How this journey began....
It was August of 2013 - my daughter was at her dad’s for the summer. I was so excited to see her, I arrived at the airport hours early. I staked out a spot right where I’d see her coming up the ramp and out the gate. But then she came, and I almost didn’t recognize her. She lost almost 40 lbs during that summer. She had gone through a huge growth spurt too. At first I didn’t think the weight loss was unhealthy per se, but figured with the increase in height she just thinned out.
She had been to camp and to spend six weeks with her dad. She had two weeks left before school started and she was enrolled in an intensive musical production for those two weeks which she had been looking forward to all summer. That first week, she came back tired and worn out and was drinking lots of water. It was summer, so it was hot and she was doing intense dance routines. When that second week started though, I knew it wasn’t right. She was sick. But with what? She was thirsty. Always. She was drinking water by the gallons. And peeing every five minutes.
Thats when I googled. (I know - NEVER google medical diagnoses-my first ‘fail’ in the process) it was right there in glaring, bolded letters - type 1 diabetes. She had all the symptoms and some we didn’t pick up as symptoms. From what I was reading I knew that she would be admitted to the hospital as soon as we went to the doctor.
But we didn't rush to the doctor. We planned, mostly mentally, for a hospital stay. It would be her first time being admitted to a hospital. Knowing she was sick and had been for quite some time we contemplated whats a few more days…for my daughter, the social value of the musical production she was a part of, was instrumental to her mental and emotional health. Therefore, we decided to delay the doctor a little bit and finish the play. Looking back it probably was not the best decision, but she had the time of her life at the cast party after the last show. That one good moment helped influence a more positive embarkment on the t1d diagnosis. I honestly think that if she had left the musical without finishing that she would have gone into the diagnosis with more resentment and anger.
Instead it was loss and grief.
Loss of life as she knew it. Grief of her pancreas that died in her stomach.
She was deprived of food and drink for almost 48 hours after we went to the doctor, and despite her doctor calling the hospital to admit her, we still sat in the emergency department for about six hours. She only spent one night in the hospital and then we were discharged to the specialists, where we spent the next three days. That night in the hospital, I don’t think I even attempted to sleep. I never unfolded the fold out bed but just sat in the chair that I pulled up right next to her. There was an alarm that went off about every 30 minutes that would wake her up and she would ask the nurse every time if she could eat yet. It would have been better if they just said, we’re never going to let you eat. Instead we held out hope every hour with our mouths salivating (I fasted too in an act of solidarity).
When we got to the clinic the next morning we were so excited when they told us to eat as soon as we asked for permission. The breakfast was cold by then, but we were so hungry it didn’t matter.
We are so grateful to have the exceptional care at our clinic and felt so welcomed and supported from day one.
They became a second family to us during those first couple of weeks. Lots of support and training. Lots of endless phone calls and repeating instructions. The best part is, years later, we still call and get the same level of support when we face new challenges.
After the initial t1d diagnosis, they tested for Celiac. It came back positive on 3 different occasions. The referral to the GI followed. Less than six months from her night in the hospital, she was back there (as a day patient) for the biopsy. No denying the celiac.
Her body rejected its own pancreas, and now we were told it would reject gluten too.
Not every moment since this all hit has been filled with grace, but she has displayed immense bravery, perseverance, inspiration, sophistication. I am so proud of the person she is and continues to grow to be.
She had been to camp and to spend six weeks with her dad. She had two weeks left before school started and she was enrolled in an intensive musical production for those two weeks which she had been looking forward to all summer. That first week, she came back tired and worn out and was drinking lots of water. It was summer, so it was hot and she was doing intense dance routines. When that second week started though, I knew it wasn’t right. She was sick. But with what? She was thirsty. Always. She was drinking water by the gallons. And peeing every five minutes.
Thats when I googled. (I know - NEVER google medical diagnoses-my first ‘fail’ in the process) it was right there in glaring, bolded letters - type 1 diabetes. She had all the symptoms and some we didn’t pick up as symptoms. From what I was reading I knew that she would be admitted to the hospital as soon as we went to the doctor.
But we didn't rush to the doctor. We planned, mostly mentally, for a hospital stay. It would be her first time being admitted to a hospital. Knowing she was sick and had been for quite some time we contemplated whats a few more days…for my daughter, the social value of the musical production she was a part of, was instrumental to her mental and emotional health. Therefore, we decided to delay the doctor a little bit and finish the play. Looking back it probably was not the best decision, but she had the time of her life at the cast party after the last show. That one good moment helped influence a more positive embarkment on the t1d diagnosis. I honestly think that if she had left the musical without finishing that she would have gone into the diagnosis with more resentment and anger.
Instead it was loss and grief.
Loss of life as she knew it. Grief of her pancreas that died in her stomach.
She was deprived of food and drink for almost 48 hours after we went to the doctor, and despite her doctor calling the hospital to admit her, we still sat in the emergency department for about six hours. She only spent one night in the hospital and then we were discharged to the specialists, where we spent the next three days. That night in the hospital, I don’t think I even attempted to sleep. I never unfolded the fold out bed but just sat in the chair that I pulled up right next to her. There was an alarm that went off about every 30 minutes that would wake her up and she would ask the nurse every time if she could eat yet. It would have been better if they just said, we’re never going to let you eat. Instead we held out hope every hour with our mouths salivating (I fasted too in an act of solidarity).
When we got to the clinic the next morning we were so excited when they told us to eat as soon as we asked for permission. The breakfast was cold by then, but we were so hungry it didn’t matter.
We are so grateful to have the exceptional care at our clinic and felt so welcomed and supported from day one.
They became a second family to us during those first couple of weeks. Lots of support and training. Lots of endless phone calls and repeating instructions. The best part is, years later, we still call and get the same level of support when we face new challenges.
After the initial t1d diagnosis, they tested for Celiac. It came back positive on 3 different occasions. The referral to the GI followed. Less than six months from her night in the hospital, she was back there (as a day patient) for the biopsy. No denying the celiac.
Her body rejected its own pancreas, and now we were told it would reject gluten too.
Not every moment since this all hit has been filled with grace, but she has displayed immense bravery, perseverance, inspiration, sophistication. I am so proud of the person she is and continues to grow to be.