Having a daughter with cerebral palsy and a son with special needs has earned us frequent flyers status at hospitals. As some point, I quit counting the number of hospitalizations, and I quit worrying about what was easier on others during these stints and instead did what was best for my kids, myself, and my husband.
Here are a few tips on how we survived:
1. As much as possible, KEEP NORMALCY! Get dressed—the patient included–in your own comfortable clothes. This might drive the nurses crazy trying to work through all of the cords and lines, but getting dressed helps keep a routine and most importantly, a better sense of self while enduring little to no privacy. If you don’t allow electronics during the day, don’t make an exception at the hospital unless warranted. There are a ton of activities they can do instead of screen time—board games, color, read, journal, homework, etc. Hospitalizations are not a treat so we save things like video games as rewards for especially difficult undertakings like shots, scopes, IV’s, undesirable medication tastes and textures distributed in various bodily points of entry.
2. TAKE PROVISIONS! Pack protein snacks, bottled water, and a roll of quarters. It is difficult for us to leave our child’s bedside so even a quick run to the cafeteria that feels like it is miles away is a daunting task. Most hospitals now offer a “room service” feature, but we rely heavily on a family room to help with accommodations like food. At 3 a.m., there is little to snack on without a lengthy run to the cafeteria a mile away. I also always have handy a reading book and book light to help pass the time.
3. REST! With constant monitoring, alarms, medications, etc. it is difficult to rest. We nap often, and try to schedule bath and bed times for our normal home routine. You are your child’s advocate and voice so being rational is going to be required and without sleep, I have no tricks on how that can occur legally.
4. Get a CARING NOTEBOOK and keep it current. This is a must for moms especially during hospitalizations! You can create your own or get one for FREE here. Our notebook allowed me to focus on our babies and less on tedious and redundant but absolutely necessary questions. It never failed that during admission I would forget the dosage amount but our notebook allowed me to accurately answer questions with confidence quickly. I highly recommend an actual binder notebook even though an app on our iPhone is also utilized. This allows hospital staff to access information without interrupting me. Further, we discuss care and issues privately, not in front of our children. Kids sense people’s discomfort and internalize that in ways that aren’t always healthy. The notebook allows us to jot down any questions or concerns for our doctor. My favorite questions is always, “What do we need to be able to do before we can be discharged?”
5. ACCEPT HELP! Trust me, loved ones genuinely want to help but being vulnerable enough to ask and accept it can be tough only if you let it! A loved one organized crock pot dinners for us (and nurses) during lengthy stays. Another picked up our dirty laundry and returned it clean and folded. Neighbors took care of our pets. Aunts and uncles helped care for our other children, gathered our mail, mowed our lawn and took our trash out—we simply had to ask and receive! Co-workers relocated meetings that could not be put off to the hospital and thank goodness for Google Docs, Skype, FaceTime, and Zoom! Facebook friends and groups also chipped in and sent messages, visitors, and support—so much so that we needed to put boundaries around it.
Accepting help was the best thing I did for myself and my family—and the person on the giving end.
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