It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.
It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed. Everything continues to change. Relationships, outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.
Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids. There is no common ground anymore, ground where you can relate with what your other friends are going through. Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.
The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand. People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested. Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.
Extended family, old friends, new friends, there is so much to explain, all of the time, so much to be judged on by the unknowing eye. In an effort to remain protected, you disconnect. Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.
It’s refreshing when you surround yourself with those who have been through the dark tunnel you have. Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.
The reality is that having a child with Type 1 Diabetes, death is always shadowing you. Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked. Type 1 Diabetes, for all intents and purposes is a silent disease. One that isn’t visible, and one that shrouds the care that is necessary in mystery, but for those who live it.
As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be. That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed. We didn’t even understand what we needed to survive.
Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis. It takes some time to be OK with those who judge or wallow in the hurt of being left behind. After all, there is a bigger purpose here, a bigger calling. Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.