Tag Archives: Family

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.

Staying grounded, holding on, letting go. It’s all good.

IMG_2428Our humble attempt at a self portrait the day we brought Logan home after he was first diagnosed. Happy to have him home after three days and two long nights in the hospital.

What has always caught my eye about this photo, aside from Zoe’s puzzled look and the pure joy that we were feeling on that day, is how tightly I am holding on to Logan, never to let him go.

We were all squished together trying to get the shot, wanting to stay in that moment forever. Happy, safe and for a second forgetting how our life had just been turned inside out, upside down. How Logan’s life had changed…forever.

Thinking of that day and where we are now makes me catch my breath, but then I sit tight, remind myself to trust, and try not to hold on so tight.  Letting go is good, but geez it can be hard sometimes.

Even as I write this I am sidetracked by thoughts of them growing too quickly, picturing their tiny little hands slowly slipping out of mine as they grow and explore. Excited and scared at the same time. They are going to be awesome people, I’m so excited to see what they do, where they go…but wait, don’t grow so fast.

I am already picturing them in college, and I’m that mom, screaming after them, “Wait, I still haven’t finished your scrapbook from kindergarten!!” How the heck does it happen so fast?

My heart aches a little bit. Expanding I’m sure. Bursting with a love that I can’t seem to get out fast enough before they set off into the world. I just don’t want to miss one minute of it. Not one.

I take a deep breath, chanting to myself trust, trust, trust. It’s all good. It really is.

This D-life that we have come to know has brought us to so many amazing crossroads, and so many wonderful people. Today was a reminder of all that as I connected with new D-Mom’s, gave thanks to supporters in our community and frantically, and without coffee I might add, tried to nail down my final registration info. for the ride. I couldn’t help but think of how far we’ve come.

If you didn’t know this already, I’m starting to get both excited and nervous about it all. The ride that is. I’m vacillating between What was I thinking? and What was I thinking?

I was in a total panic this morning when I found out that my bike needs to be shipped one week prior to my event and I felt like I was sending them one of my children, who knew I would get so attached to my bike! The whole letting go and holding on seems to be a recurring theme today.

So in the mean time to help me stay focused I decided to use this time to share some facts about T1D. All of the information I will be sharing with you is provided by the JDRF and can be found at http://www.jdrf.org. (I have paraphrased some of it to keep it simple, but it can be found in it’s entirety on their website).

T1D- the basics:

Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas STOPS producing insulin. Insulin is a hormone that enables people to get energy from food.

The body’s immune system ATTACKS and DESTROYS the insulin-producing cells in the pancreas, called BETA-CELLS.

The causes of T1D are not entirely understood, though scientists believe that both genetic factors and environmental triggers are involved.

THE ONSET OF T1D HAS NOTHING TO DO WITH DIET OR LIFESTYLE, THERE IS NOTHING YOU CAN DO TO PREVENT T1D AND AT THE MOMENT, NOTHING YOU CAN DO TO GET RID OF IT.

That’s all for today, please stay tuned for more fast facts about T1D as I do my best to stay grounded and count down the days until I ride.

Thanks for stopping by, for sharing and for cheering us on! I can hear the cowbell already!

(And your homework for today is not to remember all the T1D facts but to grab the person or pet next to you, squish together, hold on tight, take a self portrait and treasure it…always).

http://www2.jdrf.org/site/TR/Ride/JDRFNationalRides?px=2160337&pg=personal&fr_id=2244

Remember this…

ImageOne of my new favorite quote images. I’m staying the course, getting ready for the JDRF ride in Aug. Sharing my post from my other blog, Miles4Moms, simply because I am running out of time, getting ready for a dear friend to arrive and looking forward to her visit. She knows we live in this house but it’s pretty lived in and I need to get cleaning! Enjoy your weekend and thanks for stopping by.

http://miles4moms.wordpress.com/2013/06/07/you-are-going-to-fall/

Friends, they’re a big deal.

I have been wanting to write this post since the day it happened and here I am months later finally putting it out there. I have been thinking about all of the amazing women that I know and how grateful I am to have them in my life. They are always teaching me about who I am, who I am not and who I am yet to be.

I have realized how important they have become since Logan’s diagnosis and how some friends have drifted away and how new ones have emerged. Everyone’s timing always perfect.

If I could, I would post a photo of each and everyone of you, all of the amazing women in my life that have supported me through the good, the bad and the ugly. There is just not enough space to do that so I’m choosing a more recent photo with new friends because it reminds me of what all of my friends have in common. Compassion, love and generosity.

I was a new addition to this dynamic duo of women, they had warmly welcomed me into their already well established friendship after we moved from Wisconsin to Colorado.

Image0522On this day we were headed out for a hike and I was excited to explore new territory. As we were approaching the mountain trail I realized that the bars on my phone were disappearing and without mention, they picked up on my anxiousness and Shana quickly said, “Oh, don’t worry, we can go somewhere else, you’ll need your phone for when the school calls with Logan’s numbers“.

I hesitated, hating to change our plans. I knew that neither of them would mind, but I didn’t want to be the reason for a change our plans. Well, actually I didn’t want T1D to be the reason for it. It was just another gentle reminder that T1D is ALWAYS there and I was struggling with it a little bit, feeling restricted, and feeling selfish at the same time.

We drove back down the mountain to a different spot, both of them telling me not to worry about it, that it was no big deal, but it was a big deal. It may seem like such a small thing, but in my mind all of these small things add up and make me feel so incredibly lucky to have people like these two women in my life. We all deserve friends like this and I trust that you have them.

Often times people say, ‘Really, it’s not a big deal‘ and make changes to help out. Friends do this for each other. But you must know that it is a big deal and it doesn’t go unnoticed. We are so grateful for all of the things that you do.

For example, all of the times that people have changed a meal time so we could work around Logan’s T1D schedule. Or when his teachers figure out a way to include a treat during a time that Logan would typically have  snack so that he doesn’t have to bring his treat home or get an extra injection.  Or when people ask questions about T1D and are genuinely curious about what it is and how they can better understand it. Or the many times that my friends cut me some slack when they know I’ve had a sleepless night. Or, or, or. The list is long, but these are all the ‘little’ things that are big things in our book and there are so many.

We could never ask that you make these changes because we understand that everyone has needs and that everything always works out. Believe me, we always manage. Well I take that back. If we know you well enough, we might ask you, and if you’ve been reading my blog you already know that sometimes T1D just plain ole’ sucks. So I’m not trying to say that life is all rainbows and sunshine, what I am saying is that it is all good. Really.

And the asking for help part, ugh. I am forever telling my children to ask for help, yet I am the worst, I find it quite difficult to ask. I mean really, who doesn’t?

So, we might not ask, and we will not expect, but what we will do is to be grateful for every token of kindness that you offer. We will also be inspired to offer that kindness to someone else and make sure that we are the one’s that tell them, “Really, it’s no big deal“.

For me, among many things, T1D challenges my natural instinct to be spontaneous. My forever desire to just pick up and go, just do it, right now. I’ve gotten much better about it and have helped Logan manage his own desires to be spontaneous, it just takes a lot of planning, and it helps to be surrounded by people that will come off of the mountain for you when you need phone service.

As we celebrate Mothers Day I would also like to celebrate friends. We all believe that our friends are the best friends and they are, aren’t they? May you continue to have a friend at your side and to be that friend for someone else.

Sending out love and gratitude to all of the friends that have been a part of my life, and for those I am yet to meet. An extra shout out to my Iola friends, you know who you are, a community of women that should be honored with their own post. There is a lot of magic happening in central Wisconsin.

A special thank you to the friends in Logan’s life that have been so special to him along the way and who have always been so supportive of his T1D care. Thank you for stopping for BG checks in the middle of some serious play time, for not sharing food after your parents did everything in their power to teach you to share, and for understanding how unpredictable T1D can be, you guys are troopers. Hugs to Maddy, Lilly, Maddie, Nina and Tobin, thank you, I know that Logan misses your company.  (I am sure to have forgotten a few and I know that Logan would have more to add to this list if he were here to join in the conversation).

It’s all good, but some days it just feels good to say “it sucks” out loud.

It has been way too long since I’ve posted here. I’ve written one too many posts in my head that never made it here. Racing thoughts, good ideas, great learning moments…just not enough hours in the day.

So I’m a little surprised that I’ve carved out this time today but I was prompted to write after reading a post by Moira McCarthy Stanford. It just stirred something in me, in a way that was unexpected.

As Logan approaches his birthday and we move into double digits all I can think about is how his body will change, how hormones will come into play and how I’m doing my best not to think about the challenges we will face with his T1D care. I’m also thinking, “We’ve got this, but some days it just sucks”.

I struggle sometimes to even consider venting about our life with T1D as I have too many friends that grieve the loss of their children because of cancer. As I type this I’m thinking of a friend who is praying that her daughter doesn’t have any seizures today while having her wisdom teeth removed. A life with epilepsy.

I am also thinking of a friend that prays every second of the day that they will get the ‘call’ and that her daughter will get a new heart. A life filled with hope and prayer, that someone’s loss will give life, a life filled with gratitude and grace.

Many of us walk this path together, sharing fears, praying for cures, finding balance. So if I encourage my friends to express how they feel, to move through it, even when it’s uncomfortable, to say it out loud and know that it doesn’t define them, then I need to allow myself that same space and opportunity.

Of course I feel blessed that we are given tools and medications that can help us manage Logan’s T1D, but it is not to be forgotten that it is not a cure and a cure is what we really need.

I can only hope that everyone has someone in their life that they connect with, someone that they can just let it all out and say “You know what, this really sucks, I hate it” and not feel judged or looked upon as if they are losing ground or focus. Sometimes you just need to say it out loud, and I hope you do. It feels pretty good when the timing is right.

We all have our days, whatever our challenges but today I realized, in a different way, that I am connected to a world that too many of us know. The world of Type 1 Diabetes. I read Moira’s post, http://despitediabetes.com/the-truth-the-one-were-i-say-suckity-suck-suck-more-than-once/#comment-18456,  a D-Mom warrior in the highest regards, and it made me laugh, cry and cry a little bit more. Albeit I’m pms-ing, hopped up on Easter candy, considering a third cup of coffee and home bound with a very bummed out daughter that was sick for her entire Spring break and is home again today.

Even without the perfect storm this post would have made me cry. It hit home. It knocked at my back door when I was expecting a knock at the front door.
DSCN2333We do our best to teach Logan to move on, not to get stuck in ‘it’, that he can handle this, we can handle it, he can do anything he wants to, and he can, he will and we will. I have no doubt about it.

I know that we are somewhat on the right path as he recently described his life with T1D as “happy”. I kid you not, “happy”. I of course had a few choice words, but when he was asked to participate in a JDRF event, they asked him to give them one word that describes his life with T1D and he said “happy”.

I love him. I love that he feels this way, that even on the hard days he feels “happy”. But I must admit, sometimes it feels like we are putting on a play, getting applause for a job well done and then going behind the curtain, celebrating, exhausted but thrilled that we pulled it off and quietly wishing that the audience could see everything that took place in order to orchestrate this “play” we call a day in the life with diabetes.

I agree with Moira, T1D does suck, it can be managed, but it’s nothing like a cure…and I have to agree with her friend, I think on any given day the color of your underwear will have some affect on your numbers. Heck, when Logan’s hair stands straight up I think “Oh great, his numbers will be off today”, that’s how unpredictable and fickle it can be.

So thank you Moira, and thank you readers, for sitting with me in this moment and giving me some space to say “it sucks”, without judgement, without pity…just some breathing room to say it out loud.

Now, back to business, one sick kiddo at home, and a call from the health room letting me know that my D-child is not feeling well. So we move on, we are strong, we are positive, we are confident and we are almost out of Easter candy.

We care and that’s why we are vulnerable. Sometimes we just need to vent so we can remember why we are so determined and committed to this path to find a cure, not only for T1D, but for all, because we all have days like this, we all cry, scream and yell ‘It suck’s’ and regardless of our challenges, we are in this together.