There is always something that you can do…

Yikes! It’s been awhile, hope everyone is having a great summer. I’m nearing the 30 day mark before my JDRF 100 mile ride and at the same time digging my heels into the ground as I try to slow down these wonderful summer days, I love having my kids at home.

Just food for thought, I’ll be back again soon…have a great day!

never forget quote

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/

Run, ride, love, fundraise…repeat.

sky above meHi! I hope you are having a fun summer! I need to get caught up here but I am knee deep in my fundraising efforts for my 100 Mile JDRF ride, yes, that is 100 miles in one day. Gulp. But I can do it. Here’s more about why I will ride, I would be grateful if you would share this, thank you!

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

In the meantime I hope you will enjoy my recent post from my running blog,

http://miles4moms.wordpress.com/2013/06/02/running-makes-me-cry/

Thank you and have a fantastic summer, I’ll be back with more in a bit…thanks for stopping by!

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.

 

It only takes one.

I am only one

Running my 1/2 caused a little stir, but shaving my head, well that’s a different story. One person, one decision. It’s been an interesting couple of days.

Since day one I have always believed that it only takes one person. One person to read your blog and share it with others. One person to hold the door open for you when your arms are full. One person to smile at you and make your day. One person to give you a chance. One person to find a cure, one person to donate an organ, one person to save a life.

On the days that I wonder what I’m doing, when I doubt my path, when I doubt that one person can make a difference I will watch this video clip. The action of one saved the lives of many, and those lives in turn may have saved the lives of many. I am in awe of the human spirit and the power of one.

http://www.upworthy.com/669-jewish-children-were-saved-from-the-holocaust-by-a-single-man-this-is-how-th?c=ufb1

I said bold, not bald, right?

st baldricksWow, where does the time go? 2013 has no intentions of slowing down, does it? I tried to resist its determination and regroup when it caught me off-guard, but in the end I just had to surrender and hold on. So far I like where it has taken me. A little faster than I had anticipated but I imagine I will get used to its speed. I hope.

In the past few years I haven’t really thought much about New Years resolutions but this year I quietly made one for myself, to be bold. For me this means to reach as far as I can reach and then reach a little further.

BeBold-Summit

The mission of this blog has been to raise awareness for Type 1 Diabetes, to share our family’s experiences and we hope, to inspire advocacy for the T1D community and beyond. Keeping this in mind, when I recently heard about a fundraising event for childhood cancer I knew that it was an opportunity I wanted to be a part of. So on March 16th I will participate in the St. Baldrick’s fundraising event where I will have my head shaved. I’m hoping that this counts towards my bold quota.

Most of you here are familiar with my running blog, so as not to take up too much of your time I will include the link to my most recent post. I hope you have a few minutes to check it out if you haven’t already done so. Between you and me, I’m hoping for Alien fighter meets Annie Lennox, with a little G.I. Jane thrown in the mix. I’ll let you know how it turns out.

http://miles4moms.wordpress.com/2013/02/21/alien-fighter-or-conehead/

Call me naive but I believe we all have the power to make a difference.make-a-difference In some way or another we all advocate, we share our stories and we inspire.  A cure for Type 1 diabetes will always be my hearts desire. If I could shave my head to find a cure for T1D, I would live my life forever bald, if that was all it would take. But it takes more than that, I know that, and you know that. We can’t do it alone, that’s why I advocate for others when I can, however I can, especially when it makes me reach further than I thought I could. It might get uncomfortable, but I believe that’s when all the magic happens. I mean seriously, shaving my head? There’s bound to be magic in that moment.

A while back someone had sent me an e-mail, asking me why I advocate for others and why wouldn’t I just focus all of my efforts on T1D. Good question. Easy answer.

When I advocate for, let’s say, pediatric cancer, organ donation, epilepsy, Rubinstein-Taybi syndrome, or autism- I am also advocating for T1D. I don’t do it for the sole purpose of exchanging information. I do it because I care and because I believe that we are all connected. 

For me, the gift in advocating is not the exchange of information, statistics or outcomes, it is the exchange of compassion, of understanding and love, it’s really that simple. It’s the moment when I see myself in someone else, when I catch my breath and my heart stretches. It’s when I’m talking with a mom and I am gently reminded that we are stronger together. 

Making these connections, supporting and celebrating  mom’s, their children, their families, it’s all about the human spirit and coming together to be a bridge that helps all of us get to where we need to go. Whatever it is, whether we are looking to find a cure, to find compassion or to find kindness, I want to be a part of it. I don’t want to be afraid to do something, afraid to help a friend or a stranger, or afraid that I won’t have enough left to give to my own family. There is enough to go around for everyone. Believe that what you have to offer is enough.

The most beautiful thing about these connections is that they are not made by me, not really. I  don’t intentionally seek them out. Yes, I intentionally advocate, but I didn’t sit down one day and make a list of causes or people that I wanted to advocate for and then contact them. It usually goes like this- I read something, I see a YouTube clip, maybe a name keeps popping up, a song, and something stands out and makes a connection for me.

Sometimes someone makes an introduction, it feels random, out of the blue, I might not ‘get it’, but I pay attention to it, I listen. Sometime there’s a little rush, a flicker, you know…goosebumps, and that’s how I know that this is someone I want to advocate for, a cause I want to support and that there is something special in this connection. I take the risk, I reach out, I offer, and the path appears, the sharing deepens, the bond strengthens, the heart sings. Maybe it is for a brief moment, or maybe a lifetime, either way I don’t want to miss it.

serendipity

Selfishly, I want to surround myself with these amazing families, these incredible women that are strong beyond their belief and children that set our hearts on fire. I want to show my children that the world out there, the one that is just waiting for them, is filled with people that care and that it’s not just all about us, it’s about all of us.

I am grateful to be connected with so many wonderful people that continue to inspire and encourage me to be bold, to be brave. I can only hope that someday I can be that person for someone, to encourage them, to honor and celebrate the power they have to make a change.

So there you have it, why I advocate for others and all the magic that comes with it. Maybe more than you needed to know, maybe not.  I can’t wait to hear about your bold moments, your brave moments, the one’s that surprise you as much as they delight you. I have no doubt you will be brilliant.

hey-you-can-do-it