Each day after I get my older kids off to school I begin the marathon called Keeping Parker Alive. It is a marathon of medication schedules, feeding schedules, breathing treatments, therapies and cares.
Bath time consists of removing two ostomy bags, (careful of the mess!) the dressings around a g-tube, the bath itself, keeping Parker’s hands away from the above mentioned areas, reapplying the ostomy bags to a wiggly and by now frustrated little boy, keeping those hands away, reapplying the dressings to the g-tube site, keeping those hands away, along with the usual lotioning, diapering and clothing.
Oh. And then comes trying to change the trach ties without having the trach itself pulled out and thrown across the room. Excitement abounds at our house each and every day.
It is a two person job that I manage by myself more days than not. With two people it is a 30-45 minute job. By myself it is more like an hour. And that doesn’t include the clean up of wrappers, tape backings, old trach ties, and the like that have been hastily thrown about trying to get things done as quickly as possible.
Reading about this experience is no where near as exhausting as being an actual participant. Especially when a few hours later one of those ostomy bags is sure to fail, and the whole process has to start again.
Next on the list are the 10:00 a.m. meds moving on to 11:00, 2:00, 4:00, 5:00 6:00, 8:00 and finally 10:00 p.m. meds.
Parker is fed via his g-tube 4 times a day and then hooked up to continuous feeds at night. He also has ‘in his highchair’ eating experiences where we try and not lose the small amount of oral motor skills he has.
Parker’s trach needs to be suctioned often this time of year. We start out by adding a several drops of saline down his trach in order to soften up the gunk in his lungs. Then we stick down a hollow tube and suck out the saline as well has the mucus up and out. It is something he hates. I do too. This kid has had enough discomfort and yuck to deal with. I hate having to add to the pile.
Therapies are several times a day for anywhere from 20-30 minutes at a time. Any parent with a child who has special needs will tell you the guilt they feel at putting in a load of much needed laundry instead of the time being spent in therapy activities. Your house winds up going to hell. You try to put blinders on, but the knowledge of the dirt still leaks into your mind via some kind of Mommy Osmosis.
With Parker’s medical issues, he can’t be in a room alone during the day….much less at night. So at night we drag up an old mattress from the basement and lay it on the floor of Parker’s room to sleep on. This is the only way someone can hear the alarms on Parker’s several monitors go off and attend to their demands. And the monitors, they go off quite often. A good night’s sleep is rare.
By late afternoon when my older kids come home I am exhausted and quite often cranky. But that doesn’t matter. My other kids still deserve a Mom too. I attend to homework, listen to the events of days while trying to make something for dinner and get loads of laundry done.
Reed has taken over Parker Patrol by this time. Like a sprinter handing off the baton, Reed takes over mixing a new batch of formula with microlipids, looks at the schedule to see what meds are on deck and then handles the next ostomy bag clean out and the change of clothes into pajamas that signify the close of another day.
We’re doing nothing that thousands of other parents of medically fragile kids aren’t doing. We don’t do it because we are saints, heroes or anything even close. We do it simply because we are parents that love our kids and want to keep them around for a long time to come. We may have different ways of doing what we do, different ways to cope, different challenges to be met.
But there is one thing that I think we would all agree on:
It takes a parent of a medically fragile child to truly understand what another parent of a medically fragile child is going through. It doesn’t matter if your next door neighbor’s sister in law’s best friend has a chronically ill child. You have to live the experience. Face the fears and stare down the demons. And still have what it takes to get up in the morning and start all over again.
Parents of children who have a tendency to live their lives constantly circling the drain already carry enough burdens on their shoulders. They don’t need the added weight of the judgments of others heaped on there too.
Why is is so hard to understand that some parents may experience times that they are in need of support…….for as long as it takes their child to get well? Why is that need so often perceived as a weakness? A character flaw. Something to be gossiped about with self-righteous vigor?
I don’t see this as being ‘needy’.
I see it as being human.