If you have a child with Type 1 diabetes, you understand this disease affects every member of the family. While our daughter, Allie Lou, may be the unlucky one to have this disease, it truly is a Family Diagnosis. The constant management of diabetes, the blood sugar checks, the alarms going off at all hours of the day, the ever-present “kit,” medical supplies strewn throughout our home are perfectly normal to our family. Our son, Patrick, was just over a year old when his big sister Allie Lou was diagnosed with Type 1 diabetes. It has been a part of his life for as long as he can remember. Because of this, I have always worried about him.
Would this attention to Allie Lou allow him to find his place in our family…and ultimately his place in the world? Would he feel ignored? Scared of the blood and needles so common in our home? Or perhaps jealous of all the attention his big sister receives?
Type 1 diabetes is a 24/7 job managing insulin dosing, food calculations and avoiding high blood sugar and low blood sugars that can result in seizures. While I try to look “cool as a cucumber” on the outside, inside I am constantly preoccupied – trying to figure out my next move in Allie Lou’s care. I am sure my kids sense this preoccupation on occasion, and then there are times when we are in an emergency situation and I must drop everything to attend to Allie Lou. Our priority must be the care and management of Allie Lou’s Type 1 diabetes. Despite this constant care and attention given to Allie Lou, I also know we need to prioritize and nurture Patrick as well.
Our little man Patrick is a tender and spirited boy. He has perfected four-year-old whining, fake crying and the oh-so-fun nonsensical thought process. While these behaviors can be exhausting (and sometimes hilarious!), I also know they are typical for his age. However, having a big sister with a chronic, life-threatening illness is certainly not typical. Neither is watching your parents inflict pain on her daily with pump changes, Continuous Glucose Monitor (CGM) insertions and blood sugar checks. I see the fear in his eyes that he wonders if this will become his reality, as well.
At times I used to try to shield Patrick from diabetes, and then one day it hit me that perhaps it could actually enhance his growth and development if he were involved and (quite honestly) sometimes inconvenienced, by this disease. I knew I had to be careful to not overload him with responsibility, but at the same time I felt that if he could participate in her care he may feel proud and gain confidence that he can care for “Sissy” just like we do. Obviously, I am not asking him to give her injections or check her blood sugar, but I do think he is of an age now where he can start to join the team in caring for Allie Lou.
Based on his young age (and garden-variety four-year- old behaviors mentioned above), I was curious to see how my new requests would go. To my complete shock and amazement, Patrick has never once winced when I ask for his help with Allie Lou’s care.
If we are in one room and Allie Lou’s supplies are at the other end of the house, I will ask him to get the kit. Even when he is heavily involved with his superhero imaginative play, Patrick will stop on a dime and dutifully go get her medical kit when asked. If I ask him to grab Allie Lou’s glucose tabs or a snack, he has never once complained. He happily obliges and moves along. Recently, he has been offering his hand and says “Sissy squeeze as tight as you can!” when I am changing her pump site or CGM monitor, knowing that these procedures are painful to her. Patrick will often carry her “kit” as we head out the door and he does not complain. When she has a low blood sugar, he knows her health and safety are the priority for that moment and he allows me to turn my attention to Allie Lou with zero fussing. I should mention that Patrick is very happy to dish out glucose tabs for low blood sugars, and equally as happy to pop one in his mouth. Yes- I do let him have one when Allie Lou requires a glucose tab. I figure it’s one of the perks of taking care of his big sister.
I have been scratching my head trying to figure out why Patrick has so easily adopted helping us with Allie Lou’s care. Part of me wonders if he feels some guilt (if four-year-olds are capable of this emotion?) that he is not the one with diabetes. Or perhaps, he feels like a “big boy” now that we trust him to carry her life-saving supply kit. Maybe Patrick knows how much time my husband and I put into her care and he wants to ease our burden as much as he can. I may never be able to pinpoint the reason for his willing participation and patience of this disease. But I do believe our Family Diagnosis has deepened his sense of compassion and responsibility. For now, I feel comfortable that Patrick has his “place” in our family. While he is still a spirited little four-year-old whose whining can make me want to pour a glass of wine before breakfast, he is more importantly a team player, compassionate supporter and best friend to his big sister, Allie Lou.