Three years ago
Everything changed...
Three years ago we almost lost our sweet boy. It somehow feels like it was just yesterday and also forever ago. It’s hard to believe that just six months after diagnosis the pandemic came.
We are still all coping with the trauma of that day and how it changed our lives forever. Our whole family is different now. We have struggled a lot - I don’t want to sugar coat it because no amount of sweetness can erase the dawning realisation that your child will have to be vigilant their entire lives just to stay alive.
There are so many brave kids like Eddie, waking up to lives that will never be the same again. These kids are so incredible. They carry so much.
Each day I get messages that say “my friend’s daughter was just diagnosed - what can I do to help them?” and “my son was just diagnosed - I am so scared”.
I knew nothing about type one diabetes (or any kind of diabetes) before our son was diagnosed. And I am amazed that I didn’t. All of these people going through so much every day - and I never noticed. It is just life for so many, this is just how it is - and they carry it, even though it’s so heavy. They have to.
We asked him what he wanted for his “diaversary” and he said he had everything he wanted.
But I wish he really did - I wish we could cure T1. I wish all families and adult diabetics could afford the tech required to save their lives and their kids’ lives and I wish our successive governments weren’t so shortsighted with the Pharmac budget.
I wish it wasn’t a bank account lottery. It’s so unfair.
I wish kids and their parents didn’t have to fight for basic healthcare.
But I’m also trying to be positive - Eddie’s been doing well. My friends have laminated sheets on their fridges explaining how to manage his levels, they sat with us while we showed them how a glucagon works. They keep offering sleepovers and we’re working on having the confidence to say ‘yes, let’s do it’.
He will be 10 in September and we have had him for 10 amazing years - through multiple surgeries, through terrifying ambulance drives as they tried to make him breathe, through ED doctors pulling him off us and racing away into surgery.
Others are not as lucky as us. And I think about them all the time. I think about all the families we met who didn’t get to bring their babies home. I think about those who have been fighting for so long only to face more and more challenges.
I’m so grateful every second with have with our kids. It’s never promised.
For now, I ask what so many parents of fragile children ask -
Give me courage, when I feel so afraid.
Give me strength, when I am so tired.
Give me knowledge, when I don’t know what to do.
Give me clarity, when I’m so confused.
Give me peace, when it all seems so unfair.
Give me fortitude, to fight for my child and to fight for others.
Give me grace, to be there when others need me too. To find space to hold others too.
Give me patience, give me hope, help me find joy -
no matter how lost I am, help me find the way.
no matter how dark the nights are, help me to see the stars.
Thank you, we are currently in the hospital with my 2 month old who has RSV. We are getting discharged but now I'm so scared we'll catch covid too. It's just not fair on our little ones..
A diagnosis like this is so scary. Thank-you for sharing this with us, especially with how hard it must have been at the beginning (and continues to be each time he has an unexpected high high or low low).