When Your Family's Normal Includes Hospitals: Navigating Medical Complexity Together

You probably know by now—something that most people don't—that medical complexity doesn't just affect your child; it affects the entire family, since your family's calendar is filled more with appointments, therapies, and hospital visits than with soccer practices and playdates.

The diagnosis changes everything—your marriage, your other children, your daily routines, and your idea of who you thought you'd become as a parent. Yet a great deal of the support that is provided to families navigating health challenges and disabilities are focused primarily on the child's medical requirements, leaving the family to work out the rest by themselves for the most of the time.

I remember this season within my life, almost like it was yesterday. Yes, I was navigating life as a mother of children and one who was born with medical challenges. I remember saying to myself that "no one understands what I am carrying" however, through my faith in God and desire to be the best mother for my children and a healthy woman, I navigating this season with grade and loved myself, my children and family. God was with me, and I am grateful that now I have the opportunity to share my journey with others, and use not only my lived experiences but also my education training to support you. Today I understand even more so that many families feel as if no one has prepared them for the way this would change their relationship family dynamics—not only in the case of our child.

The weight families can say, quietly

Here is the reality, being a parent, mom or dad and navigating life while nurturing and providing for a child who has medical complexities usually involves taking on a number of different roles at the same time. Some of these roles include that of medical coordinator, advocate, a source of emotional support for the siblings, and a partner to your spouse, who is bearing the burden in a way that is different from yours. One thing that is often not discussed is that during this season, It is typical for couples to end up in what is known as "logistics mode", during which conversations tend to revolve around scheduling and keeping up with the symptoms, with very little opportunity for genuine connection.

However, I want to say to you that the fact that this is happening doesn't mean there's any problem with your marriage or your family; it is a normal reaction to ongoing chronic stress—and due to this, it is important for your family to have genuine support, not just your reliance alone on willpower.

Your other children are watching, too

Another missing element that is often not paid attention to is the siblings of children who have medical complexities. Many times the brothers or sisters often adjust in a quiet way—sometimes adjusting too quietly, and if not careful can become "invisible in the home." They might take on some of the caring responsibilities themselves, downplay their own needs, or be uncertain about how to talk about what is going on at home. Support for family and siblings can also help to acknowledge their experience, not just that of the child with the diagnosis.

A gentle reframe

There is truly so much that I can say about this matter, however, let me start by encouraging you that It's not necessary for you to have all the answers. Families dealing with medical complexity aren't defective—they are adapting to a real and difficult situation, usually without having a plan. Assistance doesn't mean fixing your family; it means helping you get back on your feet as a family.

Practical takeaway:

• Notice where "logistics mode" has replaced connection with your partner—even five minutes of checking in on how you're doing, not just what's next on the calendar, matters

• Ask your other children directly how they're feeling about what's happening at home—don't assume silence means they're okay

• Give yourself permission to grieve the version of family life you expected, while still building the one you have

If this is something that speaks to you, then my caregivers consulting service provides support to families who are dealing with medical complexity—including support for parents, couples, siblings, and the child themselves. In addition, I welcome you to my family community support members group. You shouldn't have to face this on your own. God is always present and I welcome the opportunity to support you.

My upcoming book, From the Kitchen to Well-Being, and my next book, The Family Behind the Diagnosis, explore these themes in more depth—more to come soon.

Dr. Adwoa