There is a reliable course I follow to settle back into home following a hospitalization.
First, I unpack. If I do not unpack immediately, it can take weeks. It is so unsatisfying to spend two weeks procrastinating unpacking, finally unpack, and then have to leave again. Better to get it out of the way. In this, I erase all traces that we were gone. I restock suitcase items as needed, put away the suitcase, the bags, and move on. I take the same approach with Peter’s things.
Second, I go on the rampage. I am a territorial woman and my home is no exception. It is best for my husband to be gone when this takes place. It usually looks and feels quite angry. I go about the house putting everything just as I like it, react strongly when things are out of place and look like a madwoman. I do not care how the house is kept when I am gone, but this process is cathartic for me. I come out satisfied, like winning a fight. The house it turned back. It is mine again. All traces of my husband as the housekeeper are gone.
Third, I buy flowers. I arrange flowers. This time, sweet peas are in bloom at my mother’s. I cut a large batch. My six-year-old surprised me with a sweet bouquet because she sees how I love them. We are lucky if I stop at three arrangements. I could do more.
Fourth, I take the kids on an adventure. Today we went to the Farmer’s Market. I could not resist an arrangement of roses and eucalyptus from Kelley Flower Farm.
I added Jupiter’s Beard and Dusty Miller to make it mine. We sampled everything that was not pure sugar. I bought a Jack London book at the book sale. We stopped at a Barn Sale on the way. It was gloriously reckless.
And now I am home. It is mine. I am reestablishing my authority with the kids, and my friendship. I look around and see not just the house I left, but the home I continue to create. My heart is full of gratitude and joy. In these perfectly imperfect moments, my heart has never felt so full.
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.
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.
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.
I have shared with you my tips on surviving an emergency department visit and a long hospitalization. If you have experienced these things, I am sorry. They are life changing and unquestionably difficult things to go through. If you made it through these experiences, but tragically, your little one did not, with all my heart, I am so sorry. What I write next references adjusting to life at home with your little one following a major hospitalization. It will not reference what it is like to adjust to life after a long hospitalization and loss.
My little 15-month old treasure has had 15 hospital admissions. Of those two were truly frightening, and a total of five were very dangerous. In the beginning, my mind only took in as much information as it could handle, which is why the middle three stays did not frighten me as they could have. But they probably will in the future.
When I drove him home after the second admission (a month and a half long stay) I wrote a poem that focused on the nightmare ending. This was my mindset for the longest time. It was a nightmare and I would wake up. I knew he had a genetic condition. I knew we would return to the hospital. I knew this intellectually.
Emotionally, I felt waves of relief each time we came back and the belief that it was over. We are home now. I felt the jolt soon after when we returned again and again.
This mindset caused me to lose my peace. It took 12 months of our hospital life (which started when he was two-months old) before I learned a new way of looking at it.
We are going up a mountain, hiking on a switchback trail. On one side is the meadow, the sweet relief, the promise of comfort and ease, the time with family, my beautiful home, the good health of my boy. On the other side it is dry and dusty and dead because this mountain is in California and is a volcano. So we walk, back and forth, up, up, up. Some times we face the meadow, some times we face the dry side. But it will change. Whichever side we are on, it will change. This thought brought me peace.
How do you look at the situation? Maybe yours was a one-time admission. Or maybe for you, like us, it is a way of life. Maybe this is your only child. Or maybe, like us, you have other children. Everyone’s story is a little different. I would love to hear what helps you.
All the advice I gave in the last piece on maintaining peace during your child’s hospitalization…apply it here as well. I needed to learn how I can apply the coping skills I learned in the hospital to life at home. With the demands of home, it will look different, but it serves me the same. I walk in the evening when my husband gets home or exercise when I first wake up. I stretch. I read before bed. I try to unplug. I try to eat healthy, feeding myself as healthy as I try to feed my children. I try to avoid the mindset that I deserve this sweet or I deserve this drink and focus on ways that will actually lower my stress. I ask my existential questions and seek out spiritual and emotional support. I talk to my husband. I craft.
The reward at home is greater because I am in my beautiful home that I have lovingly crafted. The joy is greater because I put my computer aside and watch the children march around the house with instruments, and see Peter crawl after them. My heart is fullest at those moments. I know, as he crawls, that he has a g-tube and Broviac under that shirt. I know we will do a dressing change in a couple days and use a syringe to infuse his TPN with vitamins tonight before connecting him to a 1.5 liter bag of mystery stuff that makes him grow and live. It does not matter.
These are the perfectly imperfect moments. Learning to live in and enjoy the moment, coping and caring for myself, staying aware of my interior life as well as my exterior life. These are things I have learned. And each month I may have to learn them all over again. But we keep moving higher. We keep moving forward.
Maintaining physical health and energy is vital for you to support your child in the way you desire. I recommend focusing on four areas: sunshine, exercise, wise eating and sleep. In serving the intellectual capacity by exploring the neighborhood, you are getting some sun. A full day inside is not good for anyone. Refresh yourself physically by taking a break outside.
Exercise. Talk walks or doing a short exercise routine first thing in the morning. It is important to get your heart rate pumping aside from stress. This will energize you for whatever is to come, and reset you after a hard day. Stretch before bed.
Eat well. You might hear, when someone offers you a sweet, “you’ve earned it.” You are still in it. Telling yourself you are justified to eat unhealthy things for comfort will not help you in the long run. They will zap your energy and give you more calories than you can work off in that little room. Should you treat yourself? Absolutely. But avoid the trap of thinking, “I’ve earned it.” The prize is not a sweet. You are not going through all this for a sweet, damn it. That kind of thinking is a way to cope with stress. Cope with the stress in a way that will actually work. Avoid heavy foods with lots of carbs. Protein, fruit, and vegetables will make you feel better after these long hospital days.
Sleep. If this is your first time with your child in the hospital, leaving the bedside at night might be unthinkable. Your child may be older and scared to be alone. My child was a baby when first admitted and an easy sleeper. You alone can make the decision whether or not to sleep at the hospital. If you choose to sleep away from the hospital, it does not mean you a bad parent or less sacrificing. The hospital is a terrible place to sleep with beeps and interruptions all night long. If you are well rested, you’ll be stronger physically and emotionally to remain present to what happens during the day. Think about it. Sleep on it.
You are here because of your relationship to your child. Try to maintain other relationships you have as well. If you are social, cultivate new friendships by chatting with the nurses, getting to know them and what their life is like. Keep in contact with people who make you feel comfortable, not with people who stress you out. Group updates over email work well for those who want to know the details of how your child is doing. If someone responds with a question, reply to the whole group with an answer because others may wonder the same thing. Have hallway conversations with your spouse or best friend. If you are a repeat visitor learn who is around at the hospital. Find who you like and get along with. I found various individuals with whom I connected and when the additional crisis of a prenatal fatal diagnosis came, I already had a support team. This was also possible because my son has an enormous medical team. Even with a smaller team, you likely see the same nurses, cleaning staff, and food delivery staff over time. Learn their names. It helps.
As human beings we also have spiritual needs. We need to feel a sense of purpose and meaning in what we do. The sense of suffering and existential questions may be great. If you feel comfortable, ask to speak with a chaplain. There may be chaplains of different faiths assisting at the hospital. It is all right to ask if one of your particular faith visits.
Please take time to figure out what you are experiencing on the spiritual level. Allow your heart its pain. With each up and down, we can learn to obtain a sense of peace and acceptance of what happens, learning to make the best of it. The alternative is no good. It is better to be at peace. By spending some quiet time considering what you’re experiencing, you can come out of this stronger and better able to handle whatever life throws at you in the future.
The hospitalization of your child is a traumatic experience. I always thought PTSD was only like something a person experiences in war or being assaulted. But really, a trauma is a thing that completely shakes up your understanding of the world you live in, and forces you to reevaluate. We come out different people. Next time, I will share with you my thoughts on how to adapt to life on the other side of a major hospitalization.