On the 8th of June our youngest son was diagnosed with Type 1 Diabetes. A life changing autoimmune disease with no cure. He’s seven years old.
We were thrown into the deep end of understanding insulin, injections, carb counting, hypos, hypers, finger prick testing, continuous glucose monitor insertion, 2am blood glucose level checks. In an instant. Like a switch had been flicked and now – Hey! Welcome to your new life.
Our carefree bubble we had been living in had burst.
Each time my turn rolls around to share here in this space between beautiful, thoughtful, diverse women, I really ponder what to write. My friends here come up with the most wonderful pieces; topics I would never think to entertain. I have always tried to write honestly – on my own blogs for many years before joining this collective. Share what is happening now. And for so long, it has felt dark and heavy. And I think – how can I write about this shit again?! Nobody wants to hear about MORE fog and weight. But in the next breath, I continue to acknowledge – this is my season. This is what I know. This is my season of darkness and weight and that’s just the way it is right now. And the light will – eventually – shine brighter than before. I do know that. Deep in my bones, I know that. But sometimes it’s so hard to wait for it to appear – with patience and grace, anyway.
In the tiniest ways that sometimes feel like the biggest, we have grown. My goodness, we have grown. In just eleven weeks (both the longest and shortest of my life), we have grown beyond measure. Far beyond where I expected to be. So much information and change. Always trying to stay two steps ahead. I am grateful to bear the weight of this disease while my son is just a boy. My darling son must endure the constant pricking. While I endure the late nights and early mornings, the sticking needles into my perfect offspring. I endure the constant education and learning and special food preparation and carb counting, the medication, the clock watching, the planning, the school meetings, the putting my trust in others to care for my son when we are both at our most vulnerable.
His brother and sister have been patient with me. In all my efforts to continue to spread my attention between them evenly, some days I have failed miserably. And they have understood. They have squeezed their arms around me when they could see I needed it, they have sat and wept with me on the kitchen floor. Their childish innocence has meant they see their brother no differently than before. There is still laughter and playfulness, roughhousing and scooting. Their innocence is juxtaposed against the responsibility they have taken upon themselves to care for him when scooting in the street, in the schoolyard, at the park. Whenever he is out of my sight and only in theirs.
We are enveloped in the love and unwavering support of my family. When we’ve needed something, it arrived. Meals, whitegoods, books, information, wine, groceries, sleepovers, phone calls, hugs, open ears, encouraging words, laughter. Of all the things I am blessed with in this life, my family stands the tallest.
He hasn’t changed. He is still the brightest light. Allowing the changes to unfold, to carry them on his back, to take into the classroom, out into the street to play with his friends. He has barely skipped a beat. I have always said he was cut from a different mould – he is not the same as my other two. He is weird and wonderful in the most spectacular ways. And now he is different by way of bodily science. And a dicky pancreas.
The grief that comes with such change is unexpected. I have grieved – deeply – for the loss of our carefree life before his diagnosis. When it didn’t matter if we played at the park for an extra hour past dinner time, or when he had an extra piece of birthday cake. Now, it must all be accounted for. Now, those things – and more – have consequences. The grief is all its own – there is no control. It has hit me in the strangest places, at the most unexpected times. And I have allowed it to come. Trying hard to welcome it in the bottom of the shower, long after the kids are warm in their beds, deep asleep. Success is hit and miss. It is so hard in the early days, when the wounds of change are fresh and wide open. But as I have known for many years, the best healer is time. And while it never seems to move at the pace we long for, it does its simple job. To heal, to bring clarity, perspective and hope. And generally, wisdom. Wisdom that it will all be okay. We will manage. Just like the thousands of families living with this shadow. And he will be brilliant. Just like he was always going to be.
And – stretching to darker places – I continue to remind myself – he is here. Outside of the dicky pancreas, he is perfect. Yes, we have new, difficult and ever changing challenges to face. But everyone has their challenges. I questioned whether I should share this today. I don’t ever want it to define him. Never. I want it to be in the background. Way in the back. Is it even my story to tell? Yes. I am now the mother of a child with special needs. That is my truth today. It is the thing fighting to be heard above the other ideas I toyed with before tapping the keys. And perhaps it will help bring perspective or light to someone who needs it today. Challenges, yes. But he is here. We will make it through.
Our (new) normal is creeping back in. Our school routine has returned, blessed to feel complete faith in the women entrusted with his care when he is not with me. The days between meltdowns on the shower floor are much further apart. There is less wine. I have finally returned to the mat for early morning yoga. Sleep routines are returning. Self care is returning. I am beginning to pick up my camera again. While everything has shifted, we still return home.
There is so much to write. So many words. They float around in my head like a whirlpool, overlapping and not making much sense. For now, that is enough.
I must thank this beautiful bunch of women who rallied around me – from all across the globe – when I had to put my hand up and say I couldn’t make my last deadline. The weight was crushing me and knew I had to ask for help. Just like that – it was done, taken care of. Love, warmth and comforting words flooded my way and it is with deepest gratitude that I say – thankyou xx