Tag Archives: understanding

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

This happens.

blue_candlesI have written and deleted this post more than four times today.

Too many thoughts, too many words, too much emotion.

I wrote about being vulnerable, drama, fear, pity, judgement, and frustration.

I wrote about good friends, family, safe spaces, sage women, trusting your gut, taking that risk and helping others.

I had a point.

I had a message.

I had a goal but in the end I realized that it was just ‘stuff’.

All I really wanted to say is that my heart aches for this family. That this could happen to anyone, we could have been these parents, that child could have been Logan.

We weren’t.

He wasn’t.

This child is ‘our’ child, the T1D community has a family that is grieving, we grieve with them and for them. Tonight like so many other parents will be doing with their own children, I will check on Logan more than normal. I will curse T1D.

Do I think about this happening? Yes, but not as often as I used to.

Not that long ago, I woke up in the middle of the night with a sick feeling in my stomach that something was wrong. I immediately went and checked on Zoe and Logan.

For the first time since his diagnosis I checked to see if he was breathing.

Breathing.

I checked to see if he was breathing.

My first thought was to check his breathing, not his blood sugar.

It scared me.

A lot.

That night I scooted him over and slept next to him. Not because I was nervous, but because I was grateful.

Insulin is not a cure.

I usually don’t share articles about deaths due to T1D complications. I’m not sure why. I am completely and utterly aware of this reality. Maybe it’s because I want to be that person that believes and trusts that there is a way, that there is a cure coming…before it happens again.

This is why we fund raise, why we advocate and why we keep going and why we are so grateful for all that you do to help us find a cure.

Believe me, there will be times when we yell ‘TAG! Your it!’ because we will be tired, we will need your help and we will be so happy that you are there on the front lines with us.

So hug your kids tight, unplug, share your gifts with this world, be nice to each other, hold your judgments, forgive, be gentle with yourself, and fight the fight, whatever it may be.

You matter. You make a difference. Use your power for good. Life is too precious to hold back.

And remember…this happens.

Bless this family, their friends, and their children, may they feel loved and supported during this time.

http://laurenandandyplus5.blogspot.com/2013/10/to-jillian-ivy.html

 

 

 

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.

13.Won

DSCN1557

Logan and Zoe, having fun at the ESPN Expo, enjoying the photo ops, Jan. 2013.

Behind, behind, behind, that’s how I feel, chasing my tail, digging a hole, whatever you call it, that’s how I feel….but I quickly surrender to the thought that I am right where I’m supposed to be.

I had this list, kind of long actually, of things I wanted to talk about on the blog. I’ve been away from this one for awhile. Once the 1/2 at Disney with the JDRF team came upon us it felt like there was no stopping to take a few minutes to write, so thanks for sticking with us, lots of good stuff coming up in 2013.

I won’t bore you with the details of the race, but if you are interested you can check out the posts at my running blog, http://miles4moms.wordpress.com/2013/01/29/disney-and-so-the-magic-begins-or-was-it-mayhem/

I do have things I want to share, and I was sitting here putting my thoughts together when the health room aide called to talk about Logan’s lunch numbers. He was in the 300’s this morning, we thought he’d go down with a correction but he was still in the 300’s at lunch time. I probed, wondering if he was feeling o.k., the health room aide assured me that he was, though he was having a bit of a rough day. He had hit his head on a table and also had an ‘accident’. The high numbers, the low numbers, all of the numbers, well I can take all that, I know what to do with that, but when I hear that he had an ‘accident’ I instantly hate Type 1.

It might seem odd to you that I don’t “hate” Type 1 every day, I don’t like it, and probably do hate it every day, but most days I know what to do with it. Days like this though, it gets messy for me when it leads to awkward social moments for Logan, like this one.

I feel bad that he had to deal with it, just imagine. So I’m crossing my fingers that his classmates didn’t see it happen, I picture him rushing to the bathroom trying to prevent it from happening, and I’m hoping that he made it in time with little exposure to his peers. Not easy for a 9 year old boy to have an ‘accident’. This has not happened in such a long time, but when his numbers are high, it can happen, he can’t sense the urgency and its a real possibility for him that it can happen. I can’t say this is true for everyone that has diabetes, but it’s true for him, it always has been.

So the fundraising, the raising awareness, well it takes a back burner today because honestly, I hate diabetes today. I hate that it interferes with his social life at times like this. Then I think to myself, “Don’t lose sight, don’t give up hope, don’t get mad for too long, because there is a lot of work to do and being angry, well it has it’s place, it will drive me to stay on this path of finding a cure and raising awareness, but only if I use it for fuel and not a platform for a pity party.”

So, 13.1 miles, done. Second highest fundraiser, done. Being a part of a team that raised over $60,000 for T1D research, done. Being so proud of my kids, never done. Showing my children that there is always something we can do and that every dollar, every good intention and every kindness can encourage hope and be the foundation for change, continues to be done.

When I ran the 13.1 miles I liked that is was “13.1”, in my mind, the one standing for Type 1, and even though I had moments of getting caught up in my own race goals and not being able to meet them I had to walk away feeling that we had won on so many levels. So now I refer to it as 13.Won, because I believe someday we will win, and there will be a cure. In the meantime Logan, my niece Reagan and all of the other children burdened with Type 1 deserve our attention, our support and they deserve the best life that they can live.DSCN1931