On the one hand, they say that internet readers like to know a little bit about the writers they read. On the other hand, we could use some prayers, and I write this page for prayerful people, and there seem to be a lot of you. So today, a little news on why I haven’t been writing:
I am now the father of six children. My first was born with spina bifida, a birth defect that can have
many outcomes; Joseph, now twelve, is completely paralyzed from the waist down. Life in a wheelchair is just how things are for us, a hassle, but something we can deal with.
But the last year things have gotten more difficult. Last summer he needed to have his whole spine fused, neck to pelvis, to correct scoliosis. The surgery has had endless complications. In the first round there was an infection, then a secondary infection, altogether requiring seventeen days in the hospital in three admissions, including the first day of my school year. Winter had lots of little things. And then this summer we had another major infection in his back, and another ten days in the hospital.
I pulled off one post during that hospital stay, but since he came back, two Fridays ago, things have been hectic.
Tuesday night to Wednesday morning, our sixth was born, Elsbeth-Marie Thérèse. (Elsbeth is a Swiss version of Elizabeth and a family name. The other names point both to the Visitation, the feast day when we were married, and the Carmelite saint Elizabeth of the Trinity, one of our favorites.) A great joy!
But Elsbeth has had some breathing problems. Things seem to be headed in the right direction now, but she’s in the NICU and that is making things a bit crazy. I have not gotten much work done this summer.
Meanwhile, the day after she was born, Joseph had a follow-up visit in which we learned that there is a high probability – though we don’t know how high – that infection remains, hiding in the “slime” on all that metal in his back. The body covers metal with a hiding place for bacteria. We face months of antibiotics (not part of our holistic lifestyle), at the end of which infection might still spring up in all kinds of ways. They say we need to beware, and call our specialists, if he has a pimple on his back, since that could be a path for infection. And any fever might be a new infection in his back. Not good news.
Joseph takes everything in stride, but it is a lot for both of us.
Today, for example, my wife is at the hospital with Elsbeth and I am home with the other five, ages 3-12. Today I needed to call the plastic surgeon to discuss some excessive discharges from his surgery site over the weekend; his orthopedics nurse to try to get a working prescription for a bandage he needs; the infectious diseases doctor to discuss his antibiotic, which she calls a “gorilla” for its aggressiveness, and which has a possible side effect, which we are experiencing, of joint damage – and then the other two doctors again, because the infectious disease specialist asked for back up. It’s a lot.
I am sorry to admit that the main person for whom I write this webpage, dear readers, is not you, but myself. It helps me keep see clearly. So I will continue. But right now, there hasn’t been time.
A last thought: you who read this webpage know that I believe love of the poor is essential to the Gospel. I convict myself all the time, and have been trying to find ways to live what I preach. I daydream of living like Henri Nouwen, for example, writing spiritual theology while working with the poor.
I am slowly realizing that fatherhood is my poverty. I don’t get to visit the sick because I am always visiting the sick. That, I suppose, is Jesus’s beautiful providence for me, and for it I give thanks.
Do keep us in your prayers.
We will of course keep your family in our prayers. We hope for continued healing and strength for your family. And my God’s grace and wisdom be with the medical professionals as well. We hope Joseph gets effective and careful treatment. And congratulations on the birth of Elsbeth. May God’s continuous blessings flow always to her as well.
We will offer our family’s nightly rosaries to your family this week at least. That’s the start of what we can do and I hope we can do more, too.
Peace be with you,
Stephanie, Brett, Sophia (9), Brianna (8), William (5), and Andrew (3).
Dear Mr. Johnston, God bless you! I’ll say a prayer for you and your family.
Abigail Jovanivich informed me of Joseph’s condition. I am a C5-6 quadriplegic that has bone infection in the pelvic area. I had to have my hips removed 5 years ago. After getting home from that hospital stay I went to a Naturopath. She put me on a few different natural items for building my immune system. I used to get a UTI every 3-4 months. I have not had one since working with my naturopathic Dr. Unfortunately, nothing is covered under insurance. If your Infectious disease doctor is willing to work with a naturopath then you have the best situation for warding off infections.
I have been including Joseph in my Rosary intentions as I know that prayer is better than anything. God Bless you and your family
Dear Mr Johnston, you and your family are in my prayers. I will also forward a prayer request to the carmelite sisters in Alhambra CA . I volunteer at their retreat center. Your blog posts are very thoughtful and penetrating. I look forward to reading them. God Bless. John