In the days at the hospital following our daughters diagnosis of Type 1 Diabetes, I googled furiously. I wanted to know everything. I drank from the fire hose. I needed control, I needed hope and peace and I needed someone to give it to me. I found an article written specifically from a Mom with a kid with type 1 to parents that we’re getting newly diagnosed with type 1 and I promised myself that one day I would write the same article.
While in the hospital, I wanted to keep our friends and family updated, so I was posting regularly on social media. Strangers reached out to me on Instagram after my post with hashtags, FB Groups invited me to join so I could message seasoned parents, or locals, and I felt so incredible to suddenly be part of the network of other people that were going through what I was going through.
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The first time I went to the pharmacy to pick up my daughters meds, I sobbed. I wandered around the grocery store completely lost – what were the good carbs? How many carbs are in carrots? What can she eat for breakfast? Ending at the pharmacy was the clincher. They piled up meters, monitors, test strips, syringes, vials, pens…it was a lot. It was so much more than I was prepared for. That’s when I broke down and the crying started. Then they told me the cost and I sobbed harder. I was under the impression that because we had insurance (good insurance!) we could cover this but I was so very wrong.
The next weeks and months were anxiety-filled and tiring. We had a 6 month old at the time who wasn’t a fan of sleeping all night and both my husband and I were sure we were going to overdose Stella with too much insulin and she would go low and die OR that she would just go low and die on her own. I have since learned that it is RARE to die from a low without any warning, especially in an otherwise healthy 5 year old. But we tested her manually before bedtime, again while she slept at 2 am and then again in the morning first thing (and all during the day as she wanted to eat). Our Pediatric Endocrinologist was very kind to actual set her targets slightly higher than perfectly ideal knowing we were suffering greatly from sleep-deprivation. I\’m so glad we had talked to her about our overall lifestyle and family situation and that she took that into account.
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During this time we leaned heavily on our friends and family and saw so many blessings because of letting them in. We had help and encouragement and small tender mercies from many because of it. I will never regret being so open on social media about everything we were facing – people truly came out of the woodwork to help us.
Everyone assumes (and yes, I specifically used the word assume because we all know where assuming gets you) that once someone is diagnosed with Type 1 they can never have sugar again. Type 1 is an auto-immune disease that has nothing to do with sugar and is the management of CARBS with insulin. Healthy eating ALWAYS helps every disease, but unfortunately isn’t the cure here or the cause. High-sugar items are definitely difficult to manage because the integrate quickly into the bloodstream and they are high in CARBS, but it doesn’t mean that they’re off limits! We were so lucky that our lifestyle had to change pretty minimally as far as diet was concerned. We had already given up cereal a long time ago, we’re not big soda or juice drinkers (we do love the occasional one though) and we love treats, but not all day long. It’s really those few things that seem the hardest to dose for and even so, it’s so doable. The biggest change we had to make was forcing Stella to group her meals and snacks together. She is a GRAZER and we still struggle with this today. This was especially difficult when we were managing her manually – she wanted to snack here and there all day which meant a shot for every little snack. Getting her to make a pile of food and telling her she can’t eat again for at least 2 hours really helped!
Six months into diagnosis we were finally approved for a CGM (continual glucose monitor) and we were over the moon with excitement. At the time a CGM meant only manually checking her blood glucose (poking her finger) twice a day instead of 8+ times a day. Today it doesn’t even require calibration, so on a normal day when all her devices are functional, she requires no pokes! If I could go back and do it all again, I would have pushed harder to get this device much sooner – some kids come home from the hospital already using one! While I\’m grateful to have an understanding of how to manage her manually, I don’t think checking her blood glucose manually for 6 months was necessary.
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With the new CGM came new costs and new questions to answer. We opted to get her a phone ($$) instead of the receiver (we wanted to be able to see on our phones what was going on when we weren’t with her), put her on our plan ($$) and pay for the dexcom ($$) which is covered by insurance, but still at a great cost. My husband took on every side free-lance work he could, and I started looking for a job outside our home beyond doing freelance. Here I had a much higher-maintenance child than ever before and much less time to learn/manage her disease because I needed to work more to afford her. My greatest advice now to anyone diagnosed with this disease is to figure out insurance right away. If you’re insurance doesn’t cover things well, switch jobs right away, don’t wait until you’re completely desolate and desperate. We refinanced our house to dig out of things only to realize these costs are for life and they only go up every year.
Soon after getting the CGM we were approved for a pump. We opted for the Omnipod because it’s the only cordless pump and we loved that idea for a 5 year old. The pump brought on higher costs but much better management and also gave us HUGE peace of mind sending her to school. It is so much easier to teach people how to punch numbers into a device for each meal than to ask them to draw up a syringe or twist a pen and trust that they do all of the math correctly. Using a pump also limits the possibilities – making it impossible to overdose her. Her pump is so nuanced it does different calculations for her carb counts based on what time of day it is – something we were never able to manage doing everything manually.
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(If you’re reading this and you don’t know about diabetes management, dosing looks like this example: for every 50 carbs of food, you might need 1 unit of insulin (this varies greatly between diabetics and even changes for my daughter depending on what meal she is eating/time of day. This can also change with seasons/levels of activity/hormone shifts/etc). Your doctor sends you home with a recommended carb count to start and then they navigate from there what works and what doesn’t. So if my daughter is 50/1 and wants to eat a banana and glass of milk (42 carbs) we should give her a little less than a unit of insulin, ideally 20 minutes before eating. You can quickly see how helpful it is to have a pump do this math and dose her with the exact micro dose instead of a close-enough dose of insulin. With a pump you only count the carbs, the pump does the rest of the math).
As her first year after diagnosis progressed I found myself going deeper and deeper into depression. I understood that things just happen, but I felt so victimized by all of this. All I wanted was to be able to raise my kids and instead I had to go work, at home and outside our home. I felt frantic and desperate all of the time and all of my relationships suffered because of it. I was sure that we were going to kill her and furious when people would say anything about it because they just didn’t understand. (People will say the dumbest things to you because they just don’t understand or they don’t know what to say). I worried endlessly that this would forever ruin her relationship with food, that we would never find a good routine or ease of life and how in the world could we ever send her into adulthood with the costs of this disease?
Year two progressed much the same, again with lots of desperate work, mostly at home now and still constantly worrying about the future, the present and how we were going to make it all work. One appointment her a1c would be perfect, the next it would be a little high. Each trip to the pharmacy a high or low – did I get the coupons correctly? It cost this much last time, how much will it cost this time? Do I need to switch pharmacies again? Why is our plan renewing in December instead of January? I took all of this personally even though I tried so hard not to. Each bad number was a sign that we were bad parents, not managing her perfectly and every high bill a sign we weren’t working hard enough to make enough money to afford our past lifestyle and her.
Don’t make the same mistakes I made. Memorize the phrase Correct and move on. It will keep you alive. Each number is not bad or good and isn’t a reflection of you as a person or parent, or a reflection of your kid. It’s not fair that my oldest can sneak treats but if Stella does, she gets caught every time. It’s hard for her to ask for insulin to cover every bite of food. Before diagnosis Stella was VERY independent and having to take steps backward was hard and still is. We’re educating her as much as she can handle so she feels like she’s part of managing her disease, but she’s 7 and she can’t do it all on her own yet.
I finally hit a wall last fall and went into counseling. I felt like our kid wasn’t dying, there were diseases SO much worse or higher maintenance than hers – we didn’t need counseling, we were tough. I needed counseling. I was fantasizing about dying, not even because I was necessarily suicidal, but because it just seemed like if I died I could get a break. I was so tired. I had developed an eye twitch in one eye and eczema over the other – comically leading me to being unable to see, unable to work and a sign of a body desperate for rest.
Counseling saved me. It helped me navigate back to living in the present moment, letting go of the past and not trying to look too far into the future. I made some adjustments to my work/life balance, to our budget and started meditating to help keep me on this path. For the first time since she was diagnosed, I\’m beginning to feel peace about managing this disease. It’s been 2 1/2 years and we’re all ready to stop mourning and just be ok already.
It’s not all doom and gloom – there are bright spots in this disease. Like all the hardships we\’ve endured, this has only built our family’s foundation a little stronger. When I meet another parent of a diabetic, we immediately exchange a look of knowing. When Stella sees another kid wearing a dexcom or finds out they have diabetes, they are an instant friend. Diabetes Camp (we\’ve only been to daycamp so far but sleep-away camp is coming!) has been a HUGE blessing and something I\’m so glad we got her involved in.
My favorite joke too is that the only good thing about diabetes is the free National Parks Pass. But seriously, you get a free lifetime National Parks Pass with type 1 and if there’s any perks to this disease, it’s that. We also signed up for a high-rewards credit card and while our bills for her disease are very high, so are the points we get back for paying for it. My husband and I just went on a mini-getaway completely paid for by credit card points and it was just wonderful.
I had to step away from many of the FB boards because they for me they were leading to more worry and anxiety. Now I spend limited time there as needed. I\’ve made a few friends on Instagram because of this disease and I\’m always so glad to see that they’re going through so many of the same struggles I am. When I feel up to it, I love searching the diabetes hashtags and offering some love and support to those that are newly going through diagnosis.
If you’re sitting in the hospital with a child newly diagnosed with Type 1 diabetes right now, I want to share my story with you so you can learn from me.
- Become friends with your diabetes educator and Endocrinologist. If they don’t fit great, find ones that will. You\’ll all be in this together and you want to feel like you can trust them 100%.
- Figure out the financial side of this as soon as possible. So much of our misery has come from desperation. I hope to get to a place where I don’t feel like our financial situation is completely defined by this disease.
- Get counseling sooner rather than later. Even if it’s the occasional check-up. Managing an expensive and chronic disease is hard.
- Don’t be afraid to advocate for getting devices sooner if you’re interested in devices. I wish I would have pushed harder to get her on a CGM sooner – it gave us our sleep back.
- Make sure the social media aspect of this is a positive in your life. If it’s not, don’t be afraid to step away.
- Remember – Correct and move on. Day in and day out.
I hope this post and list doesn’t overwhelm anyone – this disease is overwhelming enough. I want to be transparent. I want to be real about what the aftermath of diagnosis looks like. I want to be open about the hard things and how we\’ve navigated through them. Take it one at a time, maybe this month you get your finances organized and next month you hire a counselor. I just hope I can help save someone from some of the hard parts we\’ve gone through.
Have questions? I\’m an open book and always happy to help! Feel free to comment below or find me on social. ♥