When our daughter was first diagnosed with type one diabetes, we struggled to explain our new life to people in a way that they could understand. One of the analogies we came up with was it was like having a newborn again. For some reason, I’ve been thinking about that analogy again (maybe because we’ve had a good couple of nights so I can think again). The more I think about it the more the analogy works.
- They both require constant round the clock monitoring. When our daughter was a newborn, I had either her or her baby monitor beside me at all times. Now I have her blood glucose levels displayed in no less than 6 places around our home (one on my wrist). She wears a sensor that is continuously monitoring her glucose levels. It alarms to wake us in the night. Which brings me to…
- Like having a newborn, we don’t sleep. Before she got the continuous glucose monitor, we were checking her blood glucose by pricking her finger every three hours through the night. Now we have alarms to wake us when she needs care, similar to a crying newborn letting you know when it needs attention.
- I remember one of the hardest parts of having a newborn was the unpredictable interruptions. When a baby cries, you have to attend to it promptly. When diabetes needs attention, it demands immediate attention. One of my kids always had huge blowout diapers at the worst possible times. Now, you can bet that if we are running late, diabetes will demand attention.
- When my oldest daughter was a baby, every time I felt like I figured out her routine she changed. We were always in a state of flux because every stage was short lived. With diabetes as soon as I think I’ve figured out her basal rates, she will hit a growth spurt. The minute I get confident that I’ve figured out how to dose for pizza, something changes and it doesn’t work any more.
- Everyone was always giving me advice when my daughters were babies–”they will sleep better if you rub their back,” “they need to learn how to sleep without your help,” “you shouldn’t breastfeed or they will get too attached,” “if you don’t breastfeed you are setting them up for a life of failures.” Now, everyone has diabetes advice– “have you tried okra water?” “my uncle had diabetes and exercising more helped him,” “you shouldn’t give her that cupcake,” “you should give her whatever food she wants.” “My cat had diabetes and we had to put it down.” Often the advice is less than helpful.
- When my second daughter was born, I remember realizing how different every baby was. My first daughter would sleep best alone. My second daughter was in our bed until she three because that’s where she slept best. I’m learning that every kid with diabetes is unique in their needs. I’ve joined groups with other parents of kids with diabetes and am constantly amazed at what works for different kids–some do well on low carb diets, some thrive on one type of insulin or pump, some prefer shots, some are very insulin sensitive, and so on. There’s no one set rule book for kids with diabetes, just like there’s no one perfect way to care for a newborn.
- Leaving the hospital with a newborn was anxiety producing for me, especially with the first one. I was leaving all the people who knew more than me and who could help if there was an emergency. The drive home from the hospital after my daughter’s five day stay at her diagnosis produced the same feeling. We were happy to be out of the hospital, but so terrified. Were we prepared to handle this? What if we missed something in the education? I did not want to go without the support of the nurses and doctors, but we couldn’t live at the hospital.
- Diaper bags have a huge market because taking a newborn out requires stuff–diapers, burp cloths, extra outfits (for baby and parent), pacifiers, wipes, more diapers, an extra-extra outfit. I used to laugh that I had a six pound baby and a twenty pound diaper bag. Similarly, now anytime we take our toddler out now we have so much stuff: extra pump sites, insulin, glucagon, glucose tabs, juice boxes, alcohol wipes, syringes, lancets, a blood glucose meter, and more. We don’t leave the house without her diabetes bag.
- With a newborn, every illness is taken seriously–they have a fever? Call the doctor. Strange rash? Call the doctor. Throwing up? Call the doctor. Crying more than normal? Call the doctor. Diabetes is the same. No illness, no matter how minor, is “just a cold” or “a normal stomach bug.” My daughter complained of a stomach ache and I was on the phone with the doctor for 30 minutes going over the treatment plan. She once had a runny nose that messed with her insulin sensitivity so much I spent half the week on the phone with our nurse trying to figure out how to keep her safe.
- At first newborns with their constant demands can be overwhelming. Diabetes is the same. Unlike newborns, diabetes doesn’t grow up, but with education and experience it can become less overwhelming.