Have you ever met someone, and right away, felt such a connection that you just KNEW that you and this person were going to become great friends? That was the exact feeling I had when I met Rachel in 2008. We were both at the Q 97.9 radio station trying to win tickets to see, of all people, New Kids on The Block. Guess what? We won and we did it together!
One of the things that we immediately bonded over (aside from the boys from Beantown), was the fact that I had a son named Camron and she had a daughter, who was 2, named Camryn. Small world.
Rachel and I became more than just buddies; we are like family, so when she found out her daughter, her precious little girl, had Diabetes, my heart took a nosedive for my friend and her family.
I will not pretend to know what I don’t know about Diabetes, but I do know what this poor family has been through and how much they have survived as a family unit. I would love to tell their story, but I’ll let Rachel tell it in her own voice.
“Camryn was diagnosed at five years old with Type 1 Diabetes. It was a shock as we have no history of it in our family. Her blood sugar was over 500, when normal blood sugar is 100, and her A-1 C, which is the average of her blood sugar over the last three months, was over 11. The normal range is 6 to 7. Camryn was immediately hospitalized for 2 to 3 days at Barbara Bush Hospital where we would begin education on how to keep our child alive. While in the hospital, she was put on insulin to bring her blood sugar down and avoid something called DKA.
DKA is Diabetic Ketoacidosis -essentially, organ failure, because your blood sugar has been so high for so long that it’s starting to shut your other organs down. Camryn was not in DKA at her time of diagnosis, which is quite unusual as we caught it before she was in her crisis. Knock on wood, we’ve been very lucky and never had any further hospitalization or an experience with DKA. Type one diabetics are also monitored for thyroid condition and Celiac disease. Camryn has not had either of those. If she hadn’t developed Celiac by the time she was 13, she would not ever develop it, so we are out of the woods there. She will continue to be monitored for her thyroid for the rest of her life.
Many children with Type 1 diabetes also have other conditions. Diabetes is an endocrine issue. At the beginning of her diagnosis, Camryn was on a deluded insulin because she was only 38 pounds. We had to inject our child every time she ate and prick her finger repeatedly throughout the day in order to monitor her blood sugar level. Now Camryn wears a device called a CGM, or constant glucose monitor. It is about the size of a thumb drive and is adhered to her body wherever she would like to put it. It has a monofilament under the skin that monitors her blood sugar and sends it to her phone. She is also on an insulin pump which allows us to not have to carry around or almost ever use needles. The insulin pump is attached to a catheter port that gets changed every 72 hours and provides insulin based on preset numbers and ratios that are constantly being entered into the pump. These are tweaked overtime as her body changes to ensure she gets the right amount of insulin to process sugar. Her CGM device has to be changed every 10 days.
Diabetes works its way into your life in every aspect, many of which, they don’t even prepare you for upon diagnoses. The best piece of advice that we were given in the beginning was from the Endocrinologist who said, ‘do not try to control this condition; just manage it, and in a year, you will know more about diabetes and how it affects your child than I know about diabetes and how it affects your child”. No two diabetics are exactly alike!
One of the ways that Diabetes works its way into your life that you probably don’t think about is in oral healthcare. When the blood sugar is high in the body, all fluids in the body have a higher sugar content including saliva and sweat, therefore, diabetic children’s teeth are exposed to higher sugar concentration for longer periods of time resulting in issues with oral care, including cavities. Within six months of Camryn’s diagnosis, she had to be sedated and have eight cavities filled, two requiring root canals. Those root canals have created even more issues down the line that resulted in quite the oral health journey alongside our diabetes journey.
It took me six months from Camryn’s diagnosis to cry about it. I remember exactly when it happened. I was in the shower, and I just broke down. I’ve given it a lot of thought as to why I didn’t cry before that, and it’s because honestly, you’re in life saving mode.
Those first six months, my entire world was wrapped up in making sure that my child would live through the night. I was what they call mombie or mom zombie.
Before the CGM and pump came along, I or her father would be up for all hours of the night checking her blood sugar, making corrections, and making sure that her body responded the way it was supposed to. It’s just something, as a parent or caregiver of a child with a medical condition, you just do. People have said to me “I don’t know how you do it. If this was my kid, I couldn’t do it”. But you can and you will. You don’t even realize what you’re doing, you just do it because it’s your child; there’s nothing more.
Nowadays, we all sleep through the night unless there are highs and lows. Often, my daughter sleeps right through the alarms, which is a blessing, and a curse because when she was little, I thought, “this child will never know what is like to sleep through the night”. But now, as a teenager, and as with every teenager, she can sleep all day and all night and ignore any sort of alarm that any sort of equipment happens to be making. LOL. You have to find the humor where you can!
I’m very proud of my daughter and everything that she lives with which happens to be her normal, but that she sees is not the normal of everyone else around her. I can count on one hand how many times she has had a bad day thinking, “Why me?”! I hope she doesn’t keep her ‘why me’s’ to herself. I hope she realizes that everybody has something that they deal with; hers is just a little more obvious because there’s usually beeping involved from her medical devices.
Many children die from diabetes before they have been diagnosed. The before is completely preventable if people knew what signs to look for. We can focus on awareness. Signs of type one diabetes can mimic a minor illness, virus, or even misbehaving child. That’s right! Your five-year-old kid does not know that their blood sugar is high and that’s why they’re cranky, or that their blood sugar is low and that’s why they’re lethargic, or that their blood sugar is high and that’s why they’re super thirsty, or that their blood sugar has been high and that’s why they keep wetting the bed. Many of these issues can be chalked up to being naughty, adjusting to all day kindergarten, or any number of things. However, a very inexpensive finger sticks in a doctor’s office to check their blood sugar level can be early detection and SAVE LIVES!
Camryn is doing very well. She is currently a junior in high school, loves to perform in the drama program, works as a haunted house scarer every October, loves to ski, is an amazing artist, works at Starbucks, and hopes one day to become a traveling nurse!”
Something Rachel told me really stuck with me. She told me that when she walked into the Barbara Bush hospital for the very first time, she saw a young girl walking around with her medicine and she had no hair. Rachel thought to herself, as she was about to embark on the most difficult chapter of her life, "This will be hard, but at least, thankfully, Camryn doesn't have cancer." A different perspective. She went on to say that diabetes is not curable but is treatable and manageable.
I wanted to do a session highlight and share this story because I’m in awe of both Rachel and Camryn.
I’m so proud of Camryn, for her constant bravery, resilience, and the drive to overcome any and all obstacles that this chronic disease has put in front of her! Instead of solely focusing on having fun at the playground as a small child, she had to learn what signs to look for in order to alert her teachers if something felt off. This kind of thing is hard for adults to manage, so I can’t imagine the difficulty a child has with it. But this girl, this fierce, strong-willed young woman, is absolutely crushing it!
I am amazed by Rachel’s ability to be calm in a scary situation and be the rock her family needed. The level of strength it has taken to do what she has done every day to ensure her child lives to see another day is utterly admirable!
So, it didn’t surprise me at all when Camryn came into my studio for a session and did AHHMAZING!
She just has the look, the attitude, of someone who is going to make a difference in the world!
It’s your story Cam, and I’m just so grateful to not only witness it but also to be a part of it!
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