to his health. If we wanted to go on a walk, we avoided freshly mowed lawns, leaf piles, construction areas…things that were nearly inevitable in the springtime in Minneapolis, Minnesota. We took him to the clinic nearly every day, navigating the normal routines of healthy people, which seemed nearly impossible with his level of needed care. We tried to maintain distance in waiting rooms, with Reece wearing a thick, uncomfortable mask. People stared at his appearance, not understanding why he looked so strange. I tried to have grace for others, but spent a lot of my day exhausted, trying to brush off ignorant stares and whispers, completely frustrated that we were discharged and not in the safety of the hospital bubble we so desperately felt imprisoned to for so many months.
Managing Reece was a 24 hour job–he took around 90 doses of medication a day that were administered orally. Medications that you likely have never heard of and that have thankfully faded from my memory over time. We administered fluids and a few medications intravenously. We changed his Hickman line dressing (which I later learned from my OB was a full class in med school, as it requires a sterile environment to be done). Yet we did this in our home. We rubbed thick steroid creams all over his body multiple times a day to try to manage his GVHD. We had an oxygen machine for him to use when he slept, his lungs still struggling from his pulmonary hemorrhage. He was constantly cold, so we had dozens of thin, cotton hospital blankets we would warm in our dryer continually throughout the day to keep him comfortable and warm. His muscles were atrophied, so we had to do PT exercises–he was so tired and dreaded doing them. Even going to the bathroom was a process. We prayed that his blood transfusion from a Friday would sustain him until a Monday. Our home felt like a prison. Plus we had a newborn. Britta–then two–was living with my parents during this time.
My dear friend Suzy (who has her PhD in education and spent years homeschooling her kids) and I had spent a month leading up to Reece’s hospitalization preparing 8-10 weeks of homeschooling modules. Each was carefully designed for Reece’s hospital limitations and catered to his age level. I was so prepared. I was going to homeschool my son and when he got better, he was going to look back and be so glad we had that time together. I was going to win. He completed the first week in the hospital and never took a second glance at the lessons thereafter, having felt too ill to have any interest. In June, Reece coded in the hospital after several days of treatments to try to wipe out his T cells and “trick” his immune system in an effort to rid his body of GVHD. That first night, after placing him on life support, I came back to our house to rest. In pure frustration, I dismantled the entire plan. I unpacked all the supplies and threw out the papers. I made a pile of things to send back to Suzy. Though Reece died about two weeks later, somehow, that evening, I knew all of our planning no longer mattered. I knew this was it. I was done. I threw all of his meds that lined an entire kitchen cabinet–top to bottom–into the garbage. If he ever made it back to our house alive, it would be months down the road. We would need different meds. I was done. I had lost.
During this Covid-19 outbreak, homeschooling and playing with my four, healthy, surviving kids and managing them while pregnant, is easier than that. One non-functioning immune system is harder to manage than six robust immune systems. Four kids that are healthy enough to argue with each other and chase each other around the house and complain of boredom from time to time are easier than my Reece when he was a terminally ill, immunosuppressed child. I’m not saying these days are easy or without challenges, but these days are a flavor of what those days were like and I’ll take the healthy version of social distancing any day of the week. And I’ll distance myself for those who do have immuno-compromised loved ones. I will distance for the sake of those who need us to distance. In that moment last week, I was quieted and relieved of the temptation to feel sorry for myself. Really, it has been enjoyable for us to be home together. I needed that wake-up call. It could be–and is for many people during this strange pandemic–so much worse.
Reece would be 13 today. It feels so good to say his name. To type his name. I miss him so much. But missing him has changed over time. I love him with the same intensity, but I think of him differently and I miss him differently. So much of my life has changed and Reece is no exception. Our kids miss him, not even knowing what they miss but knowing he is gone and feeling the loss. We talk about him nearly every day, we pray for God to hug him for us, we include him in our discussions about our family; sometimes we cry, but not nearly as often as we laugh and share stories about him. Most of the time, we imagine what it would be like if he was here, which naturally turns into a discussion about seeing him in Heaven. My family spends a lot of time talking about death, but not in a morbid way. Death has been a big part of our life.
I’ve had to accept some hard realities about Reece. It was a lengthy process to come to terms with the fact of the concept of natural selection. Even if Reece had been a “long term” survivor, I believe he likely would have passed away by this point. He wasn’t going to be here a long time. Other people, today, have their 13-year-old kids; I do not. That took several years to come to terms with. It took several years to say that he “died” versus “passed away” or “went to Heaven”. I wholeheartedly know he is in Heaven, but his body died. That was hard. It was hard to part with the home I lived in with him and many of the friendships that have drifted away after loss–those that knew Reece that I no longer am in contact with. That hurt a lot. It was hard to come to terms with being around kids his age. Sometimes it still is hard, but not in the same piercing way. It’s still hard to remind people that I have a son who is my oldest. No, it is not Britta. It is Reece. He still holds that place. People give me funny looks when I correct them. They say, “Yes, but now, Britta is your oldest…” in whatever context they are referring. Ah. No. Nope. She is not. Just like your college-age child or grown child or deployed child is still your child, so Reece is still mine. And any day now, I’m going to see him. It’ll be a flash. So please, stop brushing past him and writing him out of my life. Grace, grace, and more grace. God, please give me grace.
But as I reflect on what my life looks like now–my marriage and kids and the way it is all woven together, it is impossible to imagine things to be any different. I’d have to eliminate people that I love on either side. So I press forward with a hope of a day when we are all together and that day does not exist this side of Heaven. One thing I can say with absolute certainty is that I do not spend a day worrying about him or how he is doing. I do not question where is at or if he remembers us or if he is doing OK or if he is safe. I know where he is in the same way I know where my other kids are at, I just don’t get to see him…today.
I know I’m learning a lot already through this extended time of social distancing. One thing I know for certain is that we will all change from it in some way and that is not a bad thing. There is no going back to exactly what life was like before. It may not be drastic change for every person in the long run, but there will be change. And that’s OK.
Happy Birthday, Reece! We will see you one day and hug you ourselves. Until then, we know where you are and we are okay here and that’s enough for this day. xoxo Mom
“Forget the former things;
do not dwell on the past.
See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the wilderness
and streams in the wasteland.”