I am scared. I am really scared....but please don't tell my family. I cannot be scared because I am now the expert. I am the family expert on Type 1 diabetes. I have never been an expert of anything before....but I have to be. My little boy is counting on me...and so is my family. But being an expert at something, doesn't mean you are not scared that you will make a mistake.
A little over two years ago my son, Brady, almost died. He didn't know how to chew his food because of the hypotonia he has. He swallowed some pieces of french toast sticks almost whole. The pieces got stuck and cut off his airway. He turned grey... and then blue... and I thought I had lost my precious little boy. He was airlifted to Royal Oak Beaumont...I couldn't stop shaking the whole time...but by the time we were moved from the PICU to the Peds floor hours later...I knew things would be ok...eventually. It has taken me almost two years to feel ok. Almost two years to stop being scared. Almost two years to stop worrying every time I sat down to feed my son. For more than six months my husband Joe was the only one who could feed Brady. It was such a long road to feel safe again. It was such a long road to not feel scared when I was with Brady. But slowly....the fear faded, the shaking stopped and I was content and safe. I stopped being scared.
One week ago, I was back on the Peds floor at Royal Oak Beaumont. Brady was diagnosed with Type 1 diabetes. This time being in that hospital room with my little boy felt different. When we left that hospital room after Brady's choking incident, we were closing that chapter. The medical effects of that incident ended when we walked out of the hospital. The emotional effects from that traumatic day lasted several years. This time, the medical implications from this hospital stay were just beginning when we walked out those doors....the emotional effects had not even entered my mind. I couldn't let emotions play a part in this journey, because I have to be strong. I need to be the expert. I have to be the person my son turns, to take care of him...the person my family turns to explain this complicated disease...experts are not suppose to be scared. This week my husband, my rock during a crisis...usually the expert in our family....had to go to Traverse City to coach a Special Olympics team. This was a commitment he made to the special athletes of our community quite some time ago...long before Brady was hospitalized with Type 1 diabetes. Joe and I talked about whether or not he should go, but I assured him we would be fine and safe at home. I am, after all, the expert...a lifelong Type 1 diabetic. I had this under control. I would count Brady's carbohydrate intake, test his blood sugar, give him an insulin shot and everything would go back to the way it was a few days ago...before Brady became a 3 year old little boy living with Type 1 diabetes. But it was scary. Scary because I am not an expert on how my son feels inside his little body. I didn't know if his blood sugar was high and he felt tired and irritable or if his blood sugar was a scary low and he felt shaky and confused. Injecting insulin into your little one's leg, is so much more difficult than doing it to yourself. I know how I feel. I know the pain is so brief. Is it the same feeling for Brady? Is he scared and confused? He can't tell me...so I always seem to imagine the worst. I thought I had it all under control. I thought I was an expert. Instead I was scared again. Scared like I was those dark days when I couldn't feed my son for fear of him choking. Scared and unsure of myself as a mother, like I was when I sat and watched my husband feed my son, because I couldn't trust myself to do it alone.
But this is something completely different. I do know what Brady is feeling. I do know how to give insulin shots. I understand how the carbs and the insulin work together. I can educate my family about every in and out of Type 1 diabetes. I can take care of Brady. I can make it all ok. I can be his expert. These last few days I went from not sleeping at night, for fear Brady would have an insulin reaction and would need me, to teaching my seven year old daughter how to test Brady's blood sugar, so she would feel connected to everything happening to her brother. I have been the one my husband turns to for questions and support. This time, he can count on me. I also know it is ok to be scared. I know it will get easier. When I see how much progress my little boy has made in this one short week, I know that my "expertise" is helping. I know the fear will fade...and as I look into my son's beautiful bright eyes and watch that wide grin spread across his face...I know that it is ok to be scared, because we are on this journey together.