Hallie describes her blog as “the window into the world of one family living and loving with type 1 diabetes.” Read about Hallie and her daughter Sweetpea and then visit her at The Princess and the Pump.
I’d like to introduce you to Hallie of The Princess and the Pump.
Tell me something about your child.
Sweetpea is a very outgoing, happy 4 year old girl. I often say she’s small but mighty! She has personality plus! She is a very happy child who sings and skips her way through life. She is an extremely verbal child. She talks A LOT, makes up her own songs, and often comes out with some phrase or idea that surprises us. She loves reading, learning, and playing with friends. She is very independent and insists on doing things on her own!
How old was your child when diagnosed?
Sweetpea was diagnosed on April 27, 2009 – just weeks after turning 3.
How was your child diagnosed?
The first symptoms we noticed were increased thirst and urination. She started going through her diaper at night. She had NEVER done this before. She always seemed thirsty. But it went in spurts – and as soon I would be certain that it was a problem (and even then I knew the symptoms of diabetes and was worried about it), it would get better. We were potty training at the time and she was doing so well. But then she started having accidents. The big clue was not that all this was happening – because it CAN be normal – but that it was so different for her.
We started seeing a lot of irritability. She would fall apart over the littlest things and be inconsolable. Again, so different from what she was usually like. We saw weight loss. She lost 4 pounds in a couple of weeks; that is A LOT when you only weigh 25 pounds!
Sweetpea was diagnosed in the spring. All winter long she battled one thing after another: pink eye, scarlet fever, a few rounds of the stomach flu, a weird infection that was feared to a blood infection but turned out to be ‘just a virus’, and all the normal colds and coughs that go with the season.
Right before diagnosis, she was very lethargic and began throwing up. This was just the excuse I needed to take her to the doctor and ask about the other symptoms. As soon as I saw her weight loss, I just KNEW. I had known all along but kept hoping it wasn’t that, hoping that I was just worried over nothing. After listing her symptoms and my concern about diabetes, her doctor thought it was probably the flu, but he said they’d do a blood test to see because it was so easy. Unfortunately, I was right.
How has your child’s life changed since diagnosis?
It’s hard to say how Sweetpea’s life has changed. Being diagnosed so young, her life now would have been very different than it was a year ago regardless. That being said, the maintenance of diabetes does affect her. She’s gotten used to checking her BG many, many times a day. She knows she can’t just go to the pantry and get food or eat whatever might be lying around at a friend’s house.
All of her babies have diabetes. She plays treating their low blood sugar, changing their sites and checking their blood sugar. When she plays kitchen or restaurant, she often talks about how many carbs are in the food. She’s been known to ask us if we think her carb ratio needs changed. She uses words like bolus, carb counts, insulin, etc. in normal conversation. That’s probably not “normal,” right?!? But it’s just part of her now. It never seems to get her down much. She can’t really remember life BEFORE.
How has your family’s life changed since diagnosis?
Honestly, it’s kind of hard to remember OUR life before! We definitely don’t sleep as much. Jason and I take turns doing night checks so we only get to sleep through the night every other night. We were always fairly organized people, so managing all the supplies, keeping track of EVERYTHING she eats, all her BG numbers and doses is definitely more work, but not that big of a deal.
We don’t go out for “date nights” as much. That tends to be the rare occurrence. We had to quit our couples Bible study because we can’t just leave her with a sitter or even leave her with good friends and family – because most don’t know how to take care of her.
We speak a new language now – diabetesonese!
If I’m being totally honest, I also have to say that I have a constant level of worry: about what her numbers are doing, what changes need to be made, is she going low, how to treat it, what kinds of foods work well together to hold blood sugar steady, will she tell if she feels low or high, is she okay when she’s not with me…? I worry about her future now. I never did that before. At least not in the same way.
However, I also think that we are a closer family. I think there is strength that comes when you are tested and you are working through it. I think I notice the small things more, I appreciate the good days more, and I’m able to see what REALLY matters much more clearly than before.
How has connecting online helped you cope with diabetes?
Connecting online has been a wonderful surprise! I started a blog to keep family and friends up to date. Through it, I have met some of the most amazing people! Although many of us have never met, I consider them to be true friends. They are my D family! The support I have found is amazing. I’m sure that I would not know as much about diabetes and how to handle it or be as far along in our journey are we are if I had not found the DOC!
How do you manage diabetes?
Sweetpea has an Animas PING insulin pump (pink, of course). We are totally in love with the pump! She hated shots; she cried and fought each one. We REALLY needed the tiny doses that the pump offers. We feel that we are able to control her diabetes better and we KNOW that she is much happier using a pump! We count carbs and write every. single. thing. in her logbook! We check blood sugar around 10 times a day. It just depends on the day – sometimes more, sometimes less. We change her pump site every 3 days.
What would you tell parents of a newly diagnosed child?
First, I would tell newly diagnosed families to seek out support. Whether it’s online, through your local JDRF chapter or through people you know with the disease, the support of people who “get it” is priceless.
I would say that it’s okay to feel whatever you’re feeling and it’s okay to fall apart. I think we have all been through that. Don’t let anyone ever make you feel like it’s “just diabetes” and that you should not be feeling sadness or anger or grief. It’s not “just diabetes.” It so much more than that.
I would also say that it DOES get better and it DOES get easier. Not easy by any stretch of the imagination, but things won’t always be as tense as they are right after diagnosis. You will eventually learn how your child’s body works and you will be able to make lots of good decisions about his/her care. Not that high or low numbers don’t happen, they do! But eventually you will have a lot more experience to fall back on when it does. So it won’t feel (as much) like a failure or that you did something wrong. At least for me, that has gotten better!
What do you know now that you wish you had known at diagnosis?
I wish I had known that the road through the sadness and grief we feel when our children are diagnosed is not a straight one. And it’s not a short one.
I guess I thought that one day I’d wake up and just….be over it.
And now I know that isn’t going to happen. There’s not a straight line from point A to point B. I still have days where it hits me like a ton of bricks. When I feel like all the air has left my body. Days, moments where I can NOT believe this is our life and that it’s not going away. Days and moments of extreme sadness. But, those days are a lot fewer and further between now. Now I know that they will always be there. Just not as often.
I wish I had known that she would not magically “get under control” and stay there. Right after diagnosis, people would ask me if her numbers were stable yet. Oh, how I HATE that question. Because the answer is NO. If only it worked that way! We may have stable days or even weeks, if we’re lucky. But it never goes away. There is never a time we don’t have to think about it. Because weird numbers happen. That’s just the D life. You learn to treat them and move on. And I’ve learned to be very thankful for those good days when we have them.
I also wish I’d found the DOC right away. It’s such a blessing to have others who understand and really empathize with you!
Meet other D-Moms and D-Dads each Monday.