Caring for a medically fragile child is one of the hardest things parents will ever face. Although keeping up with medicine schedules, feeding schedules, and all the required doctor and therapy appointments can be tough, the most difficult thing, in my opinion, is being afraid to sleep. Sleeping might mean that you miss the seizure that could stop your child from breathing. It could mean that the reflux you deal with pretty well during the day causes your child to choke on their own vomit. It could mean that your non-verbal child isn’t able to let you know that their fever is spiking to dangerous levels or that their pain has reached an unmanageable level. Sleep could mean the difference between life and death for your medically fragile child. So what do parents do?
Parents cope the best way they can. For a married couple, it might mean one sleeps while the other remains vigilant. For the single parent, it might mean sleeping in the same room with the child and hoping that exhaustion doesn’t cause you to sleep so soundly that you still might miss an important signal. It might mean keeping a video and audio monitor on your child 24 hours a day while you sleep in short bursts – naps really, not genuine restful sleep. One family I know had a special device installed on their child’s bed to alert them to seizure movement. An alarm would sound in the event of movement that was not simply rolling over in bed. Another family had a window put in the wall between their bedroom and their child’s bedroom. All these devices and techniques may help some, but I can almost guarantee that the parent(s) still do not get a restful night’s sleep - EVER.
Although Ashley’s health has improved greatly in the last few years, I still fear a sound sleep. I am still using the napping technique – never sleeping more than an hour to an hour and a half at a time. If Ashley has not woken in that time frame, I get up and check to see that she is still breathing. My body is so trained to that nap schedule that even if I am out of town without Ashley or if she is spending the night in the hospital, I still wake every hour or so. I wonder at this point, after 10 years of this nap/sleep world I have, if I will ever be able to sleep 6-8 hours straight.
Exhaustion becomes a way of life, and unfortunately health problems for the parent can follow. For some families, services may be available to have a nurse or aide sit with their child during the night. But I believe that for the majority of parents of medically fragile children, no services exist to ease their exhaustive lifestyle. So, if you know of any families like this, the best gift you could ever give them is a night or two of sleep. Ease their fears for a short while and they will be eternally grateful.