365 Days of Diabetes

I think the morning Lily's Dad and I decided to bring Lily to the hospital will be etched in my memory for the rest of my life. The denial was over, it was time to face whatever was happening with our baby head on. Even though we both had a gut feeling we knew what it was, I think it is easy to think that these types of things will never happen to you. Never in a million years would I have thought I would have a child with type 1 diabetes. I honestly didn't even really know what it was... I had heard people saying it here and there throughout my life when talking about sugar, but I knew nothing about the different types. I remember her Dad telling me we should hope it is type 1 while we were waiting for the results because we thought that was the 'better' one. Well, be careful what you wish for haha.

The past year has been so many things all at once, I find it hard to even write out what all would have been involved. The blur after diagnosis doesn't help with trying to recall how many doctors appointments we attended in that period, how many days we spent at CHEO, the calls to the on-call doctor to walk us through every injection, the names and contacts we received, the 'diabetes bible' that was as thick as my thigh, it's all a blur... I can tell you that we have worried about Lily every single day since diagnosis. 365 days; 52 weeks; 8760 hours; 262,800 minutes. In that time we have given approximately 1825 injections, all in her arms, thighs and bum. The countless bruises marking her body showing injection sites. Around 40 Dexcom changes that I can assure you are not 'fun' for anyone. Hours of podcasts listened to, so many books read, pages of notes taken, research papers read, specialists contacted, 4 people fully trained, others partially, constantly learning new information... so much it is making my head spin as I write it out.

Out of the past year, I have had her half of the days, meaning approximately 183. I can tell you confidently that 150 of those I have been up in the night treating her. The nights that we make it through the night without her needing juice or insulin are so uncommon that I worry I slept through alarms in the mornings and have to check. I have nightmares of sleeping through them or her phone being on silent and me waking up to her in a coma. I am constantly taking mental note of what I have on hand in the case of an emergency, where her medication is, and that I need to have a phone on me to call an ambulance if needed. The way your mind works completely changes when you have an ill child. The world revolves around their care. In some ways I am grateful to have a split home so that her Dad and I can get as much of a break as possible to recharge. Without it I know that I would have burnout. And how I worry about the burnouts Lily will experience...

There are times Lily is the most easy going diabetic to care for, offering her hand for injections (obviously we can't inject into her hand but I appreciate the gesture), running over when I announce I need to poke her finger watching the blood come out and waiting for the numbers to appear. Other times I say the word "poke" and she runs and hides from me saying "no poke Mommy". I hate putting her through the pain, I wish I could listen to her request and give her the break she so desperately wants from being poked and prodded. Telling a two year old that she has to let me poke her and cause pain is not always easy, and there are times it is a fight and I need to hold her still while I do what I need to do. The guilt is unimaginable. I am so scared she is going to resent me. But what scares me more is the day I'm not there to force the care, when she wants that break and the consequences if she takes it. I know that I won't have control of her health one day and I don't want that burden on her as much as I worry about her not caring for it properly.

If she has shown me anything in the past year it is that she is so much stronger and resilient than I could have ever imagined. She is my inspiration every day. I strive to be like her, so I know that she will handle this disease with grace on her own, and I know that I will always be there to catch her if she falls, ready to take on the care when she needs a break and can't bring herself to do it. She will never be alone.

I spend a lot of time imagining what her future will look like. I saw a post recently of two T1D best friends and I almost cried thinking how beautiful of a friendship that would be for Lily. How she would always have someone to relate to and talk to about the struggles that understands. I want her to have friends and have the freedom to go do things with her friends without diabetes are doing, but I am scared that she will miss out on things. I know it will need to look different, but I don't want her missing out. I see my nieces doing all of these sports and activities, having sleepovers where their friends are just dropped off with a change of clothes, no medical devices or care instructions. Their parents are excited for a break and they can drop them off not worried if they will get a call in the night that their child is on route to the hospital from a seizure or slipping into a coma. I wanted that for Lily so bad, a carefree childhood. I want to figure out how she can be as carefree as possible with her illness, and if that means I camp out in the car down the road of her friends than so be it! Maybe the parent's will even let me sneak into the guest bedroom after she goes to sleep... my mind never stops.

I think about her adulthood a lot too. Will she chose to have children of her own knowing the possible risks, knowing she could pass on the gene and her children could get it too? Will she be reluctant to date due to her devices on her body? Will she feel like a burden? I want her to love and be loved. I want her to experience motherhood if that is what she wants. I don't want her to be alone. And I really don't want her to have health issues in her later life due to poor care... I constantly hear the horror stories of people not caring for their diabetes and having limbs amputated, organs dying, and of course early death. I am constantly trying to figure out the balance between living a 'normal' life and having levels within range. Between my mental exhaustion and being on top of her blood sugars 24/7. Between nights of injecting insulin every two hours and extending it to three hours to get that extra hour of sleep. There have been times I have silenced her alarm because we were to wake up in an hour and I told myself I can treat it then, only to start to feel sick thinking about how selfish and disgusting that is. I prefer the nights of fighting highs honestly. At least I get two hour blocks of sleep, versus fighting lows when I can get 30 minutes of sleep in four hours of time. Even the sleep you do get on low nights are not restful because you are constantly stressed about the alarm not going off.

The nights that Lily sleeps through her injections, or wakes up to say "thank you Mommy" make me so happy. I don't think I could get through this if she wasn't as loving and strong as she is. She is constantly lifting me when I get low about her illness. Playing with her and cuddling for a movie night on the days I am exhausted from no sleep are my fuel. She is the one with this disease, yet she is what keeps me going. Her health is so important to me, and I know she feels how much I love her and the pride I take in caring for her. She knows I live for her, I can tell.

I am blessed to have Lily as my daughter. I wouldn't change anything about her, as much as I wish I could take the disease for her, she is perfect in every way. I will do whatever is needed to ensure she is happy and as healthy as possible. I am grateful that there is the technology there is today, and that they are constantly researching cures. I know I talk a lot about how hard some days are, but even on the hard days I know that better days are coming. This disease is a rollercoaster and all we can do is enjoy the good days and take the bad days one at a time. I love her with every inch of my body, and we live the most beautiful life, diabetes and all. The sleepless nights and constant worries will never outweigh the feelings I get when I hug her. The times I catch myself laying with her feeling overwhelmed with love and purpose. I am her Mommy, I am her safe space and I make her feel warm and loved. I make her laugh, I make her scream scaring her, I wipe her tears and I watch her take in the world around her. I am so blessed to be on this journey with her and I look forward to constantly improving and learning. I'm here for the highs and lows baby!

Today I am celebrating that Lily is still here with us. I am celebrating her for the amazing little girl she is and how much she has endured. She truly is amazing.

xoxo T1D Mommy