I have written before about the question that I get asked a lot in reference to running a business, parenting three children, tending to a home and of course, caring for a child with special needs. And I am sure there are many of you that relate when asked ‘how do you do it?
’. However, I have to wonder if anyone really knows what ‘it’ is?
‘It’ for each one of us parenting, or tending to someone who has any kind of need is so vastly different. Caring for an aging parent, is different than caring for yourself when you are sick, and is different still when caring for a child who has a need. Our ‘its’ are all different, unique to our own circumstances. And none really less or more, just different.
I thought I would share what my ‘it’ is tending to a child with a life limiting illness. Some of the pictures I am about to share may be disturbing, or perhaps, disrupting of one’s perspective of my ‘it’.
Our day begins at 5am, when I am up giving Sophia an injection. Keep in mind, these injections occur every three hours, around the clock. So in theory, I was up at 2am as well.
At 5am after Sophia’s shot, I tend to go back to bed but most mornings lie there semi awake, going through the task list in my head. By 6:30am I am wide awake and the morning hurricane of three children and working parents begins.
For Sophia, herself, her starting gate begins at 7:00am. I get her up, or at least, try to wake her up with kisses and good mornings, to which she will either respond by putting the blankets back over her head or exclaiming as she looks out the window, “Look, Mamma, it is going to be a sunny day!”, even if it is pouring with rain.
I wash Sophia up either by giving her a quick rinse in the shower, or with a wash cloth. Sophia is not ‘dry’ over night and requires the use of pullups and tenas. So, it is important to get her a fresh start.
Typically, by 7:30am, we can count on one of our nurses to knock on our front door and walk in. There was a time I used to worry about my morning hair, or the state of my house and would even get myself up, showered and dressed before they came. I don’t do that as much anymore.
Our nurses prep all of Sophia’s morning meds and help make her breakfast. They feed her in between packing up her lunch and snacks, meds, and extra formula for her day at school.
Sophia is excited about school and is always eager to get through the morning tasks and routines. She ends her pre school time hooked up to a mask with medication in it for her little lungs then brushes her teeth. She then waits anxiously by the front door for the school bus to come and pick her up. My UK nephews affectionately call it ‘the block of cheese’.
Most days, Sophia is able to go to school where she enjoys learning, reading, sharing time with her friends and daily activities in the community. She gets tired and by the time she gets home and is dropped off by the cheese, we know we have a few good hours left before she crashes and burns.
Throughout her day in school, her little fingers get poked to test her blood sugar before every shot and meal or snack. She is constantly hooked up to her backpack which carries a feeding pump and some souped up formula mixture to keep her sugars stable. Toss in those three hour shots and six hour pain meds and she is doing more than reading, writing and arithmetic.
At home, we have the usual dinner time chatter a family of five can create. A lot of yacking, some ‘eewww, I don’t want to eat this’ and a good round of ‘is there any more?’. Ahhh, got to love boys.
By the time 6:30pm comes around, Sophia is exhausted. Though, if you ask her, she will deny it by saying “I’m not tired!” and forcibly raise her eyebrows and open her eyes wide. It has become a bit of a joke now.
And, like the morning routine, it is compiled of syringes, needles, masks, whirls, gigs, creams, gauzes, and of course, plenty of hugs and kisses.
In the course of one day, Sophia requires 8 injections, that is 2,920 needles a year, ten syringes of medication, 3,650 annually and between 8 to 10 finger pokes a day, again no less than 3,650 finger pokes per year. And plus some, should she become sick or require even the simplest of eye creams, or ear drops, antibiotics. Never mind the fact twice a week we have to change the needle catheter in her leg, and every twelve weeks the g tube in her stomach. Oh, and every ten days, the batteries in her hearing aides.
There is more, of course. 365 tenas, 600 2x2 gauzes, 4,200 test strips, 60 feeding bags, 45 feeding tube adapters, 75 insuflon catheters, 364 cans of pediasure, 72 cans of polycose…need I go on? I hope if I every forget a meeting or am running behind, or am late giving you something, you can cut me just a little slack?
So, when you next ask me how do you do ‘it’. You have a slight inside loop on just what that ‘it’ is and all it entails not just for me, but for Sophia. And that is how I do ‘it’, because of this amazing little girl who wakes up in the morning and exclaims, even on the darkest days, ‘Look, Mamma, it is going to be a sunny day!’.