Just imagine with me for a moment if you will.
Imagine your child in front of you, and a doctor at your side. The doctor tells you that your child’s lungs are starting to give up, and within a matter of weeks they won’t work anymore. They will merely be a defunct organ inside their otherwise perfect body.
Imagine the instant fear and worry.
Then, stay with me.
Imagine the doctor handing you a small medical device, no bigger than your hand. Then imagine him walking to your child and attaching a similar device to her body via an injection and connecting the two via bluetooth.
Now, finally imagine the doctor explaining that you need to be your child’s lungs from now on. That you can set the device in your hand to tell the device in her body how many times her lungs need to inhale and exhale every hour.
But the device will need programming for every hour. You will need to inject her in a fresh site every two to three days, even those of you who are terrified of needles will need to become a dab hand at cannula changes.
You will need to tell the device when she is exercising and will need to breathe more rapidly. It will also need to know when she is sleeping so you can slow her inhale/exhale down to a nice resting rhythm. But don’t forget if she has a nightmare she will need to breathe quicker again – how can you pre program for that.
In your hands you hold your child’s new lungs – you are your childs new lungs. You need to pre plan their day, pre empt what to do when they go for a sudden dash across the playground.
You need to live with the knowledge that if you get it wrong, you may be a factor in making your little loved one terribly ill.
I struggle to imagine being my child’s lungs.
But I am my daughter’s pancreas.
I control how much insulin she has an hourly basis, I factor in how exercise will lower her blood sugars and stress will send them sky-high. I try to manage how hormones will impact on her insulin needs, and I spend most nights by her side, checking her blood sugars making sure that what I have programmed that day wasn’t wrong. That I am not a factor in causing my child to become terribly ill.
Not everyone understands Type 1 Diabetes – they think it is a condition that can be controlled with time. It isn’t, it can be controlled only by a parent or eventually the child themselves. We were not made to be our children’s lungs or pancreas’, and some days the thought of acting as an organ can be rather exhaustivingly overwhelming.
But it is not a choice, simply a challenge.
Can you imagine being an organ?