GIULIANA WAS DIAGNOSED WITH TYPE 1 DIABETES FEBRUARY 2014
Our lives changed. Her life changed. My life changed.
It was all a little overwhelming the first few days... wait!!! Who am I kidding?! 2 years on and it STILL can be just as overwhelming. This disease is 24 hours 7 days a week. There is no time for a break EVER!! You know when you are drifting off to sleep, you know... that feeling of your head sinking into your pillow. It feels like a lead weight. Are you with me?? Are you feeling relaxed just thinking about that feeling?? Just as you are drifting off arriving onto that deserted Island sipping cocktails BEEP BEEP BEEP BEEP... there isn't any time for that cocktail on that deserted island right now. BOOM I'm awake just like that. There goes that lead weight feeling, gone.. within seconds!! Bye Bye Sleeps, I'll catch ya one day!! I check her dexcom monitor, it is warning me she is LOW. I have to climb out of bed, check her blood sugar again, however with a finger prick to ensure the monitor is accurate. Once I know its correct I have to get sugar into her body before she drops too low that she may go into a diabetic coma. This has all happened within minutes. Can I go back to sleep now?? Nope.. not just yet. I have to wait to see her number rising so I know she is SAFE. This could take up to 30-45 minutes. Some nights the alarm may go off all night so this mamma here has about 4-6 hours of broken sleep (if I am lucky). Remember that newborn baby stage of waking up every few hours a night to feed. Yep... that's what it is. That feeling right there however I don't just have it for that "newborn stage" I am going on 2 years now. 2 years of no regular sleep. Some nights it may be HIGH so I have to check for ketones to ensure she hasn't got any. Then I give her insulin to help her come down. Too HIGH is dangerous and she may go into DKA (Ketoacidosis), this is Diabetic ketoacidosis (DKA) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death. Remember me saying I suffer from ANXIETY? Well this is one of the major reasons why. LIFE isn't just that simple anymore
LIFE is far from simple. So let me give you a run down of my day to day routine I have with my WARRIOR Little Miss G.
ALARM ALARM ALARM - WAKE UP WAKE UP WAKE UP at this point I've probably had about 4 hours of broken sleep. (It varies, some nights I get 2 hours on a rough night some nights I may get to sleep through. (Remember those nights when your baby sleeps through and you wake up thinking the worst... check if they are breathing, I smile at this as we all do it, just mothers being mothers <3) That's what I do when her numbers have been great all night. For that split second my heart drops. I look at her chest and then a sigh of relief I nod back off waiting for the snooze alarm to go off. Yes, she is 5 and yes she still is in our family bed. I want her besides me and it helps me relax and helps her too. I'm hoping when she start Kindergarten in September that she will go into her beautiful room that we have for her. I ask her periodically, hey wanna go in your room with a smile, and she says NO. So I guess I am ok with that at the moment because secretly... I do not know if I would sleep well without her besides me. The monitor would work and wake me up if she was in her room so I don't exactly know what I am scared off. aghhhhh just the thought of maybe for some reason I didn't hear the alarm. I cannot even bring myself to type it, so I will leave it at that.
So I wake up... I ensure our son is up getting ready for school. He is 11 so he can pretty much look after himself which really does help a whole lot. <3 LOVE HIM!! I wave him goodbye and tell him I love him and then I get back to Giuliana. I check her blood sugar with her glucose meter so we know what numbers we are starting with. Then she has breakfast. I count the carbs and I give her the insulin to account for her meal. I give her the insulin before or after the meal depending on her numbers. If she is high I will give it to her straight away, if she is low I will wait for her to eat first then give it to her as sometimes she won't want to eat. So if I give her insulin on top of her being low (assuming she is going to eat) she will drastically drop into danger zones. She does this quite often which is scary. A morning isn't just a simple morning. Half the time we are running late as I have practically have to coach her to eat. Some days are more challenging than others. Some days she is easy and will eat with no arguments.
Every day is a CHALLENGE with this disease. YOU CANNOT IGNORE IT, IT WILL NOT GO AWAY!!!
So in the midst of all this, I fill 4 syringes for her daycare/pre-school. 1 unit, 1.5 units, 2 units and 2.5 units. I get her lunch ready, and carb count every single item in her lunchbox so the director know how many carbs shes eating and then gives her the correct syringe. I am so grateful to have the daycare/pre-school as part of her care team. I can somewhat relax knowing she is in good hands. We communicate throughout the day. The beautiful thing with the dexcom (the device you see here on her arm) is the phone app follows her numbers so I get the alarms through my phone. So if her numbers are going out of whack at any given time, I call or text the director to ensure she has it covered. So even when I am not with her I am still on top of it. When she gets home we have dinner and the whole rigmarole of is she going to eat or not comes into play yet again. We give her the insulin shot either before or after her meal depending on where her numbers are. Usually more often than not, her numbers are high when I pick her up as shes just had a snack so I pretty much give her insulin as we walk through the door. Then at 6pm every night she has her long acting insulin. So she has 4 shots a day, some days more to STAY ALIVE. Still cuts me deep when I say that!! ughhhh!! You can never have a break from diabetes, it doesn't allow you to have a break.
Even as I am typing this in another room, I am continually checking her monitor to see if her numbers are ok. Crazy life huh. From time to time I have breakdowns, this is normal to me now to have them. I find it helps me deal with my emotions, let all the stress out and then start again the next day as a new day, refreshed and ready for the every day challenge I live.
PARK LIFE. Going to the park isn't just like any regular trip out with kids. I have to ensure I have her monitor, her testing kit, her glucagon pen, her insulin, ice packs, juice, water and tattoos that I put on her hands so people are aware she is DIABETIC. The tattoos state INSULIN DEPENDENT with my number. Hey you never know... all it takes is a blink of an eye and your child could be running off and then passes out. I like to think ahead!! Once at the park I have to check her blood regularly as when she is running about she is burning off sugar so she could DROP, hence the juice ;-) Everything I mentioned above, I take out with me regardless where we go. I have to, I am basically carrying her pancreas.
SCHOOL LIFE. This scares me. I hear horror stories all the time. However with that being said I have had meetings with the school she will be attending and I have confidence in them which is HUGE. I am leaving my daughters life in their hands after all so I have to feel confident. Otherwise I wouldn't stop looking until I knew I had that support system within the school. I have to go in and train her teachers, assistant, tell the school nurse how its done. Each child is different. I do not care if the nurse has dealt with diabetes before ONE MILLION TIMES. I will teach her everything I know about Giuliana and her diabetes. I don't need "know it alls" when it comes down to my daughters life. She is my baby and I'm trusting people with her life. It is serious. How can I walk away with not giving people the proper instructions. After the meeting with the Principle, she assured me she will keep her safe and even had a teacher in mind for Giuliana. That made me happy. I do feel like a ton of bricks have been lifted off my shoulder just hearing her say that and just knowing her job is the safety of her students before education. PERFECT ANSWER <3 Thank you THANK YOU Thank you.
I used to hang out with friends quite often, go on date nights with John but nowadays I don't. That is my choice. I cannot afford to have too much to drink and then something happen where I am incapable of driving Giuliana to ER. How would I ever forgive myself? I do go out from time to time and have a couple of drinks and that is it, nothing too crazy because I need to be on top of things when I get home. So its pointless to me to drink alcohol (waaaaa waaaa lol). When I am away from the children on vacation/holiday or business trips, this is my time to unwind, maybe have a drink and hey GET SOME MUCH NEEDED SLEEP as I know they are in safe hands with their daddy. Also nana and grandad are hands on too so John can set out to work early hours. A huge thank you to my mum and dad for their support. They help me on the days when I just need that break, that quick cat nap due to no sleep. As I said earlier, blessed with my family.
Just a little insight of my day to day life with Giuliana. I could write for hours on end but this mamma has to get some rest before the ALARM goes off xo
THANK YOU FOR READING xo