Tag Archives: people

Duped.

got dupedSo…I got duped. We all got duped. The T1D community fell prey to information that was not true. Turns out that the blog and information that was recently shared by many of us was not true.

I imagine were not the only community to be duped. The write/writers of the blog professed to be teachers, having a child with down syndrome, one with T1D and if I remember correctly a set of triplets. That’s a lot of heart strings getting tugged.

Sadly it happens. We live in a fast-paced, media savvy culture, news travels fast, good or bad.

Mad? No. Frustrated? Maybe. Just wondering how we can protect ourselves in the future, so as a parent, a blogger and also as a community we don’t perpetuate the untrue and the drama. That we always honor the lives lost with truth and dignity, that we support families as they grieve and at the same time we continue to celebrate our strength, our successes and our commitment to a cure.

The truth is, duped or not, we still need a cure, I still have nights that I am worrisome about Logan’s numbers and I still get up and check him.

I won’t lie, the blog post in question got to me, I was feeling raw, tired and mad at T1D. I read that a child had died in their sleep from a low and I thought “Enough already!“.

At first I hesitated to post blue candles, or to even mention death but I did. I should have listened to my gut but my heart took over and that’s what they were counting on.

Early on I had decided not to share those stories, or the blue candles, not that they didn’t matter, of course they matter, but I struggled with it for different reasons. Even though I chose not to share the blue candles, when I saw them they were always a reminder of how strong this community is, how loving and supportive they are and how we grieve together and stay strong. Together.

The good news, yes, there is always good news, is that it has us talking. The T1D community is coming together, bringing their ideas and their thoughts to the table so something like this doesn’t happen again.

We are talking about how to find a way so that those who want to post blue candles can and do. We are talking about how we feel, where we need to make some changes and how we may need some type of protocol or etiquette as Moira McCarthy Stanford mentions in her most recent post.

So, duped? Yes. But you know what? We still need a cure. There will always be people out there that will thrive in the drama and who will try to get in the cracks of our armor, it happens but it doesn’t define us or our intentions. It doesn’t stop us. 

I don’t like that it happens. It takes our breath away, we struggle, we squirm, we think “How could they? How could we?”, but we are all human, we trust, we love, we care, we believe…and we don’t want to lose another child to the complications of T1D.

Don’t be mad or sad, be empowered, be vigilant, be determined. Take pause, be cautious, but don’t stop. This is not a reflection of your judgement but of your heart, you trusted, you cared and now you move on.

And you know what else? I am relieved, relieved that the post in question was not true. That a T1D child did not die in their sleep. That above all else, is what matters.

So duped? Yes. But it doesn’t change the truth, my truth or Logan’s truth, that T1D is serious and that we need a cure.

trueseeker

School Days

Lgoan's first day of schoolI came across this photo the other day while looking through an old file marked “diabetes stuff”. It is a picture of Logan’s first day of school, only about a month after his T1D diagnosis. He was a little under three and a half years old. It made me realize how far we have come as a family and it also made me think “Was he really that little when he was diagnosed?”

It’s not the beginning of a school year, but it’s always a good time to revisit resources that provide helpful information to make the transition to school easier when it comes. It’s also a good time to think about how things are going in the current year and if there is anything that needs to be addressed.

We have had different experiences every start of a school year, not one has been the same so we continue to learn and adjust as we go along. All schools are different, and all children are different so there isn’t one best way to approach it, though I would say that diplomacy can be a good skill to have.

D-Mom’s are different too, and sometimes it’s hard not to let our emotions get the best of us when we are feeling frustrated in the middle of a 504 meeting or when we are butting heads with a faculty or staff member. (A side note- I was in the middle of getting my Special Ed teaching license prior to moving to Colorado. I have been on both sides of the fence and every situation is unique, in which I believe they should be treated that way. I write this entry from the perspective of me, the parent, the mom…the Mama Bear ;)).

This reminds me of a time when we were feeling challenged by a school situation. It was a combination of things and we were trying to sift through them to figure out which one should be addressed first, though the lack of regard for the seriousness of T1D was at the top of our list. Let it be known that it wasn’t everyone that we encountered at school that felt this way, only a few, but sometimes it only takes a few.

On the morning of the first day of school, we took Logan’s supplies in, and sent him on his way. Later that day we had to stop by with some paperwork and we found Logan in the hallway, all by himself. We asked him where he was going and he seemed a little confused. At first I thought it was because of his new schedule, but then I realized that it was his blood sugar. We took him into the health room and he was 42! Talk about emotional, I was irate. I looked at my husband and said through a clenched smile, “You’ll have to be the one to talk to someone about this because I am so mad that it will be completely unproductive“.

After getting Logan’s blood sugar back in range and getting him back to class, my husband talked with the staff. There had been some confusion as to when and who was going to check Logan’s blood sugar. I truly believe that it was never intentional, but it did not stop me from being angry. I don’t like to be angry, it doesn’t feel good and nothing is ever resolved. So instead of being angry I became even more diligent in making sure that everyone knew exactly when and where Logan would have his blood sugar checked, mind you that is why we have the 504 meeting, to make sure everyone knows what is going on and who is responsible for his care. It is a legal document.

We have experienced all types of scenarios in a school environment, what we have learned over and over is not to let your emotions get in the way and to make sure the roads of communication are open and working. It takes everyone’s involvement and active participation to make sure all goes as planned, and if doesn’t go as planned, then to know what to do in that scenario as well.

Both the JDRF and the ADA websites have some wonderful resources and tips on working with your child’s school. Every situation will be different, you will be able to take the information and apply it to your own personal situation.

We have experienced situations in school where the staff is very open about us advocating and have allowed Logan talk to his classmates about T1D and then we’ve had situations where the school preferred that we didn’t share the information. However it may work out for you and your family, always trust that the right people will be there to help you along the way, and most of the time, they are the ones that you would least suspect.

http://www.jdrf.org/index.cfm?page_id=103461

http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/