We're past our first month now. N was diagnosed in the wee hours of the morning on December 9th. In some ways nothing has really changed and yet so much has changed. We came home with our Pink Panther book and our new information and tried to create a new normalcy in our lives but some old information does get in the way.
When we were at Children's Hospital with our new diagnosis trying to soak in all the information we would need to take the best care of N, we were filled with the lessons we were learning and our thirty-forty years of life and stories and backstories of what we had known of diabetes. I have a colleague that has type one diabetes but we never really talked about it. In my twenties I was married to a man with type one diabetes and I remember he had rules he was following and little vials of insulin lived in our butter drawer in the fridge but I was young and he was guarded so I never learned much about it.
We were assured that our son can do anything he did before and he can eat anything he wants. They tell you that, and maybe they really truly mean it, but it is difficult when there is a number attached to those food choices. Higher carbs equals a higher number to dial on that insulin pen and as a parent I can't help but feeling sometimes that the number reflects my modeling of less than stellar meal planning and diet. Before diabetes we were a family that liked fast food and take out. We ate hamburgers and french fries. When I felt like the family could use some bonding time I often used food to bring us together by baking cookies or making brownies or taking us all out for ice cream. My kids grazed all day, open kitchen. We usually ate dinner together but often I made multiple mini-meals catering to each person's preferences (not surprisingly I did not love cooking).
Our first few weeks after diagnosis I found myself thinking "he can't eat that, look at all those carbs." When I'd dial more than five units of insulin into his pen I'd think "we can't do this meal again." I'd heard our team of experts talking about food and how to not create eating and food issues for our children with T1D but it was hard to keep it in my head. We like a popular take n bake pizza place. We looked up the carbs and decided a splurge would be good for him to feel like not everything was changing. Before diagnosis he was a picky eater who grazed all day long and now we were having him on a regular meal schedule and scheduled snack times. I had found his appetite was different maybe because of the schedule but probably because the insulin we were giving was allowing his body to use his food the way it should. We figured he'd eat two slices of pizza, he usually just ate one. That night he ate four slices of pizza plus his fruit (no veggies). Double the carbs we had covered for! When he reached for that third slice I was panicking inside "do I tell him no? do we have to give him more insulin? what should I do?" My hubby told me I handled it fine and N never realized I was worrying. After he doubled his meal we did decide he had to have additional insulin because each slice of that pizza was 25g of carbs and we'd covered for 50 when we needed to cover 100!!! That number and those insulin doses caused me stress and uncertainty.
My coworker's daughter was diagnosed T1 a year and a half before our son. She struggled with it at first but over time it has become a part of her everyday life and she seems to be handling it all so well. I'm so fortunate that she has traveled this road ahead of me as she is now a great resource and a great comfort when I'm uncertain and confused. I'm definitely not afraid to cry in front of her. After I'd been home for a few weeks she came over and we shared some of our stories. Not surprisingly, our reaction to the diagnosis of each of our children was filtered through our previous experiences and what we had known before and what we were learning now. I told her about the pizza and she laughed. Her family likes pizza too. Her daughter likes chocolate muffins and chocolate milk. Both our kids like treats and gummy fruit and things that have higher carbs.
As the days and weeks have gone by I am happy to say that I'm getting more comfortable with our numbers and my role in providing N with nutritious options. We are still a family that likes hamburgers and fries, pizza, and take out but we try to make smart substitutions when we can. We were given targets for the number of carbs N should have at each of his meal and snack times and we try to stay in those ranges without presenting entire meals he won't touch. We substitute thin crust pizza from our favorite place instead of the regular crust and he still eats four slices but with the thinner crust it is a lower carb (still our highest carb meal each week though).
I'm also changing the way we approach our main meal. No longer am I the short order cook of the family. I make a meal and try to ensure there is one food that each person will eat as part of that. Thankfully my teenager's tastes have really branched out over the years and he is willing to give just about anything a try. As for N, he prefers known foods and for his foods to be pure/separate. He doesn't like casseroles or mixed foods. We put a veggie tray, salad, or vegetable on the table for every meal but, under our care team's advice, we don't force anyone to eat anything. We just make sure healthy options are being served and people are modeling eating them. Tonight we are about to have burgers, fries, acorn squash, veggie tray, and lemonade for dinner. I can't say I've started LOVING cooking but I am starting to gain confidence in dinner and I can see that I may even start enjoying cooking in the future. Hubby and I are now creating dinner together which offers more visiting and bonding for us too. There are definitely perks.
Those numbers are still always on my mind. I still worry about the numbers and if we are doing the right things. I worry that 40g of carbs from a burger is not the same as 40g of carbs from fruits and veggies. No one in my family seems to like any veggies (including me). We keep serving up healthy foods, the adults keep eating the healthy foods (even when we'd rather have cake), and we keep making small yet sustainable changes from white to wheat, from thick to thin, from fried to baked.
I'm hopeful that by the time N is an adult he will have some healthier habits with his eating. I'm noticing a lot of joy at our dinner table and it is nice to have ten minutes of family bonding time.
I'm not kidding, it takes 30-60 minutes to make food and they sit at that table for about ten minutes.
Things are different now but not so very different. There are some positives if I pay attention to them. We can do this!