The week William was diagnosed with leukemia I received three journals. I was strongly urged to record all the emotions and lessons for reflection. These blog entries bear many pieces of my heart and mind, but most is sealed up because I am not sure what to do with all of it yet.
To start off this reflection, here are a few laughs and real pieces of advice I learned from the heroes who deal with childhood illness daily: the nurses and doctors.
THINGS DOCTORS AND NURSES WANT YOU TO KNOW:
1. When living in a hospital, wear appropriate clothing. I second this with ALL I have in me. I’ve seen more sagging cleavage, rear ends, cellulite and towel turbans than any Mississippi Wal-Mart can boast. It’s a tricky situation; to patients and parents, our whole home is a tiny room that is entered at all hours. HOWEVER, our quick walk down the hall for water or to buzz a nurse is still in a working environment. I too have stumbled to the door at 2:00am to beg for help with a demon-possessed pump, but as one nurse said, “Make sure the cow is not coming out of the barn door, gentlemen.”
2. Please don’t have sex in the hospital room 6 feet from your ill child. Yes, really. When I was a resident advisor, the most common complaint I had after morning/night respect issues were about roommates having sex in the room while the other seemed to be sleeping. This carries over into hospital rooms. MANY nurses have walked in while having to give meds or take blood. Yes, it’s complicated to live in a place without privacy, but there are other options. Life lesson: Assume the person is NOT asleep. If there is the slightest chance someone can enter and there isn’t a lock on the door, or say a terminally ill child is in the room… don’t.
3.. Hospital floors are GROSS; bare feet are NOT okay! This one gave me the personal heebie-jeebies. Along with the Bathrobe Brigade are those who are comfortable walking around barefoot or in only socks in the hospital. This goes beyond personal preference; the floor has every nasty germ in each room- C Diff, RSV, chemo-vomit, allergy boogers, exploding diaper shrapnel… and it all gets tracked room to room on shoes. This is why I washed every ball that William threw to the ground EVERY time it landed on the floor; it went directly into his mouth. Three serious infections he caught were given by another hospital resident. Wear shoes– without fungus on your shower shoes. Until you get 20 in “the Show”, it means you’re a slob. (Name that movie!)
4. Nurses and doctors are real people too. They have great days and bad days; their kids teethe and have teenage angst. They connect with patients and are crushed when one dies, but must maintain a professional front for the cheerful people in the next room. The benefit of this is that they bring their unique talents and personalities into the care. One poor male was not great with babies or nursing mothers, God Bless him, but he could get any teenage boy to open up. Julia mastered animal noises and helped Will’s speech burst forward; Jocelyn brought out his excitement, Kathy taught him to love Scooby-Doo and Lisa knew to start antibiotics 24 hours before symptoms because she knew his body so well. Caroline made him smile, Erin got the biggest wet kisses, Jen gave great snuggles,Kelley got his biggest smiles, Danielle could actually put him to sleep and Tonia mastered 4am blood draws during chemo week and the list goes on and on. These people became my battle buddies, my friends and my family. The talk of nasty, lazy healthcare workers or doctors who are out for money and in pharmacy pockets make me ENRAGED. It’s a red-head fury kind of upset.
5.Parents NEED to leave the hospital rooms. We all struggle to leave our sick children, but more than any other time, parents need to sleep, eat, and refresh. We live in a small room with toddlers, surly teens, and hysterical newborns 24/7, often feeling guilty for taking a 15 minute walk to do laundry. It is very much like the newborn stage all over again and the patients lash out. One doctor wisely insisted a mother of a teen leave for 24 hours. “Remember when you had a teenage crisis? You wanted to be alone in your room to sort it out or talk to friends. Imagine having your mom there at all times.” I was SO grateful for the family members and friends who took shifts to let me regroup.
6. Ask for help. A growing trend with cancer and illness survivors is the need for help after treatment. The support, meals and babysitting was essential; we couldn’t do it without help. However, many adults suffer to integrate after treatment. I am like a new mom escaping the house for the first time; I have no idea how to have a real conversation anymore. I have little common ground with non-illness-club folks and it is hard to ease in. Asking what treatment was like is, in a small scale, much like asking a veteran for a war story. It was awful and we are thankful to have survived. We saw the best of the human condition and we cherish life. We bonded with battle buddies and can speak volumes with sighs and facial expressions. We know how to sob and make cancer jokes in the same breath.
Many kids struggle with facing death, survivor’s guilt, being labeled as the ‘cancer kid’, and with reintegrating. Some use childhood cancer as an excuse for decades; others thrive in spite of it. Sadly, many adults who survive cancer are suicidal, severely depressed and isolated. Now that more people are surviving, this issue is receiving additional attention.
As for us, it all seems a bit surreal. 15 days ago we were in a hospital getting surgeries. Now we live in a different state and have only a few remaining boxes to unpack. We have new struggles and new joys– but it will take time to heal.
I feel badly that I haven’t blogged or been in tough during these chaotic weeks, but also very thankful for a media-hiatus. Instead of snapping pictures I am chasing boys, watching them play and memorizing the smell of boy- dirt, sunscreen and sweat. There will be more to come, but for now, hospital advice is excellent for life: Wear appropriate clothing. Wear appropriate footwear, especially around gross floors. Remember that all people are PEOPLE. not just a service provider. Give yourself some space and let your kids grow without your shadow. Help one another.
It turns out the most important lessons are sometimes pretty simple.