Dear Judy,
We don’t know what to do. Our two-year-old boy has Juvenile Myelomonocytic Leukemia, which can be fatal as you probably know already. My husband and I spend practically every hour thinking about him. He’s had a bone marrow transplant, but we fear a relapse.
We have no life. I take care of both my sick son, when he isn’t receiving treatment, and our daughter who is 4, and isn’t doing well emotionally. My husband and I barely speak to each other, we are so worn out and frequently angry. There have been fights which I won’t go into now, and also some drinking.
We need help. My husband keeps saying I’m at fault because I don’t have time for him when he returns home from traveling or work (he travels a lot). My problem is I just don’t have the energy. I can’t go to the movies, I can’t eat out. I’m terrified and very lonely.
Carol
Dear Carol,
I am so sorry about your son’s illness. JMML, as the disease is also called, is very difficult — although there is a 50 percent survival rate for children who have undergone bone marrow transplantation.
There’s nothing worse for a marriage than the critical illness or death of a child. So I think what both you and your husband (and your daughter too — but separately) need now is a lot of therapy.
Joint counseling for you and your husband together is an option, but since you mention he travels a lot, perhaps not a practical likelihood any time soon. So go alone right now. Call friends, perhaps people who has undergone a medical crisis of their own, and see who they recommend. Then check out the person yourself.
But make sure you see and talk on a regular basis to someone compassionate and intelligent. And make sure your daughter does as well. She too is facing more than she can bear alone.
An excellent book on the subject is “Every Day Counts: Lessons in Love, Faith and Resilience from Children Facing Illness.”
Let me know how you’re doing. And thank you for writing
Judy
My sympathies to Carol. I happen to be a couples counselor so I may have something to offer. I think she and her husband should regularly set aside private time for themselves. This won’t be easy but it’s necessary: It should preferably be out of the house. Maybe they can find a baby sitter, and go on “a date,” — the object, to remember the good things which brought them together. Setting aside this time to be together, they may find strength in each other. At least, it will lessen their growing alienation.
I think Carol is taking on far too much. My guess is she sounds like she doesn’t have anyone on tap for any kind of help. She should choose one person in whom she can confide, and discuss what she told Judy. If her friends take turns — doing ordinary chores like maybe grocery shopping — that could relieve some of the burden.
I wonder if the husband always traveled a lot, or if this is his way of escaping the pressure. Some guys are just that way. Been there, seen that…