My hero is 22 lbs. My hero wears tutus, thinks she is a mermaid, is an avid singer of "the wheels on the bus", and is scared of the dark. My hero is my 2 year old daughter Rylee.
Three weeks ago (a month after her 2nd birthday) Rylee was diagnosed with Juvenile Diabetes or Type 1 Diabetes. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly. It has NOTHING to do with diet or lifestyle. If you have T1D, your pancreas STOPS producing insulin—a hormone essential to turning food into energy. This means you must constantly monitor your blood-sugar level, inject or infuse insulin and carefully monitor your eating and activity every single day for the rest of your life. There is nothing you can do to prevent T1D. And—currently—there is no cure.
Rylee was visiting her Grandparents in North Carolina while my husband and I went away for a few days. Immediately upon returning back to NC we noticed that she was just not herself. Our normally happy, loving, active, silly girl was very lethargic, not smiling or laughing, her eyes were sunken in and she felt like a rag doll when I picked her up. My mother in law said she had a ferocious appetite while we were gone and was constantly asking for water in the last day and a half. When we went to change her into her PJ’s that night we noticed she was so thin all her chest bones were showing. We went to bed hoping that she would wake up better, but in the middle of the night she had saturated her diaper and all her clothes and was asking for more water. So the next morning when she could only take a few steps and then just would fall we decided to take her to the ER. Within an hour she was diagnosed with juvenile diabetes and her blood sugar was 490. She was in ketoacidosis. "Huh, what is that?" I had no clue. We learned quickly that it’s a life-threatening medical emergency where your blood becomes acidic. Without prompt treatment, ketoacidosis can lead to coma or death. We were immediately admitted to the Pediatric ICU where Rylee was given an IV of insulin. We were told that she would be closely monitored and that the first night was the most critical due to the possibility of her brain swelling! What?!! – All I could think was how can this be happening to my baby?? In the next 24 hours she received shots and medicine every hour on the hour. I have never seen a child so brave as she was poked and prodded repeatedly. In the next few days, as Rylee was getting stabilized, my husband and I met with a diabetes educator who gave us a crash course in what type 1 diabetes is, how to check her blood glucose levels and give her insulin shots. It was as if we were cramming for the hardest test of our life, except it wasn’t our life, it was for our two year old daughters life. SO many thoughts filled my mind – especially fear. "What was her life going to be like?" "How was I going to take care of her?" "Am I good enough to be her mom?" I knew nothing of this disease and now I responsible for managing it all day every day... and how I did with managing it would impact her life. My head was spinning. My husband and I took her home feeling like we were new parents with a new born baby, but this time we were armed with a back pack filled with medical supplies (needles. so.many.needles) and with the an information binder from the hospital. I have never been so afraid and overwhelmed in my whole life. On the other hand- I also felt guilty & lucky at the same time; Staying at the Pediatric ICU for four days makes you realize how fortunate you are to even be able to take your child home. It's a whole mix of emotions.
I say Rylee is my hero and it’s not simply because she is my daughter. She is my hero because while her father and I were nervous and frightened she handled this very adult situation with grace and strength that are rarely seen in the face of something so unknown. I can only wish to display all the traits that she shows us on a daily basis. She is able to find the good in everything.
When its time to prick her finger to test her blood sugar level she hands you a finger without hesitation and wants to use the opportunity to learn which finger is her “pinky” and which finger is her “thumb”. While most kids would cry getting a shot, she doesn’t even flinch. She just counts with us as the needle goes in and says “all done” and claps for herself when its over. She finds joy in everything, she doesn't quit- she doesn't get sad, she just keeps going. In the hospital when I felt like my safe, happy little world was falling apart... in my darkest hours I would watch her... and she reminded me that it wasn’t. She continued to laugh, talk about princesses, repeat all her friends names and gobble up her food. She was happy; she just wanted to play, give hugs, and have books read to her... she knows that those are the things that really matter. Life would go on….
It’s been 3 weeks since her diagnosis and we are still figuring everything out. Some days are good and some are not so good - Her sugar level is up and down. To put it simply managing this disease is like a game where you can’t have her blood sugar go to low... or to high. We are still trying to get it her insulin dose right with her doctors and know it will be a process. Some days are scarier than others; such as last week when her glucose level dropped really low after her nap, I ran into the kitchen and had to give her a juice box quickly in order to bring it up. At that moment her friend arrived for a playdate. As Rylee was sipping her juice she began to shake uncontrollably (a natural reaction to your sugar being low) and her speech was stuttered. Her 4 year old friend asked her mom why Rylee was shivering. I wanted to cry in that moment - but I held it in. My heart broke in a million pieces to see her like that, as for Rylee she just wanted to keep going... keep playing. She wasn’t scared at all. I am not going to lie - it is terrifying to think that your child could take a nap and not wake up, but Rylee teaches me not to live that way. She takes everything in stride and she is not afraid and so that in turn makes me not afraid. She amazes me everyday with how resilient and brave her little spirit is. It's a funny thing when you have a child you think about all the things you are going to teach her/him but really they are the one's that teach you.
Rylee gets her finger pricked 6 times a day and gets insulin shots 4 times a day by her father or myself. This is her new normal. This is our new normal. Despite this she is still the most gentle loving soul. There is light within her that shines so bright. This has not changed her a bit.
I know we have a long road ahead of us. This is just the beginning to our story.
FIRST NIGHT IN THE HOSPITAL
Starting to feel better.
and Rylee now... being Rylee! Still dancing!