and can be expensive. Since the staff must monitor the calorie intake for patients, nibbling on your child’s leftovers is not an option. Bringing your own snacks is the best bet. And since beverage machines aren’t always conveniently located, I started bringing a lunchbox-sized soft-sided cooler: I would buy several drinks at a time and keep the extras in the room. Having your own food and drinks is also handy when you’re hungry or thirsty in the middle of the night. Check with the hospital before bringing anything with nuts, due to allergies. Also, having gum or mints is a good idea, especially when the doctor wants to talk to you at 3:00 a.m.!
Take a Pen and Notepad. Write everything down—you will thank me later. Whenever they put something in the IV, ask what it is and when it will be needed next. Write it down and note the time, plus the time it will be needed again. With painkillers, it’s very important not to lapse for the first couple days; it’s hard to get back to a good spot if they run out. The nurses are overworked and will sometimes run late. If they say 4–6 hours, buzz them and remind them at hour five, which allows plenty of time to requisition the pharmacy and work your child into their regular rounds. Writing information down is also a good way to catch errors; the staff is only human and has many patients. You only have one patient to track. I have caught errors this way, and most of the other parents I have spoken with concur. Additionally, if you write everything down, you won’t have to ask the same questions over and over. You will receive a lot of information, and eventually it all starts to blend together. If you write it down, you can revisit it. Also, jot down your questions for the doctor when you think of them. Believe me, you’ll have a long list of questions in middle of the night and won’t remember a single one when the doctor arrives for his morning rounds!
Bring Headphones and Other Gadgets. Headphones can be a lifesaver for both you and your child. If your child has a roommate who cries or screams (as many younger patients do), it can be very unnerving. We passed the time watching movies on my laptop and using our iPods. We also watched an entire television series on DVD (a series can really make the time fly by). The hospital television does no good if your child’s roommate is having visitors or watching something else. If your child is old enough, you may consider allowing them to have a Facebook account so they can keep in touch with friends. For Grant, this was a social lifeline! He could chat with friends in real time, and I was there to supervise. Also, keep in mind that if you have a young child in the room, the nurses will turn off the room lights early, so bring a book light if you plan to read.
Bring a Pillowcase and Blanket. Hospital linens are typically scratchy. And besides, a colorful pillowcase from home is much more cheery. It’s amazing how such a small comfort can make such a big difference. You will also need your own pillow, and both you and your child will want a twin-size blanket or throw. I prefer fleece because it’s warm and washes up easily. Sure, the hospital has blankets but, again, they are usually thin and scratchy, and sometimes the only thing they provide parents is a sheet. After a few days, this little added comfort will make your stay ten times better. Of course, don’t bring anything too expensive or that your child loves, because there’s a good chance it will get stained.
Rest. I realize it’s easier said than done, but rest whenever you can—and don’t feel guilty or indulgent. Schedules are crazy in the hospital, so if you can catch a catnap at the same time as your child, you should. Vital checks, routine monitoring, and medication administration make it hard to snooze more than an hour or two at any time, night or day, and sleep will help give you the mental clarity you need to communicate with the doctors. This small attempt at taking care of yourself is actually an important part of ensuring your child will get the best possible care.
Plan Ahead. Depending on the admission (anticipated for a procedure or an emergency that results in inpatient stay), you may have a few days or just an hour or two to prepare. After our first admission, I had a bag packed and ready to go for each of us, just in case, and kept the “right” snacks stocked in our home so I wasn’t making an extra trip to the store.
Don’t Be Afraid to Ask. Once you’re at the hospital, ask the nurse if she will order the thick pads that resemble egg crates for your chair and your child’s bed. They are usually available, but you have to ask. After getting settled, ask your assigned nurse what other services are available. For instance, do they allow you to check out video game consoles? Do they have DVDs on loan? At children’s hospitals, they usually have a child life activity center, as well as child life specialists who can bring age-appropriate diversions to your child when he or she is feeling well enough.
Don’t Bring Too Many Activities. It may seem counterintuitive, but if you supply every imaginable activity to keep your child occupied, there won’t be anything left for visitors to bring. When friends and relatives ask what to bring, you can recommend activities that your child enjoys, such as crossword puzzles, Sudoku, crafts, or books. This way, your child will feel loved and surprised, and the activities will be spread throughout their stay.
The New Normal
The upheaval we experienced from Grant’s illness spread to all areas of our lives and affected the entire family. Evan no longer had the “homeroom mom” he did before. Caring for Grant and making doctors’ appointments had priority over bake sales and field trips. I saw Evan very little during this period, even though I was still a stay-at-home mom. Thankfully, Grandma helped with homework and picked him up from school while his dad was still at work. Time with my husband also diminished—we rarely even slept in the same room, since he needed to rest for work, and I was up to give Grant his medications every couple of hours. The schedule was almost like having a newborn again.
Because Grant’s immune system was so suppressed due to the medications, we no longer had friends over to the house. We had been warned about exposing him to others who could possibly be ill or carriers of illness. We thought twice about going out for anything but the necessities for the same reason. It felt as though we had become prisoners in our own home.
Nothing was routine anymore, and we all had to adjust. Most parenting websites and books will tell you that children need routines. Even when dealing with a chronic illness (some would say even more so), it’s important to stick to as many daily routines and habits as possible in order to help the child cope with his or her new reality. While I agree with this advice, I learned it doesn’t always work. When there is a flare or a big bump in the road, such as a hospital stay, everything goes out the window! There is no routine. You deal with things as they come.
With many other illnesses, there are defined beginnings and endings, courses of actions and expected outcomes. The autoimmune family of conditions is far less predictable. Just when you think you have a good rhythm going with medication or have established the right balance between rest and activities, something changes, and your child may respond differently each time. It will take time to figure out what works best for your child and your family. Then whatever you found to be “best” will evolve. Being adamant about sticking to one plan or routine that did work will just drive yourself (and others around you) insane! It can be very disconcerting, but there are things you can do to ease the transitions.
MOVING THROUGH THE STAGES OF GRIEF
In many ways, being diagnosed with a chronic illness or having someone you love being diagnosed with one is a death of sorts. Even though the prognosis may be good, it’s the end of the “old” life as you knew it and the beginning of a new, sometimes dramatically different life. In her 1969 work Death and Dying, renowned sociologist Elisabeth Kübler-Ross defined five stages of grief. Although the original intent was related to the feelings faced at the end of life, I believe most parents will see themselves in the model she outlined. The following are my interpretations of the Kübler-Ross stages of grief as they apply to your child being diagnosed with a chronic illness.
Denial—In
