Tag Archives: JDRF

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

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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/

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!

I want to stay there forever.

IMG_3678(1)I fully enjoyed this moment when it was happening, and when I look at it now I think- I want to stay there forever.

We were walking on the trail when the kids found this amazing tree to climb on and explore. It naturally provided its own ‘seats’ for them to snuggle into and a big smooth trunk to lay upon. It was so strong and protective, gently inviting them into a safe space.

The water was like glass, the sun was setting, the air was crisp. I feel myself sigh as I recall the moment. It was that good.

When I first noticed Logan sitting there it felt a little surreal, a bit dreamy, as if he was sitting high above the clouds looking down, pondering life, being still. It was a moment untouched by diabetes. I wanted to stay there forever.

After a long week of holiday fun, which was filled with navigating the highs and lows of his blood sugars, this moment felt like landing on a soft pillow. I wanted to stay there forever.

In our every day life, with our regular routine of school, work, Scouts and other things, T1D is so embedded into our day that it just fits like a glove, usually. It’s not until we have a special occasion or visitors that T1D taps me on my shoulder, as if to remind me that it’s there, and what it is that we do to keep Logan healthy…and alive. (This is in no way a request for you not to visit us. The joy we get from sharing time with family and friends is a blessing in itself, though for us it is also a time that gives us pause as Logan’s needs are observed not only by us, but by family and friends).

During these times, I quickly realize how many times I say “Logan, check your blood sugar“, “What’s your blood sugar Logan?”, “Logan needs his tummy shot“, “Did you dose Logan?” and truly how restricting it feels, and sometimes can be. I don’t want to stay here forever.

T1D is manageable, there are many great advancements in the field, research efforts continue to move towards better ways to support people in their daily lives, but… sometimes it just plain ole’ sucks. Don’t get me wrong, I’m grateful for so many things, though after a week of extreme highs, extra pokes, sleepless nights and trying to keep Logan’s blood sugar in range, it not only fuels my efforts to raise awareness but to also continue raising funds for research.

Yes, some days it feels like a drop in the ocean. For those days I have this quote taped to the inside of my closet, I see it every morning, a reminder that every drop matters.

We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop. – Mother Teresa

I don’t have time to doubt my efforts as I try to reach people, to raise awareness or to convince them to support our cause. I might be naive in thinking that one person can make a difference. The thing is, I truly believe that one person can make a difference, and that person is you.

I share our lives with you to raise awareness, to help others understand the daily life of someone that has Type 1 Diabetes. I also share our lives to show Logan and Zoe that people are powerful, people are kind, people truly care and that we all have the ability to make a difference in someone’s life.

We are not unique, we stand with the many others that advocate for a cure, whether it be for Type 1 Diabetes, Cancer, Parkinson’s, Epilepsy, Cerebral Palsy, Pediatric Cancer or Alzheimer’s (the list for a cure is long, no cause is to be omitted, we stand united with all that are in search for a cure). We appreciate you finding those few minutes in your day to think about T1D.

So thank you for sticking with me as I write to share, to educate and with your help, to raise awareness. I will run, ride and walk until there is a cure. Like any parent advocating for their child, I will not stop until I can give Logan that moment again, the moment that lasts a lifetime, where his life is untouched by T1D. It is then that we will celebrate, give thanks… and we will stay there forever.

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/

Locked in, Locked out

Logan and Zoe will be quick to tell you that I have locked us out of our current house twice now. It won’t make sense to you, and it’s not worth the explanation, but we have two sets of keys and one does not have the house key on it. Not hard to figure out which set I grabbed today as I ran out the door.

Luckily Logan and Zoe are pretty adventurous and creative, so they weren’t phased by the Image061030 minutes it took Tony to rescue us. They kept themselves busy, soaking up the sun in the back yard and then sliding down the ice on the driveway.Image0611(1)

When I realized that I had the wrong keys, my first thought was, “How can I break in?”, and then my thoughts naturally go right to “What’s Logan’s blood sugar? do I have snacks? water? ” One thing I have never forgotten is Logan’s kit. It’s always with me, all the time, everywhere I go. I’m pretty organized and at times I may appear to be over-prepared, or freakishly worried to someone that doesn’t know that I am the mother of child who’s life depends on insulin.

Being outside with the kids, seeing them laying in the sun, grateful that it happened on a sunny day, made me think about Logan’s needs in a time like this. Things happen and I have to trust that I am prepared, if not then I trust that the right resources will be available and the right people will be there to assist us. I’m not naive, there could be a time that this isn’t true, but I believe it is quite rare.

Speaking of rare, about two years ago we were locked in a craft store because of a tornado. It was raining when we left the house, but it didn’t feel threatening, what’s a little rain? I had just come out of the restroom with Zoe and a sales clerk was gathering everyone up and telling us that we had to go to the back of the store, and that we could not leave. “What do you mean we can’t leave?” It seemed so bizarre at the time. A tornado had touched down and we were locked in until we heard otherwise. I remember thinking that it was o.k., they had water and candy if we needed it and I had snacks in my purse, but I did wonder if I had enough insulin and strips for a lengthy stay. After about an hour and a half, we were eventually let out, but the experience did change the way I thought about being prepared for something so unexpected.

Emergency preparedness is always at the back of my mind, whenever I read about natural disasters, hurricanes, tornadoes and the like, I always think about the people that need medical care and if they were prepared. Most people are not. I can tell you right now, that we have back up supplies but I don’t know if we have enough for an emergency and we don’t have a specific emergency kit. Guess what just got added to my to-do list.

A few summers ago it was raining and we had flash flooding when we were out running errands, (seriously folks, we don’t intentionally go out during bad weather, it just seems to happen that way for us…..which is all the more reason for us to be prepared). We were three blocks from our house, three blocks and we could not get to it. We tried from all directions and we could not get through, everything was blocked off because of the flooding. It was the strangest thing, to be so close to our house and not be able to get to it. We ended up staying at a local hotel, not even a mile from where we lived. Luckily we had enough supplies with us, including Logan’s 24-hr insulin, his Lantus. This is a shot that he gets at night, so we could have easily left it out of his kit. Yes, there is typically a Walgreen’s or a CVS on every corner, but if there is no power they are useless to us, the next stop I’m assuming, would be a hospital.

Things will happen and we can’t control anything, but we can be better prepared. It’s like thinking about the worst case scenario but not getting sucked into it and letting it paralyze you from living your life. Every unexpected experience has given me new insights on how we can be better prepared and I’m grateful for that.

With the recent news of hurricane Sandy tormenting the East Coast, most, if not all of us, probably considered what we would do in that situation and how we would keep our families safe with the resources we have. For me, I have to make sure that we do our best to have those resources on hand and to make sure we are prepared to keep Logan (and Zoe) safe.

I have always liked this picture, it was taken before Logan was diagnosed. When I look at it now I feel like is was a glimpse of what was to come, and also a reminder to be our own lifeguards, to the best of our abilities.

If you are reading this and you are living with someone that has Type 1 Diabetes I encourage you to take the steps to be prepared. I’ll let you know how my own emergency kit preparation goes. If you have already done that, kudos to you for making sure you are ready, and if you have any tips please share them with us. I would love to hear from you.

You can find helpful information at the websites listed below,

http://www.jdrf.org/index.cfm?page_id=104014

http://www.diabetes.org/living-with-diabetes/treatment-and-care/medication/tips-for-emergency-preparedness.html