What does it mean to be the parent of a medically fragile child? It means having a closet full of medical supplies. It means having a shelf full of medical machines beside your child’s bed. It means owning a pulse ox (measures oxygen levels) and knowing what good, mediocre, and bad levels are. It means having a stethoscope and despite never going to med school knowing how to check a heartrate and check for good lung sounds.
It means having the insurance number saved in your phone. It means knowing more about your insurance benefits than most of their reps. It means knowing that if the doctor puts “bi-pap” in their notes instead of “trilogy machine” and your child doesn’t weigh 60lbs insurance won’t approve it. It means knowing what DME, co-pays versus co-insurance, rehabilitative versus habilitative and other terms mean. It means spending countless hours on the phone on hold with doctors offices, medical suppliers, and insurance. It means fighting for your child’s best interest, daily. It means owning a million braces for all different kinds of things. It means fighting to get equipment like a stander, special seating chairs, potty chairs, bath chairs, lifts, etc. It means owning your own medical masks for your child to use in public. It means changing plans just because the cold is going around. It means your day changing in a matter of seconds. It means when that child gets that “little” bug going around it hits out of nowhere. It means packing hospital suitcases, just in case.
It means making a back up plan for all your other kids and plans for the next day. It means enormous guilt at the thought of possibly “abandoning” them once again because you can’t be in 2 places at once. It means rushing around after they’re all in bed to get laundry all done, the dishes done and the house cleaned because you may be gone for a week or more. It means having an “Emergency Hospital Bag”.
It means throwing all your chargers, books, tablets, etc. in a bag to be prepared. It means taking 30 minutes every 4 hours to use all those machines on your child trying to keep them out of the hospital. It means setting alarms for every 4 hours to do them even overnight.
It means cleaning up the flood in the bathroom that happened while you were doing that because your other kids were unsupervised in the tooth brushing routine. It means sleeping in your child’s room with them and waking up every 5 minutes just to check on them. It means you aren’t sleeping in your own bed until they are better.
It means that the reality of your morality and that of your child’s is always present. It means you’ve thought about what life would look like without your child in it. It means that your life looks nothing like you planned. It means letting go of all of your “preconceived ideas” about your child’s future and your future. And despite all of that being hard, and tiring, and overwhelming, it means that you are blessed. Blessed to learn to let God be in control. Blessed to meet so many strong, amazing people. Blessed to have learned how to appreciate the moment, to stop and enjoy the little moments. Blessed to have that child to care for. Blessed to have that insurance and those doctors and braces and machines. Blessed to have those friends to help care for your other children. Blessed to have your eyes opened to all the many, many blessings you have in your daily life. Blessed to see God work in so many ways. What it means to be a parent to a medically fragile child is to be blessed beyond measure.
He shall receive the blessing from the Lord , and righteousness from the God of his salvation.