I'm Eric's mom. I'm a registered nurse who is very well respected in my chosen field of neonatal nursing. Eric is my four-year-old son. He was born two months premature but had a very uncomplicated neonatal course. Life was good. So good, in fact, that I decided I was in a rut. When Eric was 15 months old, I dropped from full time to part time at my job and went back to school to become a Neonatal Nurse Practitioner. Life has never been the same.
Eric began getting sick at 18 months old, three pneumonias, coxsackie virus with a temp of over 106F, multiple viruses with uticaria, chicken pox with scarlet fever at the same time. Things become so bad that I began to believe that Eric was autistic, he quit talking around 20 months old and he was chronically constipated. My pediatrician blamed everything on being "viral" and having a mom who was a nurse.
I took him to New Orleans to a gastroenterologist to help with the constipation and they decided to sweat him for cystic fibrosis. I just wanted some simple labs. I "knew" Eric had "sugar problems." Gut instinct. It took me a week to figure out what kind. Even then I was too chicken to take him to see the pediatrician. I was tired of being blown off. I made my accountant husband take him and told him what to say. I, being the good mom I was, went on to school that day. I got the 911 call that afternoon.
Eric had diabetes and was in DKA. He was on his way to New Orleans and I was to meet them there. The drive from Baton Rouge to New Orleans was hell. I never cried so much in my life. The resident at the hospital tried to comfort me, "Don't worry, this could just be temporary." Eric was admitted to the Hospital in New Orleans at about 10pm on a Monday. Tuesday we were taught everything we would need to know. I remembered nothing. I couldn't quit crying and felt very overwhelmed. My husband's boss wouldn't even let him off of work to attend the class. He attended a half-day on Wednesday.
People kept (and still do) telling how lucky I was to be a nurse. Well, the babies I care for do not have diabetes. I was as green as the next mom. We were discharged bright and early on Thursday morning. I remember driving home afraid of my son and thinking I no longer knew how to care for him. I have never been a person to ask for help and so I felt very alienated. I really still do.
I want so much for Eric to have a normal life, not dictated by the rigors of diabetes. But more importantly, I want him not to feel cheated or different because he has diabetes. We try to down play as much of it as possible. This hasn't worked either. This Christmas, three close friends gave Eric and/or his brother candy for Christmas. I read and studied all about the clinical aspects of diabetes. I have an extensive lay and medical library about the subject. Eric doesn't remember not being diabetic. Even my seven-year-old can't remember when Eric didn't take shots.
But as most parents with a diabetic child know, it's hard. I'm scared about the future. Eric has significant antithyroid antibodies, a very high ANA (645), and anti-cardiolipin antibodies. I have systemic lupus, so he is fitting into a mixed autoimmune connective tissue disorder pattern. My seven-year-old has trouble understanding Eric's sugar ups and downs. I'm not really sure where I'm going with this, as much as venting. I am still, after almost three years, angry. Angry for not being Eric's advocate prior to his diagnosis, even when I knew something was wrong; and angry that he and we as a family have to go through this; and angry at the thought that my son may have complications later in life; and very scared and angry at the possibility that these complications could shorten his life.
Until a person lives with a child with diabetes, they can not fully understand the impact of the disease. It never goes away. We have learned to live with diabetes and often now go about our day in a "regular" way, just grab Eric's bag and go. But in the back of your mind, you're always watching. Eric will start kindergarten in the fall. I don't even want to go there. God, I wish I had my rut back.
Andrea receives e-mail at mgrishma@COMMUNIQUE.NET.
Original posting: 1 Feb 98
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