The Is No Handbook
Not only is there no handbook, there are no maps to know how to navigate the days in the life of a mother whose daughter needs both a liver and and a kidney transplant to live.
On January 1st of this year, my daughter Amy and her husband Jewett drove the nearly one hundred miles from their home to mine so we could have lunch together and exchange our Christmas gifts. Amy gifted me with thoughtful gifts wrapped in creative ways just like she always does, and she made sure I had the t-shirt I asked for, the one like Taylor Swift wore on her Eras Tour.
I look back on that photo and think, “I had no idea about all of the things that I would have going on during 2024. NO IDEA!” I note that in the photo Amy is nearly sidelined. Her husband Jewett is behind me, and our beloved golden reliever, who we lost five months later, is front and center as I hold up the t-shirt that says, “A lot going on at the moment.”
On my mind that day was how Amy was clearly not well. She had gained over thirty pounds in water weight since I’d last seen her in late November. We did not know what was wrong with her. She was seeing doctors and had just been to a nephrologist. She’d already been hospitalized and had been receiving blood transfusions because of anemia. I could not believe what I was witnessing when I looked at her. I kept trying not to think that she looked like she was experiencing kidney failure. I could not however ignore the signs. Clearly, her kidneys were not functioning as they should be. It was shocking and unbelievable to see her so ill so suddenly.
My mind was also focused on the next day when I would enter the hospital to receive a Watchman Implant.1
January gave way to February, and I wondered if things could possibly get worse for my daughter, but it seemed she was spending more days in the hospital in February than she was able to be home. The doctor was trying to stabilize her kidneys enough to be able to do a biopsy so they could determine what was going on with her.
I was grappling with how her life was changing in ways none of us ever could have imagined. I struggled with the unfairness of it all for her. Her fiftieth birthday would be here in a few weeks, and I knew she wanted to have great big celebration. Instead as winter gave way to the first vestiges of spring, as grocery stores became colorful places with Valentines, and red roses, and pink tulips, and yellow daffodils, she remained in the hospital wondering when she’d get out and if they’d find a way to get her “kidneys happy” again.
Seeing the tulips and daffodils broke me. She usually is the one sending me a bouquet of daffodils for my birthday this time of year. She forgot my birthday and was devastated when she realized, but I barely noticed because I was not in a celebratory mood myself. In my journal, I wrote:
Being a mother is excruciating at times. A mother’s heart is most broken when she sees her children suffer.
There is a helplessness I have keenly felt since Amy became ill. That might be the worst part. The helplessness.
Entering a new wilderness…
There are signs in hospital corridors that jolt me into a reality I did not see coming.
In February, I went to see my daughter in the hospital, and as I entered the hallway that lead to her room, I saw an arrow that pointed towards dialysis. At that point in the journey, I feared my daughter would have to go on dialysis. Surely that won’t be her life, I kept assuring myself. Surely those creatinine numbers will come down. Surely this will all change for the good soon.
On a Sunday morning in mid-February, a phone call came from Amy. She was still in the hospital and said she was doing her make-up. Then she said she would be going into surgery the next day to get a port so she could begin dialysis.
I tried to keep a calm tone in my voice as I told her I was praying for angels to minister to her even in the embodiment of the nurses that would attend her. I then joined my husband in a restaurant for breakfast and cried ugly tears as I told him the news.
The next day, I wrote in my journal words I needed to encourage myself:
The wilderness is a place where we are left to wander as we seek to find our way in terrain we have never encountered before. Deserts and wilderness can quickly become places where we don’t know how to find the resources we need to survive living in that new place.
And yet there is provision in those places. There is a well somewhere. There are angels. There are miracles, seen and unseen, but often we are so deep into the wilderness of our own grief, hurt or illness we can’t see them. It is not until later that we realize we were always provided for in some miraculous way.
Remember, there is as it says in the Book of Hosea2, a place3in the wilderness where God restores you, speaks tenderly to you, and makes the Valley of Achor a door of hope. The troubles of the past are reversed and filled with blessing.
I began to see dialysis as that resource that would give her what she needed to get well as the doctors looked for other medications and ways to help her heal from what turned out to be an autoimmune kidney disease.
Amy celebrated her fiftieth birthday in early March, and we had a small family celebration for her. By the end of March, I was noting in my journal, “March was such a long slog to get through.”
April brought another turning point, in a direction that showed that Amy was becoming increasingly more ill. Now, her liver was failing, and she was experiencing scary symptoms of liver failure.
It may have been the very hardest month for me in this entire journey of being a mom to Amy during her illness. There is no need to recount all that we experienced and learned as a family during that time. It is sufficient to know that April is when we first learned that Amy would need both a liver and kidney transplant to ever get well. I’ll never forget the shock that such news delivered.
Spring arrived. Flowers began popping up. Trees were in bloom. All I wanted to do was to join my daughter in a chatty carefree walk to the coffee shop near her home. I wanted to do that, and I needed to believe that one day we would do that again.
That girl is resilient.
In mid-May she asked me to come up to her house to help her plant her gardens and pots of flowers. I leaped at the chance to spend some time with my girl. She greeted me at the door in a beautiful summer outfit and we walked the town square where they were having a street fair. We ogled over plants, talking of what would look good planted where, and then went to dinner later. The next day, I planted one raised bed, but she managed over those days when planting happens to either direct her husband as he planted things for her, or she sat on her perch on her patio and planted all her beautiful pots.
Entering a territory …
Last week, the sign in the hospital corridor said it all.
We were clearly at a new juncture in this long journey towards Amy receiving the new life saving kidney and liver that she needs.
My oldest daughter Keicha and I found our way to the seventh floor of Outpatient Building Two for the University of Colorado Transplant Center - Anshutz Campus. We were there to meet with the team of people who would be evaluating whether or not Keicha would be the very best match as a live liver donor for her sister Amy.
It was surreal to be there in so many ways, and also it also felt like the next step in a progressive journey that brought us to a new crossroads.
The uncertainty has not gone away. We are learning to take it all one step at a time.
Keicha was poked for blood draws and I.V’s; she had CT scans and an hour long MRI. She had the health check-up of her life. It took two days to have the tests, meet with the coordinator, the social worker, the psychologist, the donor liver surgeon.
Amy happened to have an appointment at the same place in the same time frame. I met up with her in the waiting room while Keicha was speaking privately with her own hepatologist. Earlier we both had met with her liver surgeon, the one who will take the right lobe of her liver and pass it on to be transplanted by another surgeon in Amy. God willing. Keicha is still are not completely 100% cleared for that to take place. We will know for sure later this coming week.
Amy’s husband Jewett is also nearly 100% cleared to be the kidney donor.
There is no handbook for moms for any of this. I guess I’m writing my own day by day. Trust. Hope. They have been the guiding forces in all of this. I’ve called this a loaves and fishes kind of story.
4 I’ve trusted the Provision of God for all that will be needed along the way. And he has and is provided donors, great insurance to pay for medical needs, people who have donated money for travel and accommodations. We are in the very best place for amazing, gifted, kind, and competent doctors who have done organ transplants thousands of time. This is a first for us, but it not a first for them. I will be forever grateful for the University of Colorado Transplant Center at the Anshutz Campus in Denver, Colorado for the care and concern and kindness they have shown me and my precious family members so far. We hope to soon move forward to surgery. We do so with much hope.
I had the Watchman Implant because I had recently been placed on blood thinners for life because of the high risk for stroke that I had because of AFib. I did not want to be on blood thinners, so my doctor said I was an excellent candidate for such a device. It was a relatively simple procedure, and I am grateful to have had it done.
Hosea 2:15
My word for the year is place.
Matthew 14: 17 - 19 - Jesus fed the five thousand, besides women and children with five loaves and two fish, and there were twelve baskets full of the broken pieces leftover.
Calling on the Angels to surround your family with strength and healing.
Standing with you in prayer, Sally.