Marriages Under Threat--Parenting the Chronically Ill Child Part 1
The following is an a synopsis of a talk the Professor and I recently presented at Fuller Theological Seminary on how to live as a happily married couple when the odds are stacked against us as care-givers to a chronically ill child.
"Why do 75% of marriages fail, when one or more of the children have a chronic health condition?"
The pressures of caring for a child with a life-long illness are unique. The lives of every member of the family are irrevocably altered, the relationship between family members shifts, becoming unrecognizable from what they were pre-illness. Either you get on board with the new reality or you sink and become one of the statistics. Understanding these figures and the reasons why your marriage is under a new pressure and what can be done about it may determine whether or not a couple make it.
What are the unique pressures on marriage when caring for a chronically ill child?
1. Personal sorrow and grief. Having a child born into your family is uniquely beautiful. Having that same child become ill is uniquely tragic. And so what follows is a mourning period as you watch the child suffer physically, emotionally and struggle with health, school and personal relationships. Accepting that family life as it once was will never be the same. There is no turning back the clock and all the wishing in the world won’t change the new reality. Many of the things that defined the family unit are gone as new patterns and routines emerge. This means as an individual within the marriage your embark on the 7 stages of grieving: shock and denial, pain and guilt, anger, bargaining, depression, testing, and finally acceptance.
2. Grief and anger of siblings, the sick child, and partner—at the same time as dealing with your own loss, you are also concerned with supporting your loved ones who are going through the same process. This is not easy when you are trying to navigate how to give time and attention to all the family when one child demands 90% of your effort and emotional reservoir. It's not easy full stop.
3. Unparalleled Exhaustion. We take it in turns each night to administer Mathilda's doses of Xyrem and keep her safe when she wanders into the kitchen looking for food at 4 am. This means we live on a a broken nights sleep and have done for the past 6 years. Being tired like this means we are not fully functional in almost every area of our lives.
4. Financial pressure as parents invariably have mounting medical bills, like a recent $10,000 sleep study and drugs which cost $90,000 a year. Sometimes our health insurance steps in, sometimes it doesn't. The financial pressure is unrelenting.
5. Loss of time as you physically care for the child day and night, attend doctors visits hundreds of miles away, pick up medications, appeal to insurance companies, pharmacists, teachers, and explain what is required to parents of friends who have asked for something as simple as a play date.
6. Big life decisions need to be faced. In our case that involved moving house and continent, and subsequently choosing the right doctors, medications, school, community, and relationships. This means smaller decisions take a significant back seat.
7. Complications and fall out with the child not achieving their academic, social, and emotional potential. Adjusting plans for all the children’s needs. In our case this meant giving up our philosophy of home-educating and putting the children in school as well as navigating a new culture and context.
8. Fear over their future. Will the chronically ill child be able to live independently? Will we still be a care-giver in our retirement years? What impact will their condition have on them as adults? Will she be able to hold down a job, a marriage, have children?
9. Transformative Experience. Essentially you are changed by the suffering of your child. The marriage is also therefore changed (whether you like it or not) and takes on a different shape—one you didn’t see coming or did not sign up for, and one that we have to recognize and roll with lest we end up as one of the couples who couldn't keep it all together.
The rest of the talk which looks at how we have offset the demands of being care-givers will be presented in Part 2, closely followed up by part 3.
With Grateful thanks to the Professor, my partner, annoying brother, and soul mate.