Today sure doesn’t feel like Independence Day. Independence Day represents freedom, yet I’m feeling much of the opposite. Diabetes has limited us, trapped us, in a way. No longer can we be spontaneous and grab whatever food is in the fridge and run to the park for lunch. No longer can we maybe skip a meal because we are running ourselves crazy at the zoo or somewhere else. No longer can I leave the house without a cooler full of food, insulin and syringes. Again, overwhelming. Todd took the rest of the kids last night to Great Grandma Startup’s to sleep there, run the Freedom Run today, watch the parade and go to the BBQ. I stayed home with you. It was the first year I missed this tradition. I don’t blame you. I really don’t. It’s all a part of how I’m processing and working through this grieving process. In fact, I still believe it was the right decision.
When I say “grieving process” it is because this is a very real loss. A loss of the childhood that we once thought you’d have. A loss of spontaneity, of time, of a future that you may have wanted. Our nurse told us that you can never be a truck driver, a commercial pilot or serve in the military. The pain I feel is a real loss, though one difficult to explain.
We got home from the hospital last night and I just don’t feel ready to be away from home with you yet, when I’m still trying to get my feet under me. What do I do when you see a popsicle at the BBQ that you want and we’ve already dosed you for your lunch? What do I do if you want to graze on the assortment of cookies and other desserts laid out on the tables? Or if your cousin has licorice at the parade and can share with everyone but you? How do I explain that to a 2 year old without looking like a big, mean Mommy!? Yes, it is better that I stayed home with you today. You’ve been my little buddy and Maiya has sure missed you so you 2 have spent quality time. You haven’t complained at all.
Grandma Ehlert slept here last night, helped me with your middle-of-the-night blood check, your carb counting for breakfast and double-checked my math and insulin draws. She also brought a truckload of food that Grandpa picked up at Costco, things your Uncle Spencer (also diabetic) always liked to snack on, small 15 carb snacks. Those kinds of things are going to be good to have around. I got rather emotional when I saw how much food she brought in. With cupboards that always seem bare, it was nice to see them full for once. She also cleaned out a cupboard and set up a “diabetic station” for all your monitors, syringes, alcohol wipes, strips and journals. Ironically this station takes place of our once candy cupboard. Grandma started pulling everything out, throwing things away and Kendra asked, “Well, where will our candy go?” Grandma just chuckled. It will be a good change. A necessary change; one I don’t mind.
Your levels are still in the 200 range today and your target range is 100-200. Your ratio right now is for every 20 carbs you eat, I’m to give you .5 units of insulin and for every 100 over 200 after tested, you get another .5 units of insulin. We gave you 2.5 units of Lantus last night. We’ll call the doctor in about an hour and find out if he wants us to change the ratios again. At the hospital, your ratio was every 30 carb: ½ unit. You get 2 free 15 carb snacks. Any snack above 15 and I will need to give you more insulin.
I feel so blessed to be surrounded by a great support system. Both Grandmas will be very valuable. Grandma Ehlert did this entire process with Spencer and knows so much of what I’m going through and has been so helpful. Grandma Hillam is the juvenile diabetes educator at Primary Children’s Hospital. So, although she can’t know what I’m dealing with on a daily basis, she has been teaching parents and kids about diabetes for most of her life. I also have at least 3 families in my ward with a diabetic. In fact, I called MaryEllen Solomon over for our lunchtime insulin draw today to have her double check my numbers and hold you down. Her son on an LDS mission has diabetes and was diagnosed at age 11. Not all parents can go home to the situation that I’ve been blessed with. I’m not sure how I’d get along without them.
I’ve heard people tell me that it is a good thing you are so young because you will never know any different, that this will be the only life you know. I’m not sure that gives me much comfort, to be honest. Other worries I have are: never allowing you to feel like you are “broken” or that this is an illness. I don’t ever want you to feel like you are limited in your capabilities. I hope you will always be a confident boy and I feel the responsibility to instill that in you at a young age. I have a hunch that your spirit came prepared for the challenges that lie ahead because, dang, you are one strong spirit! You touch every life you come in contact with. You always have. I don’t know a person who has met you that has not been drawn to you. Seriously. I also don’t ever want your siblings to feel like I’m favoring you or treating you differently. I don’t want YOU to feel like I’m favoring you. This new mountain to climb will be climbed as a family, together. All our eating schedules and what we eat will be changing. A diabetic diet is a healthy diet and can only help the rest of the family.
Dr. Donaldson told me a story that has left an impression. It choked me up as he told me. A mother relayed a story about a time when she was introducing her 4-yr old son (diagnosed at 2) to someone and that he was a diabetic. The son quickly said, “I’m still a normal boy, Mom! I just have diabetes.” So that is what I pray for you. That you will always feel like a normal boy and you will never, ever feel limited.