Excess Baggage

If a mom can stop fixating over the guilt of having a critically ill child, it is time to obsess over the damage she has done to her other children.


For Henry, I have neglected his siblings. No bones about it. I have left Gwyn and Ian behind to seek treatment for Henry in other states. We’ve celebrated Gwyn’s birthday at the hospital hotel. Twice. My older two are constantly asked about their brother, told that they must help out, be patient, stay with grandparents and friends.

One mistake I made was to tell adults bad news about Henry’s health before I broke it to my kids, probably because I was cowardly. When Gwyn was in the fourth grade, it began to dawn on us Henry needed a transplant. My daughter found this out not from her parents but at school. I had told a teacher’s aide in Henry’s class about this possibility and the news spread to the point that one of Gwyn’s classmates asked her about it. She came home both angry and scared. I hadn’t trusted that she could handle the information and now she didn’t trust me to be up front with her.

At some point, I wrote:

I think it is fair to say that my kids would benefit from some counseling. God knows I need it but when do I manage that between Henry’s needs, raising a family and working? I choose to ignore my emotional crevice because I believe I can handle it. I’ll be fine as long as my child gets to live.

Gwyn and Ian have coped with Henry’s constant medical needs in ways I do not yet know. I always disliked that mindset that children as “so resilient” and can handle things better than we adults imagine. The truth of the matter is that Ian and Gwyn survived, as best they could. But it would be insensitive of me to say that watching their brother’s struggles and their parents’ constant worry did not mark their identities.

My two older children are night and day. Gwyn is very academic and an advocate for all things she finds unjust in this world. She’ll nag me to send money to African school girls, chastise me for using plastic grocery bags. Gwyn appears very self-possessed but is quite fragile on the inside. I often wonder what she will be like when she starts dating – part heartbreaker, often heartbroken. Ian is the most affectionate of children but also running amuck with imagination and questions. I have never seen him cry about Henry and he very rarely asks questions about him. Instead he wants to know why he can’t taste his tongue and why God didn’t make any Oklahoma volcanoes.

In a journal, I confessed:

There are questions I imagine my older children have that frighten me: “ If I were sick, would I get more attention?” “ Do they love Henry more than me?” “ Why won’t God save my brother?” “ Why can’t Mom spend more time with me?” “How long do I have to stay in the waiting room, live in this hotel, be shuffled between relatives and friends?”

The worst question was not imagined but spoken aloud by my daughter one day. She asked, “Mom, why didn’t God give me part of Henry’s broken heart so that I could take away part of his sickness?”

The only advice I can impart here is to appoint advocates for your other children – godparents, aunts, grandpapas. They are the ones there to witness your other children’s lives while you are focusing on the one struggling to survive. These adoptive caretakers are there for more than just doing kids’ laundry and cheering at the t-ball game. They serve as confidantes and safe harbor. In our situation, I asked that the children’s two aunts to be the ones Gwyn could call and say whatever she wanted to, knowing her feelings were safe with them. Ian was offered this option too, but the only person he wanted to call was Spider-Man.

I also asked St. Paul’s clergy to keep an eye on my kids. I even asked our clergy if they thought Gwyn and Ian would benefit from some counseling, especially to explore how their understanding of God was impacted by having Henry for a brother. Mother Susan looked at me in a loving way that said, “you don’t have any idea how badly you need counseling.” I have to be honest here. I really regret that I did not get family counseling during the seasons when Henry was home and doing moderately well. If I were to write a family case study for a counseling evaluation, it would say:

Ned and Erin have been married for more than a decade. They have three children, Gwyn, Ian and Henry. Henry was born with serious heart defects requiring multiple surgeries and extended hospital stays. His long-term outcome is not known. The other two children are in good health, are good students and participate in their church and extracurricular activities. Erin is considering a divorce but feels like her family cannot sustain further stress . In the last few years, Erin’s only sibling died at a young age, as well as both of Ned’s parents. Ned has endured two job lay-offs and not worked for a few years. Erin is working as a graduate assistant and completing her dissertation. While they have a supportive family network, all relatives (save for Erin’s grandmother) live out of state or overseas. Ned and Erin have discussed marital therapy but not sought counseling. They argue about money, sharing household responsibilities and recognizing the efforts each spouse has made. They feel that their strongest bond is supporting one another during family deaths and Henry’s hospitalizations. The family has endured considerable trauma and sorrow.

This family needed counseling. We all needed to grieve privately and together and we needed the tools to know how to process what was happening to us. Some of the best advice I ever received in this matter came from Chaplain Hal at St. Louis Children’s Hospital. “You have to mourn for the loss of your child’s good health.” I had never thought of that. I thought I would mourn if Henry died but until that point, I didn’t have time or the energy to feel bad about what was happening to me. Grieving, being angry, feeling desolate was self-indulgent. My job was to be strong for Henry, try to make it up to Gwyn and Ian when I was around, and put forth the most optimistic face I could to family and friends. Notice how being strong for Ned was not a priority. In my mind, we were in the same trench – he’d just have to deal with the ugly, irrational, bossy, weepy, manic and annoying sides of me.

You have the right to mourn. You have the right to be pissed. It is natural, and I have seen it amongst all of the PICU moms I know. You will feel guilty about your other kids. It’s common to have feelings of failure. As moms, we feel like our first job is to protect our family.

So protect them by acknowledging you cannot do this by yourself. If it requires a dozen doctors and nurses to care for your child’s physical crisis, then it also requires dozens of friends and relatives to tend to your family’s emotional crisis. Ask people for help because believe me, they keenly feel a desire to do so. For all the months, Ned and I were in the hospital with Henry, it never once occurred to us to ask our clergy to provide some counseling (numerous times they came for visits, prayer and communion). Of course, then I didn’t want to do a marital autopsy but I desperately needed a venue where it was okay for me to talk about what I was going through.

It can be hard to ask for the help you need. “What can I do for you, anything at all?” countless friends would ask and for the life of me, I couldn’t come up with a response then. I think I have them now.

Can you bring me some nail polish remover?

Will you bring coffee and go for a walk with me on Thursday mornings?

Can we talk about anything but what is going on in this hospital room?

Will you add us to your church’s prayer list?

Would take Ian to the zoo sometime?

Will you run by our house and bring Ned’s pillow?

Can we just sit here and not say anything?

My family will always be remembered as the one “who has the kid with the heart transplant.” It meant that a good deal of our lives were up for public viewing because hundreds of people knew what was happening to Henry. This family is colored by sorrow as we are by joy for what we have survived. We could have done a better job of taking care of one another.