We’re almost 3 months into my son’s Type 1 Diabetes Diagnosis and if you asked me how we were doing, I would tell you we’re managing. Because we are. Managing means I’m still traumatized about my kid going into Diabetic Ketoacidosis (and going to the children’s hospital in an ambulance and spending two days in the Pediatric ICU) – read that post here. Managing means learning a ton about Type 1 Diabetes to be able to help him. My son takes 4 shots of insulin a day and checks his blood sugar a gazillion times, even with his Dexcom Blood Sugar Monitor. Managing means I count every single carbohydrate that my son ingests and I make sure I tell him the correct dose so his insulin can cover that food.
Managing means that I bargain with him to take his insulin and eat his meals. I count out his carbs for his lunch so the nurse can give him that dose and I mark out how much each meal is carb wise. I make sure he has no carb snacks in his backpack and in the apartment so he can have a snack without giving himself a shot (that’s 2x a day he needs to snack). Managing is changing the way I plan meals so I can make sure he gets the correct ratio of carbs. Managing is making sure I count out his meal first so he can take the time to take his insulin and then eat dinner. I have to make sure we have enough insulin, needles, alcohol prep pads, lancets for his blood lancing device (we have 2 kinds), plus his Dexcom blood sugar supplies — and a place to put all his used needles and whatnots.
Managing is talking to the school nurse several times a week (in the beginning of school I was there every day and then spoke to her on the phone constantly). Managing means keeping candy and fast acting sugary or protein snacks in his backpack that he can have if his blood sugar is low. Managing is carrying glucose tabs on me so I can boost him if he’s low. Managing means I always know when I have to make sure he eats and managing means that I stay home because I am afraid to hire a babysitter to take care of things. As a blogger, going to events at night is a good opportunity for me, but unless my husband or a family member can help, I stay home. Managing means that I check on my son at least 2x a night.
Managing means all the times I’ve woken him up with either high (calling the endocrinologist on call) or low blood sugar (to make him have 15 carb snack). Managing is hoping he will wake himself up if he feels low. There have been more nights than I care to remember that we’ve been up – I feel sometimes like I’m back in those newborn days, when I didn’t know what I was doing, but there I was, getting up with my child and trying to help him. I have to be the parent that’s vigilant as my husband’s work schedule is harder — and did I mention that I had to cut back on work that I was doing because I need to deal with his diabetes? I haven’t even processed that yet, but luckily, it’s becoming second nature. Managing means that I need to start working because I can’t let this consume me.
Managing means I function as my child’s Pancreas – to quote my new friend Gretchen who battles this awful disease with her daughter. Managing as so many parents are — but it doesn’t necessarily mean that this is a fight that we’re always winning. I hear about parents battling stubborn lows or highs — and puberty hitting and throwing everything out of whack. We’re not there yet — I think we’re still honeymooning as they call it. Managing means that I call the endocrinologist’s office and speak to the staff about decreasing or increasing his night time insulin. Managing means I drop everything if he tells me he doesn’t feel well (either low blood sugar or a regular cold). Managing means that I keep track of his carbs for meals and doses of insulin. Sugar isn’t a factor in this, it’s only carbs. He needs around 200 a day. That’s what I focus on. And don’t get me started on when people joke about diabetes and sugar. I have no sense of humor and have to bite my tongue. Type 1 Diabetes has nothing to do with sugar, it means my kid’s body isn’t producing insulin. My son has always been underweight.
We are managing. This is our new normal.
But on the other side, I haven’t thought too far into the future. Right now, as my husband’s late grandmother used to say, “I’m taking it day by day”. Right now, we are okay. Right now we are managing. Right now my son is actually waking up every morning, but I live in fear of him going into a coma or worse. That is why I insist that he uses the Dexcom monitor, even though he hates me putting it on him. This is why I check him 2x a night.
While my son’s Type 1 Diabetes won’t turn into Type 2, there can be the same complications. Did I mention that my father (now 80) has had Type 2 for over 20 years? He’s not insulin dependent, but he has had complications and gets shots in his EYES. I’m at risk also, because I had Gestational Diabetes with my last pregnancy in 2010 and I am doing everything in my power NOT to get Type 2 myself. I had to take insulin from month 7 to when I gave birth and it was only once a day. I would wake up in the middle of the night when my blood sugar dropped and have to eat crackers. It was honestly one of the worst feelings in the world, to feel your blood sugar drop like that and my handsome 12 year old son has to worry about his blood sugar dropping every SINGLE DAY for the rest of his life.
I worry that my son will just start ignoring doctor’s advice and not take his insulin. I worry that there will be danger down the road. I worry. I don’t even dare think about fatal complications. I just can’t… yet.
And yes, he’s gained 17 lbs since he was in Diabetic Ketoacidosis and was in the Pediatric ICU, but that is the ONLY damn silver lining in this. I hate this disease and I hate that my child has to go through this. It honestly sucks.
I am lucky that my husband listens to me and checks him at night if I am not home. I was able to go away with my daughter in October for the weekend and I went to LA this past weekend and he handled things well. I’m going away right after Thanksgiving on a trip to Israel and my husband, inlaws and my mom will be managing everything. I will be checking in as much as I can.
But we are managing. If you can call it that. I just wish we didn’t need to manage, but could cure Type 1 Diabetes.
Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.
Our Diabetes Story: My 11 Year old Son Went Into Diabetic Ketoacidosis and Was Diagnosed with Type 1 Diabetes
Our Diabetes Story: Type 1 Diabetes Update for My Kid, Two Weeks In
Our Diabetes Story: It’s Been 1 Month Since My Son’s Type 1 Diabetes Diagnosis and Hospitalization
Thank you for your handy list of no/low carb snacks
My story is like yours today is our first day back from the hospital and anxiety is overwhelming
At the hospital they keep telling us we can do it but I know it’s a hard journey ahead on the flip side my daughter is alive and a hope for the future we didn’t get a call at 1:00 am to rush her to ER for cancer but for a new way of living
I hope this becomes easier
The Mama Maven says
I’m sorry Tiffany. I hope you can find some peace with her diagnosis. I’m going to send you an email now and see if I can help at all.
Every day you inspire!
You sound like a great mom. You and your son are lucky to have each other. Wish you both the best!
The Mama Maven says
Thank you so much!
Alaina-Lee Monster says
I can’t even imagine how difficult this must be to go through. As a mom of 4, my heart breaks for you. My friend’s daughter had type 2, and it’s hard. But she has built a great online support community, and just takes it one day at a time. So much love and strength to you and your son <3
I wish there was a cure for Diabetes
Positive thoughts and vibes to you all the way from Caribbean ❤?
Esti Berkowitz says
This is so interesting and I give you such praise for what you do! You are a great mom, wife, and friend!
Jeannette Fender says
Saying I relate doesn’t even begin to cover it. Like you, I feel like we are managing. The fear, the worry…it’s almost overwhelming at times. I find myself asking why my child. My tires T1D mom heart goes out to you. I wish neither of us were on this journey but I know we will keep managing. Hugs!
The Mama Maven says
Anytime you want to talk let me know. I know that I’m a little further into the journey than you are and I don’t want to overwhelm you.
Laurie Nykaza says
My son came down with it at 22 months old and is going to be turning 33. Make sure they check him for Celiacs disease it can cause a lot of problems some Dr’s check for it others dont. Make sure you have an IEP at school and the staff are trained for insulin injections and glucagon as well. My cases are in the ADA hand book for attorneys under Irvine Ca you need more than a couple of people trained to take care of his needs , also don’t let them test him in school if he has had a low BS even the day before the research we used was by http://www.hypodiab.com/article.aspx?volumeID=13&issueID=16&articleID=78 about how lows effect the brain and can effect testing. a lot to learn but you can read up on this and help your son through school. Just make sure its in your IEP
The Mama Maven says
Thanks Laurie, our school nurse is amazing, but I am not sure if she knows glucagon. I don’t think I could even give it to him — that’s my biggest fear. I’ll check out the link you provided. Thank you for being a long time reader and your support.