Tag Archives: Health

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

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Turn back the clock. Please. No. Don’t.

M tony holding onto wet logan

Phew. I have found myself in a new place with new stuff. Startled by it? Yes. Uncomfortable? Always.

But what’s a girl to do? Well, it’s obvious isn’t it? She jumps right in there and figures it out.

I know exactly where I was when it happened and I know what started it. I saw a group of women with their cherub faced toddlers, they were laughing and playing, appearing to be fearless and care-free, and it came out of nowhere.

In an instant, and for the first time that I can remember, I wanted to go back to that time in Logan’s life before he had Type 1, before he had a speech disorder, before he would experience a roller coaster of being on the spectrum, before he would say, “Mom, please take the diabetes out of my body” and years later , “Mom, I’m afraid that people will pick on me because of my personality.”

Phew, there it is again, even as I write this, out of nowhere, it gently finds the hairline cracks in my armor and splits it wide open and makes me vulnerable. Parenting is not for the faint at heart that’s for sure.

But it’s all good. Really.

No really. Trust me. I have a plan. I have a checklist.

The last month has brought more than mud to the surface. Emotions have been raw, doubts were looming, challenges were, well, just that…challenging. I had to dig a little deeper. I had to let go. I had to remind myself that being too far in the past or too far in the future holds no power for being here right now. And I needed a nap.

When I get uncomfortable, when things surprise me, I’m reminded of who I am, who I’m not, what I’m made of and what gets me in trouble and what gets me out of trouble.

I’m stubborn, just ask my family. I’m determined. I am forever hopeful. I’m dependable.

I’m a hugger.

I’m a lover not a fighter, and not to mislead you because there are things and people that I will fight for until the end of time.

I will fight for a cure. Without a doubt.

I don’t like conflict but I know that finding a solution can get messy and it’s not always easy.

I want everyone to be heard, everyone to be honored.

I’m that person that always thinks of something to say in my car on the way home. I see both sides. Well, I try to see both sides. No one’s perfect.

I can be indecisive though I’ve been known to take off running and never look back.

I believe in people and in kindness. I believe that it is the little things that are really the big things.

Mean people get me down.

Rude people make me want to scream. In fact, I’ve been known to swear at them from the safety of my car, my laundry room and while hiking on a trail. Not a shocker given my feelings about conflict.

Being fierce both scares and inspires me.

I want everyone to have at least one person in their life that has their back, always remembering that there is strength in numbers.

I want a cure.

For everyone.

Is it possible? I have to believe.

Am I naive? Maybe.

I know that when Logan was born it never crossed my mind that we would be advocating for anything, much less a cure for Type 1 and raising awareness for Autism Spectrum Disorders.

You know what else I didn’t know, was how amazing it would all be.

Granted, at times life can be exhausting, frustrating, and all of those things that make me want to crawl into a cave and never come out. But what fun would that be? Well, lets be honest, we all need a break now and then, so there are days where that cave looks like a week on the beach with nothing but sunshine and rainbows.

So, this is my check list of sorts, bringing me full circle when life catches me by surprise.

I get uncomfortable, retreat, look at where I’ve been…no secret solution, just time and the willingness to sit with it for a bit and let the dust settle.

I admit it’s hard to go back there sometimes, but being uncomfortable is good in so many ways, it reminds me of what I have to work on and it gives me a glimpse of all that I cherish. 

Would I do anything differently given the chance to turn back the clock? I don’t know.

Well, that’s a lie because I would love to kiss those chubby cheeks, snuggle into their necks until they squeal, and scoop them up as their little legs try to carry them away in sheer delight. 

The truth is there is nothing that I could have done to spare Logan his diagnosis. What I can do is to keep advocating, raising awareness and to love everything about this challenging chaotic life.

I’m getting better at giving myself permission to feel uncomfortable. I’m quicker to get in the thick of it, trusting that I will come out stronger and more content. 

IMG_2342For me, the real beauty and power lies in the emerging, the rising up, the looking forward and celebrating all that brought me to this moment. Squeezing through those tight places and feeling so good when I reach the other side.

And this moment, it’s just another reminder to keep advocating, fund raising, connecting and serving… not only for my family and for myself, but for others, because though I speak for myself here, I know that I am not alone and we are in this together.

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/

“Mom, please take the diabetes out of my body”

Two summers ago we were visiting my family in Florida. We were taking a break from swimming, Logan and Zoe were coloring, watching “Phineas and Ferb”. Tony was in the office working and I was at the kitchen table.

Logan had never really talked about finding a cure, he hadn’t talked much about how diabetes made him feel. When we encouraged him to talk about how he felt, he seemed puzzled, like “what’s the big deal, I’m fine”. At the time, he somehow learned to embrace it, it was a part of his life and he took it in stride. So when out of the blue, he said “Mom, please take the diabetes out of my body”, I was left speechless and I think, for the first time since his diagnosis, I felt heartbroken.

I remember holding back the tears, trying not to move, not wanting to breathe for fear they would start to fall and never stop. I’m usually pretty steady, but this time I was caught off guard. I’m not sure how long it was before I answered him. I took a deep breath and said “There is nothing more I would like to do than to take the diabetes out of your body. I can’t take it out of your body but I can help raise money for research for a cure and I can teach people about Type 1 Diabetes”. “Oh, I hope they find a cure.” he replied, and quietly went back to coloring.

It took some time that day for me to move on from that moment. I wondered what else he was thinking about and if it was on his mind as much as it was mine. I also wondered why I had not advocated more strongly for him before this moment?

Since then I have made a promise to myself that I would become a stronger advocate to raise awareness and to continue to help raise funds for research, it’s a promise I intend to keep. The next time Logan comes to me with a question about a cure, or why there isn’t one yet, I want to be able to look him in the eye and know that I am doing everything I can to help find one, and to tell him with confidence that someday there will be one.

Thank you for being a part of our story, for sharing this time with us and for helping us raise awareness for Type 1 Diabetes, there is no way we could ever do it alone.

Did you know that-

  • Each year, more than 15,000 children and 15,000 adults – approximately 80 people per day – are diagnosed with type 1 diabetes in the U.S.2
  • The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by 3% annually worldwide. 4         (http://www.jdrf.org/index.cfm?page_id=102585)