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.
Still here?
Good,
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.
Imagine courtsey of Shutterstock
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.
Image courtsey of Shutterstock
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?
I can.
Thats crazy. My knowledge of diabetes is fairly limited….setting it to when she sleep!…..hormones….stress. i cant even imagine. Huge responsibility
I get it. Tomorrow is ‘D-Day’ in my house. Seventeen years tomorrow I became my youngest son’s pancreas.
Can I imagine being an organ 24/7? Yes I can. My 11 year old daughter also has T1D. I am constantly praying for enough wisdom and grace as we walk this journey. It ain’t easy. But we’re still here!
All the best to you and your family!
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Very moving and thank you for sharing this. I’ve been T1 for 35yrs and counting. When your a child not to much thought goes into planning your day. Only after being handed the syringe did I fully realize how much it required to manage and maintain my diabetes. My only wish is that we get a cure that we all deserve
I love this blog. It explains how serious type 1 diabetes is in a way that people who don’t know about it don’t understand! Definetely sharing, best blog I’ve read in a while
This is a wonderful illustration of life with T1D on a pump. Thank you for creatively finding a way to share our story to those who have no way of truly understanding the depth and breadth of being our children’s pancreas. Would love to see a version that relates to MDI.
This is a great post. What a wonderful analogy. I’m a parent of a type 1 son so I fully understand. People without proper knowledge never fully understand. But what a great way to help it make sense
I really do love your analogy! I do it for four T1D’s – myself and three of my four children. I’ve used analogically based scenario’s in attempts to explain things before too – Thank You!