It’s 9pm and it’s medicine time again and another opportunity for me to practice patience and letting go of anger.
You see, the 9pm medicine is a tablet. It comes in tablets of 5mg and I need to give a dose of 2.5mg. Now, the tablet has a groove down the middle so that you can break it in half and voila! Correct dose.
We used to get these great tablets that you could just snap in half. They are only 5mm long but just a small amount of pressure and there you go, two equally sized parts.
Recently our health insurance company changed the list of approved meds and have moved us to a generic. Nothing wrong with generics but I can’t break this tablet in half. It is also 5mm but has been set in concrete and no matter what I do, I can’t break it in half. I need to do press ups for my fingers to get them stronger! I will conquer this tablet!
Breathe. Sigh.
So I cut it with a knife. All you tablet takers out there know what happens right? Yep. One large bit. One small bit. Lots of dust.
So again I pick up the knife to shave down the large bit to the right size and then I throw away the dust and the small bit.
Insurance company take note: this is your cost cutting in practice. I now use twice as many tablets as before.
Well done.
While I’m at it, Pharmaceutical companies also note: if you say a tablet can be broken in half, then actually make sure that it can be done by normal hands. Don’t just rely on the freakishly strong fingers of people like my husband. Test it with normal people. If you’re making medicine, you are in it for the good of the people right? Why do only consumer goods companies focus on the end user experience?
Ironically, it’s a tablet meant to reduce blood pressure.
It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.
My little toddler got a stomach bug and vomited all over herself in bed. Quietly. I didn’t hear a thing and she never cried or called out to me. When I brought my eldest to bed I smelled it and saw her. Lying silently, calmly, in bed, covered in smelly puke. Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words. But if you are reading this blog, you probably know what I mean.
My heart broke.
All sorts of thoughts ran through my head. How did I not know this had happened? How sick is she? What’s wrong with her? A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her. Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.
When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.
So why do I know what I’m doing? Experience.
You see, my eldest has vomited almost every day of her life. Nowadays it might only be once a day but it wasn’t always this good for her.
She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly. (check out this website for info about this illness: http://www.barttersite.org)
One of the side effects is vomiting and at its worst, she was vomiting 20 times a day. Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve. The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.
What bothered me was finding my eldest daughter covered in puke in bed. At night I had to sleep. I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting. No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time. Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”
Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much. She looked surprised. Still. Almost holding her breath as if she was thinking “what happened? I was sleeping and now this?”
So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting. You know sod’s law right? Guess how many times I had to start all over again before I had even finished getting her cleaned up. Don’t know? Well I don’t know either, I’ve lost count.
Why did I even start this story? Oh yes, I’m having one of those days.
One of those days when the reality of my daughter’s life with a chronic illness weighs me down. When I see with full clarity the vulnerability of both of my children, of all children. It’s so real that I can almost touch it.
It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it. This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.
It’s one of those days that I go through all this and finally remember this:
I may not be able to fix it, but I can offer comfort. I can be with them, be present and loving. I can look them in the eyes, touch their hand, be with them.
I can acknowledge their reality and honour them for living it.
Acknowledgements
Inspired by my daughters and published in honour of William.
In taking care of a child with a chronic illness something, seemingly insubstantial, is lost.
The worry
Will she be ok? Will she live a normal life? Will she be happy? Will she live?
The worry is clear, solid, like a monolith pressing on your heart. It is substantial.
The work
Preparing and administering medicine, waking up multiple times at night not because they wake up, but because you need to give medicine, clean up vomit. The extra washing from a baby that projectile vomits 12 times a day.
The work is heavy, the weight of it builds up and presses you down. It is solid.
The learning
So how do you insert a nasal gastric tube into the stomach and not the lungs? How do you get a pill into a baby using a syringe because you need to give it via a feeding tube?
Turning into a nurse and thinking “I never thought I would need to know how to do this” and secretly loving the fact that you know how to handle a syringe.
This you know. These are real.
They take up time, freedom and energy. This is a very real loss and you know it.
What caught me by surprise and was the greatest tragedy of my life, was looking at my 2 year old daughter and seeing a person for the first time. There had been glimpses, moments, along the way where we connected as mother and daughter but it wasn’t until her condition was stable that I could relax and I actually saw her, a person.
Her life was less precarious, the stress was less, the work less intense, she was having good days, feeling good, laughing. I had time to breathe and breathe deeply; to look and see this is my daughter, my baby.
Looking at her face light up with joy, the mischievous look in her eye, the brilliance of her spirit I wonder: how often have I not noticed? How often was I too busy with the syringe, trying to keep vomit out of her hair or had turned away once the task was done? How often have I looked at her and seen only the illness, not her?
This loss often goes unnoticed, and therefore seems insubstantial. This is the greatest loss. Losing the one you love when they are right there, with you, wanting to be seen.
I do see my daughter. I can separate the attention I give her illness and the attention I give her. She feels it too, although she never mentions it. I can see it in her eyes.
However, I know that if I don’t do something that gives me energy, if I don’t recharge, have fun, laugh, cry, have time to myself; then I lose her. I stop seeing.
The illness is always there and is demanding. It screams for attention and gets it. Uses up my energy until I am weary.
She doesn’t scream.
So I have learnt to look after myself. I find a way to have fun, cry, let off steam. Let someone else care for her, even if they won’t do it as well as I would. I need it. I take it.
Then I can see.
So who is she?
Funny, smart, quick, shy, too hard on herself, cunning, determined, scared. She is beauty, in all aspects.
She is a person.
amber rahim 