I often think about how, in some ways, emotionally managing Peter’s condition is easier because I can compare him to my other children. Having other healthy children has protected me from the self-blame, and shown me Peter is learning and growing like a normal, non-medically complicated child. That said, there are many challenges that come with balancing the needs of three children against the need of the one. I’d like to share the lessons learned along the way regarding managing hospitalizations with little ones at home. All the recommendations here may not apply to you, but I hope there will be some gold to glean for you from our experience.
Get to know your support systems at home. It takes vulnerability to ask for help. As something necessary and good, it is another sacrifice you make for the sake of your family. Accept help when offered. When you have a calm moment, consider making a list of things people could help you with so you can more easily remember things when people make general offers.
Get you know support systems in the hospital: social work, child life specialists, music therapist, and so on. There may be more than meets the eye. It can take a while to learn what is available and see how it may benefit you or your child.
Re-work the spousal dynamic. If you are married or have other people deeply involved in raising your children, take an objective look at what each person contributes to the normal balance. I am the planner. When I am gone, and my mind is occupied with hospital business, I cannot plan for my spouse or children. He and others will have to coordinate plans. It cannot be as I might like it to be. I must learn to let go of this. Every hospitalization, no matter if it is less worrisome than others, is a sort of crisis because the family is separated. In times of crisis, things cannot be just as we would have them. I should not blame my husband if things are not functioning at the same caliber. An entire person is missing from the home dynamic! Learning to accept that is part of finding peace in difficult times.
Engaging in medical play
There are a handful of things I focus on in keeping the heart of family life pumping even when in my absence.
- Maintaining family celebrations
After our Easter fiasco, I was determined to have a back-up San Francisco plan for every holiday. My plans for home would be simple enough to translate should Peter end up in the hospital. As I look back on the past year, I feel this was a gift to our children. Each child’s birthday was celebrated. In fact, we were able to make such a celebration that when it came time for Peter’s first birthday, I could do nothing. He is too young to understand and so I let it go. I reached my limit. I tell myself, “life does not stop when we get to the hospital.” Christmas still comes. Easter comes. Birthdays are a big deal.
- Routine Family Visits
During Peter’s first admission I put off asking my parents directly to bring the children. Back then, the two-hour drive seemed like a big deal. I should not have done that. When we learned after a week that we would not go home yet, I fell apart in tears, desperate to see my children. We had never been long apart. After that, we agreed to always have a plan of when we would see each other again and to remind the children that plan. “We do not know if Peter will still be in the hospital, but if he is, we will see each other on Saturday.” We never told them when we hoped he would be discharged until it was certain. This approach gave us things to look forward to and hope for, without getting hopes up.
During our visits, we established a routine. We limit the time in the hospital room to keep the kids sane. We go to mass together. They go to the playroom. They know what to expect and are excited to come.
Ice Cream following a Giants game
My oldest daughter is six. The key for us to was to communicate at an age-appropriate level what was happening. It would do no good to hide it from this perceptive, sensitive little girl. She would know if something was happening, better to tell her and give comfort her. “Fever,” “infection,” “sick,” and “medicine” are common words in our house. “Peter has a fever…the doctors are working hard to find out why he has a fever…they’ll work hard to keep him comfortable and give him medicine…then he’ll stay a little longer until he strong enough to go home.” Something along those lines. For my four-year-old, I might say, “Peter has a fever and we are going to the hospital…but we’ll see you on Saturday.” I keep it focused to what information the child is most likely seeking. When I’m not sure about a behavior from the children, or questions they ask, I contact the Child Life Specialist for advice.
We also talk about feelings. I tell my six-year-old that I am sad to be away from her, I miss her and will be so happy to see her again. I say it is hard when we have to go. I am worried about Peter. I share these things with her and when she shares her feelings with me, I listen or might say, “sometimes I feel that way too.” I have not pushed her away if I cried, but also did not seek her out even though I am comforted by her hugs.
She is part of the equation, even though I should like to shield from all the pain. Though she feels what is happening, we never put on her the responsibility of keeping the family together. She could engage or disengage, cry or play, however, she responded, was welcome.
In order to do this for the children, I have to do my best to take care of myself. It is very difficult in times of crisis to step outside myself and talk to the kids, but I try.
Parenting is a thousand little moments. What happens today will not define my child’s future or who he or she is bound to be in the future. So I can fall short a little today. It is the thousand little moments added together, not the individual moments, that count most. And for whatever influence the lesser moments have, there are greater moments that are equally, if not more, powerful than those.
For other pieces in this series, click below: