November is Diabetes Awareness Month. It's something that's a big deal in our home because my youngest daughter has Type 1 Diabetes. It also happens to be the month in which she was diagnosed in 2013. I've shared her story of diagnosis before and I didn't plan on writing a post this morning, but this was just on my heart and I wrote a lengthy tale on my personal Facebook page just for friends and family. Then after the fact I realized I had, in effect, written a blog post and it was something I should share with the rest of the world. So here is a part of our tale . . .
6 years. I feel weird saying "Happy Diaversary Ruthie" b/c that isn't happy. How about just "Diaversary Day"??
This picture seems innocent enough. A 10 year old little girl enjoying some treats towards the end of her sister's 15th birthday party. Little did we know how badly she needed insulin that moment and over the course of the next two weeks how much all of our lives were about to change.
This picture was taken on Saturday, November 16th. When she threw up later that night I wasn't overly concerned. I mean it was a party and we had a LOT of food. I figured she had just overeaten and thrown up. No big deal.
Then a friend who was staying the night threw up later. And some mom-horror started to kick in thinking, "Oh my goodness we've got a stomach bug going around here and we just had 30 people over!!" I was certain everyone at that party was about to be super sick. But nope, just those two.
The friend turned out to be fine. Ruthie was not.
She felt a bit better after throwing up. She wasn't throwing up constantly like with a typical stomach bug. She would throw up just a little bit each day, usually later in the day. She ended up staying home the entire next week. I didn't take her to the doctor until Friday because it wasn't until the later part of the week that I really started to feel something just wasn't right. Up until then she would seem like she was feeling better at times and then she would just spend most of the day on the couch watching The Weather Channel (she's my little weather nerd). She was extremely lethargic.
I'm not the type of mom to rush to the doctor for every little thing. I know when things are viral you just have to let them run their course and treat the symptoms. I didn't think there was anything that could really help her. We just needed time for her to get better. I was wrong.
She needed insulin.
We played this game all week of being sort of ok during the day, just no energy. Then at night she would throw up. So I would think she was getting better. And then not. And back and forth.
By Thursday when I realized she was absolutely NOT getting better and was stuck in this weird rut of just being very lethargic and not actually getting better I was getting very concerned. I couldn't take her to the doctor b/c our doc closes at noon on Thursdays. I called Friday morning. November 22nd.
Took her to the doc. I had been thinking maybe she had mono b/c of the lethargy. That was what our nurse practitioner had been thinking as well. But she didn't have swollen lymph nodes. He said she was perplexing.
He wanted to take some blood to run some tests. She was horrified at the idea of that. He said well then he needed her to pee in a cup. He needed SOMETHING. The urine sample seemed to be the lesser of two evils so she acquiesced. There was sugar in her urine. He said ok, he really needs to do a finger stick and check her blood glucose.
It was 357.
He told me and I said I don't know what that means. He said it should be in the 80s. I said oh.
That's not horrifyingly high for someone about to be diagnosed with Type 1 Diabetes. But high. Certainly high for someone who hadn't kept down much food in a week. Her body couldn't process it. Later the nurse practitioner told me after eating all that food Saturday night he wouldn't have been surprised if her blood sugar was in the 800s. Looking back on it knowing what I know now I agree with him and I think 357 was a low number. We caught a glimpse of her low which was dangerously high.
She was a little overweight at the time and at first he was thinking she most likely had Type 2 Diabetes and sent me home with directions to cut out carbs and to go fill this prescription. I felt lost and bewildered and no longer capable of taking care of my child. I got into the car and called my best friend and just bawled. I didn't even know what groceries to get. I didn't know what my kid could even eat. I felt completely helpless. My friend (being the amazing rational person she is) said don't worry about groceries I got that. She said go fill the prescription and go home and I'll meet you there. On the way home we stopped by Sonic and I got Ruthie a chicken sandwich, but told her she could only eat the chicken. Then she was crying. It was kicking in for her that something was very wrong.
My friend went to buy groceries (knowing what to actually get!!) and met me at my house. By that time I had received a call from our doctor's office.
What I didn't know is that when we left the doctor, they were still working on it. They had gotten in touch with Arkansas Children's Hospital.
I got a phone call saying we needed to go to Children's right now. They had spoken with the endocrinologist on call and he was expecting us. Just go to the ER and they would take care of us. I was to stop by our doctor first and pick up some things to take with us (labs or papers or I don't even know what).
When I went to the doctor to pick this stuff up a couple of things happened. They took Ruthie into the office where one of the ladies talked to her. Her son had Type 1 Diabetes. She was so reassuring to her. Our APN pulled me back into the break room and said he thought it was actually Type 1 Diabetes. Again I said I don't know what that means. All I knew was that diabetes had something to do with insulin. Other than that I was completely ignorant.
We made the trek to ACH. After the ER, she was in Intermediate Care for awhile. Then moved to a room. We were there several days. We weren't sure if we were going to be able to come home for Thanksgiving.
After all the training I wasn't sure I WANTED to come home. These people knew how to take care of my baby and now I had no clue! I was absolutely terrified to take her home. Far more terrified than I had been taking babies home from the hospital.
Some friends connected us with others who had been through this. Some friends had been through it themselves. All of a sudden I knew about people I had known for many, many years who had Type 1 and I had had no clue. Now we were part of a special club. We didn't want to be! But we had no choice!
Those first days were hard. The first weeks were hard. The first months were hard. The first years were hard. It's still hard.
But the difficulty changes over time. At first it was figure out what the heck we are doing and don't die. Now it's keep doing what you're doing, don't become complacent, don't get lazy, keep doing all the things you know to do, and say a prayer and keep your fingers crossed. And don't die.
We have had good days and bad days. Some very bad days. Nights with no sleep. Desperate attempts to stay out of the hospital and handle things at home. One misstep in that regard and a stay in the hospital anyway.
But what did I get out of it? I got a new child. My previous child was timid and liked to stay in her comfort zone.
My new child, over time, became excruciatingly brave. She wanted to try sports she had never shown interest in before. She wanted to play softball. She told me I didn't have to come to her practices and I didn't even have to come to her games. That Miss Amanda (her school nurse) would be there and would take care of her. I said ok if you really want to try we will try. And yes, I was at her practices and games. lol She fell in love with softball.
So later she said I really want to try basketball. I said are you NUTS?! All that running and drills??? She tried basketball. She was terrible. The rare chances she got on the court she was like a lost puppy. Her coach hadn't the heart to hardly yell at her! He got it. His wife has Type 1. She played one full year of basketball. And when I say played I mean she rode that bench like a champ and looked so pretty while doing it. She made it through maybe half of the practices? Constantly dealing with low blood sugar. But half of the practices was still really great exercise. And she did it on her own or with the help of her friends. I wasn't there hounding her every second of it. She was gaining some independence.
The following year she practiced the entire summer, then early in the school year asked if she could switch to manager. I wasn't a fan, but that's what we did. And I went to her games and watched her be the prettiest most helpful manager out there. She enjoyed helping the team out and being with her friends. She also had grown to love the coach. So had I.
Then she wanted to try golf! Her sister played and so we said ok. We tried it out with her not having me along. That didn't work out, so I instantly became the "golf mom". I have since been to probably every single practice and every match. For three years. The first two years she did it just for fun. Then she wanted to take it more seriously. By chance, we met a coach who wanted to work with her. After over a year he's become like family. She worked hard all through the off season. Then this past golf season, while she started the season near the bottom of the totem pole I'll be darned if that kid didn't fight her way through the season and performed very well in adverse conditions (RAIN and a wet course) at District and EARNED herself a place playing at state. I was so proud.
She had decided not to cheer during junior high. I thought she was finished with that part of her life. Well, at the very last minute she decided to try out for her sophomore year knowing if she made the squad she would have one year to cheer together with one of her sisters who would be a senior. They both cheered one gloriously fun year together and it just made my heart smile.
She has dealt with a throwing injury from softball that has never fully healed (we believe partly b/c of Type 1). She had to quit ball. She also had to quit band (trombone) b/c of that. She remained in cheer and golf b/c they irritated it the least. However, she decided she wanted back in band. She ended up in pit and now instead of trying back with trombone she has embraced the percussion life. During marching season she learned to play the synthesizer and "played organ on the sidelines". I figured she'd play triangle all concert season, but that little fighter learned to do a proper drum roll this week.
I share all these stories b/c I just don't know how much of this would have happened if she hadn't been diagnosed with Type 1 Diabetes. It somehow gave her a desire to prove to herself and to the world that she COULD do all of these things. She learned to TRY.
With all of the things that T1D has stolen from us, I just feel this silver lining . . .some of the things it has given us are gifts. We have found our own strength in ways we just didn't know were in us.
I don't know what the future holds. We will have good days and bad days. That's always something we can count on.
Yesterday, she was informed she was selected as a junior maid for Color's Day. Would she have come out of her shell enough to have had that happen without Type 1? I will never know.
I look forward to seeing what the future holds. I'm constantly amazed by and thankful for technology. It makes our lives better and easier. But I still hope for a cure.
I have a fundraiser set up for my favorite researcher. If you feel inclined to give, please do.
I can hardly imagine a world without Type 1, but what a wonderful place it would be. Until then, we will keep fighting and I suspect continue to find hidden strengths in our midst.
If you have played any part in our journey, I thank you. Friends and family and our medical team and coaches, teachers, nurses. All of you mean so much to us. Thank you for making our world better.
Ruthie, thank you for being so amazing. I love you, honey.
Here is a link to my fundraiser page:
Faustman Lab at Massachusetts General Hospital
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