Author Archives: miles4moms

Running Shoes. Just click your heels twice.

heart on top l final 2 two shoes one mission

Alright, I’ll give it to you straight, I have spent the last couple of hours emptying my heart onto this page, split it wide open, raw, maybe too raw. So I proofed it, questioned it, changed it, proofed it again and it just doesn’t feel like its ready to be shared. What I will share with you is the last couple of paragraphs…

“Later that night I laced up. I knew that the one thing that would smooth my edges would be to put on my running shoes and just work it out, physically, just let it all go.

My running shoes have come to represent so much for me. It doesn’t matter if I walk in them or run in them, heck I can just put them on and they change how I feel.

They offer me a moment to myself, a moment where I don’t have to explain, or share… just be. The only fight is between me and myself. Nothing to prove. I can cry if I want to and blame my teary eyes on the wind ūüėȬ†

I can just run it out.

When I won my first pair of running shoes it was as if I was holding Dorothy’s red slippers. A feeling like that is to be shared, duplicated, given…to others.

I have no doubt that every time a Mom laces up a pair of running shoes they will feel the magic that they hold. What a beautiful way to not only help, but to empower.”

I believe in Heart Strides. I hope you will to. Please follow the links below to find out how you can help support our efforts, help moms lace up for life.

https://www.bonfirefunds.com/heart-stride-two-shoes-one-mission

https://fundly.com/running-shoes-for-moms

Follow us on FB-

https://www.facebook.com/heartstrides

 

Z first look at CO

 

 

 

 

 

 

 

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Don’t do anything.

wolrd diabetes day logoTomorrow is World Diabetes Day and I don’t want you to do anything. Don’t share, don’t advocate, don’t help us find a cure, don’t think about T1D every second, every minute, every hour, don’t raise awareness, don’t donate, don’t tell your friends about it, don’t do a thing.

And then I want you to promise me one thing.

Don’t listen to me.

And don’t forget.

Don’t forget that I was there…in the same exact spot where some of you are right now, on the other side. I was learning about someone’s cause, reading about how they were fighting for a cure, something that I knew nothing about, wondering why would I do anything, because after all it didn’t affect me or my family. I was thinking about how their lives were so different than mine. I was probably reading about someone’s child, sister, mother, brother, father…friend, thinking about how hard it must be, feeling helpless, because what on earth could I possible to do help? I cared but not enough.

So, I didn’t listen, I didn’t advocate, I didn’t fund raise, I didn’t raise awareness. I didn’t do anything to help because I didn’t think that I could make a difference.

I didn’t do anything because I didn’t know.

I didn’t know that someday I would be thrown by the seat of my pants onto the other side, ripped from my comfortable spot on the sidelines, always an arms length away, always far enough away to make me feel safe. How foolish of me.

I didn’t know that someday that I, with my family, would be on the front lines of this dreadful, stupid disease. I didn’t know that it would turn our lives inside out and upside down in the blink of an eye. I didn’t know that it would redefine my path against my will, that it would rip my heart wide open.

But more than that,¬†I didn’t know how much power lies within us.

I didn’t know that one person can make a difference.

So don’t listen to me, what do I know.

 

 

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.

100 – 1,000 – 1,000,000 miles for a Cure. I can take a nap later.

photo(100)A storm was rolling through town. We were hanging out in the basement enjoying the thunder and change of weather.

Logan was laying on his bean bag chair, watching a movie on his DS, looking pretty relaxed. I of course had this twinge of guilt, “He should probably be reading right now,” I thought to myself.

As I walked past him to get the laundry he said “Mom, my legs are so weak, lift them up, I can’t lift them, if you let them go they’ll just drop to the ground.”

I didn’t think twice about it. He had lunch not that long ago, his number was in range, 136, and not that much time had passed. I just chalked it up to him goofing off, he’s a man of comfort and likes to relax, plus his numbers were good.

Still, when I walked past him again I wondered if I should check his blood sugar, no….that doesn’t make sense, he just had a banana, pb & j and a choc. chip cookie. I really don’t want to poke his fingers, he’s good. I look at him and he’s content, watching a movie on the DS. We’re good.

But I can’t let it go. I go through his numbers in my head, his blood sugar, how many carbs, how much insulin, it all adds up. But it doesn’t, because when I look at him again he looks completely sunken into the bean bag like his body weights four times as much as it actually does. Just as I go to grab his kit he says, “Mom, my legs are soooooo weak.” and I realize he’s slurring a little bit.

His blood sugar was 38. I didn’t panic, I usually don’t. I’ve always focused on not panicking in hopes that Logan will learn not to panic when it happens when I’m not there to help. Stay calm, don’t panic, take action.

My insides might be praying like nobody’s business, but my outsides are calm as I reach for the raisins. (He doesn’t drink juice or milk and hates the glucose tablets,¬† knock on wood¬† that he has always been able to chew, so raisins and m&m’s are our go too sweet when he’s low, or we could use the tube of Cakemate we keep in his kit).

I quickly do the math and before I can unfold my hand he grabs the raisins like he hasn’t eaten in weeks. He reaches for the rest of the raisins and some of them fall onto the floor, he starts to panic, he gets frustrated, he can’t get them into his mouth fast enough. I tell him that it’s o.k., to slow down a bit and then he moans..”Mom, I’m starving..I want M&M’s, pleeeease, I need M&M’s“.

I count out some M&M’s and hand them to him. He shovels them into his mouth as he sits on the bean bag moaning. His body is trying to figure it all out, “…am I low, am I high?“, the sugar is playing catch up and its doing its best to increase his blood glucose. Like me, it’s trying to find a middle ground and in the mean time it’s making him feel both ravenous and miserable. Very miserable.

I watch him. I look at his eyes, his posture and I rub his back (no scientific reason for it, just for my own well being, not sure that it helps raise his blood sugar but it makes us both feel better). I add up the number of carbs that he ate, waiting for him to ask for more, I know it’s coming because when he is low he could eat breakfast, lunch and dinner all in one setting.

I set the timer for 20 minutes so I can check his blood sugar again and make sure it’s going in the right direction. When I check it, it’s only 54, which is frustrating, it could just be slow moving, or he could have been lower than what the meter read.

I ask him how he feels, he’s slow to respond but says, “…hungry and my legs still feel really weak…“, and then he asks for a grilled cheese sandwich and an apple…and a hot dog…and can he please have some cheese and crackers. At least he’s not slurring.

He insists on going upstairs. I hesitated. I wanted him to stay put for awhile to get his ‘legs’ back but I also wanted him upstairs where I could see him.¬† His idea was the best idea, so I help him up the stairs. While he’s waiting for his food he begs for more M&M’s and raisins, “Mommmmmm, please, I’m starving“.

I hate not giving him more food because of how he’s feeling, and it’s hard to say no sometimes, but from experience I know that pretty soon his body will sync up and he’ll feel better. He won’t need the extra food, we just need to get his blood sugar back up so his brain can tell his body that he’s good and that he doesn’t need to eat.

Luckily I get him to wait, reminding him that this happens, that his body is trying to catch up with the sugar and vice versa, that he’s feeling hungry but that he’s o.k. and it’s o.k. to wait for his sandwich….and apple, and maybe a hot dog.

We check his blood sugar again, an hour later and he’s only 163. It’s a little out of his range but given that he’s had so many carbs I was surprised that his blood sugar wasn’t higher. I hold off dosing him, taking the chance that he would then go too high, making his blood sugar turn into a yo-yo, which in turn makes him miserable.

When he’s this low I wait to dose him, making sure he’s in range. There are all kinds of formula’s and charts to follow, but sometimes after you’ve followed the check-list and gone over it in your mind a hundred times, you have to go with your gut. You know your child, trust yourself.

As we wait for his numbers to settle in, I go over the numbers in my head. I double check the carbs to insulin ratio, the numbers add up, but they always add up, it’s all the other stuff that you can’t pin down.

As I try to figure out what could have made him go low he reminds me that he loves playing the Kinnect because he can get some exercise and have fun at the same time. Bingo.

He was playing the Kinnect before lunch, he was playing so hard that he was sweating. I’m guessing that his low was a result of the playing. (This is not the case for everyone, and not always the case for Logan either, sometimes exercise can make him go low, and sometimes depending on the activity and his adrenaline level it can make him go high).

Here we are an hour and half later, Logan runs down the stairs, “Mom, my legs feel better..” and he plops down on the floor humming as he goes back to work, creating another Lego masterpiece. Like it never happened.

When I go to download the photo of his meter, only to share in this post, I noticed that it’s “image100“, reminding me of my upcoming 100 mile ride. Ah, the irony.

Prior to Logan’s blood sugar going low I was thinking about how nice it would be to take a nap, skip my ride, just take a break. I was thinking about how nice it would be to be working right now, for¬† a lot of different reasons. Pay off my student loans before we have to pay for their college, this reason seems to top the list these days, I’m sure I’m not alone on this one.

Then this happened and my thoughts shifted. Grateful at times like this that I am here, with Logan and Zoe. Believe me, I do not take it for granted, or at least I hope I don’t. If I had a job that took me out of the home, we would make it work, just like all of the other working parents out there that are doing it, but until that day I hope that I appreciate that I am home.

I give thanks that Logan is safe, that this moment also gave Logan, Zoe and I to talk about our pact, that we are a team, that we need to help each other. We go through the drill, what to do if Logan is somewhere that we are not and what he needs to do and what Zoe can do to help. Making sure there is balance, we also talk about what Logan would do if she needed help.

I look at their sweet faces, Zoe excited that she remembers what to do and proud of herself as she adds some new ideas of how she can help, and then she throws in some ‘what if’ scenarios that are so bizarre I can only hope they never occur because I have no solutions for her.

As I wait for Logan’s numbers to go back up, as he pokes his finger for the 4th time in 40 minutes (two pokes that worked, and two more because of one faulty test strip and one finger poke where he declared his finger to be ’empty’ because he couldn’t get any blood out), as Zoe waits patiently, as her needs are set aside for the moment, I realize that this is not the moment to stop. I realize that I want to ride forever. One hundred miles, one thousand miles, one million miles…for a cure.

I make myself a deal, I’ll stay home, but no nap. I can nap later. Instead, I’ll ride on the trainer and set up the laptop so I can indulge in a movie on Netflix or get hooked on a T.V. Series and forget the clock.

I realize that there are days to stop, to rest, to take a break, and I appreciate them, but today T1D reminded me that it is fierce and that it never stops, it never gives Logan a break and it never lets us rest, so I’m not either. Not today. Today I realize that I am doing the right thing.

persevere

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

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