This Is Where We Go For Help

Six years later.

It’s been more than six years since Kelsey was diagnosed with Type 1 Diabetes. We’ve had a pretty good handle on the disease, we thought, for quite a while. Kelsey hit the ground running – she was checking her own blood sugar when she came home from the hospital, she understood how to count carbs and calculate insulin, she started administering her own injections not long after coming home. . .we thought we were ahead of the curve.

What we didn’t realize was the emotional toll this disease takes on a family and what it was doing to Kelsey. Sure, we knew that she struggled with thoughts of “why me” and “it’s not fair”. But we never realized to what extent she was suffering. Her medical team talked to us at her quarterly visits about how she was doing, physically, mentally, and emotionally. And they told us that many families see a therapist to help them deal with the effects of #T1D. I guess we thought we were past all that.

Boy, were we wrong.

Knowing what I know now, and we’re very early in the game, I would recommend every newly diagnosed #T1D patient and their family, see a therapist. In fact, if I were the medical team, I would probably require it. Especially when the patient is a child or adolescent. Expecting a child to fully understand what this disease means, how it changes their life, how it will always affect them, is too much.

The problem is, in my opinion, we get so wrapped up in the mechanics of the disease when we’re first diagnosed – we have to learn how to check blood sugar, how to read meters, how to inject insulin, how to count carbs, how to treat lows, how to treat highs, what to do on sick days, and on and on – that we forget to stop to take care of our emotions, what this disease makes you feel.

It’s easy to do, get wrapped up in the day-to-day business of this disease, because there is so much to learn, so much to do. And it’s never-ending. It truly is overwhelming. But, experience has now taught us something else new, we’ve learned something else about this disease, I know that we’ll never know it all, there’s too much, and we’re not physicians or scientists, but learn from our mistakes and take care of your emotions and make sure you’re taking care of your child’s (or #T1D loved one’s) emotions.

And, most of all, stay strong. Together we can #TurnType1IntoTypeNone #T1DLooksLikeMe #T1D

This Is Where You Get Bombarded

Get ready.

I’m going to be posting multiple times throughout each day during National Diabetes Awareness Month (November) to give you a look at what it’s like to live in a family with ‪#‎T1D‬. I’m going to *try* to post *every time* we do something disease-related (high blood sugars, changing pump sets, picking up prescriptions, the whole shebang!). Updates will initially be posted to My Facebook page which is linked to my Twitter profile so updates will be seen there, as well. I’ve already been posting some to try to get in the habit. ‪#‎GetReady‬ ‪#‎T1DLooksLikeMe‬ ‪#‎TurnType1IntoTypeNone‬

This is Where You Come In

Every single day is a new struggle. . .

It’s been almost six years since Kelsey was diagnosed with Type 1 Diabetes, also known as Juvenile Diabetes, or T1D for short. June 29, 2009. We’ve learned a lot in the past six years, plenty of things I wish we never had to learn.

There isn’t a day that goes by that I don’t wish, or another parent that has a child with T1D doesn’t wish, that it could be me. Instead of your beautiful baby. You can wrap yourself up in asking “Why?”, “What did she do to deserve this?”, “When is it going to get easier?” I struggle constantly with those questions, even so many years later.

I also struggle with, and frequently get overwhelmed by, how little I seem to know about this disease and how to treat it. Many days, I’ll treat a high or low or ketones and second-guess myself – maybe I should have waited longer to give more carbs, maybe I should have given a different kind of carbs, maybe I gave too much insulin, I should’ve rechecked her blood sugar sooner, or later . . . After this long, shouldn’t we be experts? Shouldn’t we have it all down?

But, T1D doesn’t work that way. It’s not a one-size-fits-all disease. There are so many variables at play at any given moment that some days it seems like too much for anyone to comprehend. Kelsey’s case seems this way more so than many others. You see, in addition to being diagnosed with T1D when she was nine, she was also born without a spleen (congenital asplenia) and a heart murmur (that closed the Christmas after her first birthday), and was diagnosed with hypothyroidism (an underactive thyroid gland) when she was in kindergarten.

Even with all these health issues, I strongly believe we can overcome this; we can fit diabetes around our lives and not the other way around. (BTW, I read a fantastic article about just this topic the other day. It’s a must-read for all families living with T1D.) This past week, though, has challenged me and our family, and my thought process.

We pushed Kelsey at the end of last year, along with the high school band instructor, to join marching band for the fall. Kelsey has been very reluctant for several reasons: 1) She is not athletic, and actually very clumsy, 2) She is really out of shape and worried about the physical demands (a whole other tangent I could go off on here!), and 3) She worries about her diabetes getting in the way – because she is out of shape and not athletic, exercise of any sort tends to stress her out, which leads to high blood sugars and ketones, and it’s a vicious cycle.

As predicted, all these worries have been realized and Kelsey has not participated in a complete practice since the term began and she has only performed in half a parade and no competitions. She has, and her fellow bandmates have, stressed herself out so much that she has fallen, tripped, been hit in the head, had extremely high blood sugars, ketones, and all the side effects – headaches, nausea, dizziness – and then we’ve dealt with the after-exercise low blood sugars that won’t come up no matter how much sugar we’ve shoved down her throat and how low we’ve turned her basal down.

A lot of it, I’m sure is self-fulfilling prophecy. She really didn’t want to take up marching band in the first place, she felt forced and cajoled – which she was. But we were hoping that, at some point, her fiery will and stubbornness would kick into overdrive and she would say “I’m going to get through this, I’m going to do my best, no matter what!” After all, to live with this disease, to really enjoy a long, healthy, and happy life, that is going to have to happen – she is going to have to show her diabetes that she is the boss, that it will not get in her way. So far, her fiery will and stubbornness have only served to make the situation as bad as it can possibly be – she didn’t want to do it and, by God, she’s not going to do it.

I’m at a loss. We’re at a loss. How can we help her get through this? And, maybe it’s not the marching band thing because I think we’ve resigned ourselves to the fact that she needs to be fair to her bandmates and instructor and if she isn’t going to participate, she needs to quit (Oooo, that word makes my blood boil!) so the band can move on. But, we have to help her realize that she is stronger than this disease and she cannot use it as an excuse to avoid life. She has to fight.

And This Is Where You Come In. . . Part of the reason I started this blog is to reach out to other parents to say “This is what we’re going through – how did you handle it?” and “This is what we did when this happen and it worked. We hope it helps you.” So, have you gone through this? What worked for you? What didn’t? Please share your advice in the comments & thanx!