Saturday, November 17, 2012

Oops, we did it again!

How do you top an event that drew a big crowd and raised $20,000 in it's first year??

You do it again.

I'm proud to say that Miles of Hope to Cure Diabetes has raised over $40,000 in the past two years to donate to diabetes research. It's amazing to me that our little town of just 7,000 people has once again surpassed our expectations...with 100 runners for the 5k this year, and over 300 walkers registered, we managed to once again reach our goal and then some. The generosity and support we've gotten is truly overwhelming!

Of course, the best part is to see our kids happy faces as they enjoy a day to feel loved and supported by friends, family, and the community. I'm pretty sure Leah said "Thanks for doing this, mom!" at least 10 times that day.

Here's to HOPE, and to getting bigger and better! And to kicking some diabetes butt.

D-kids at Miles of Hope 2012



Tuesday, October 9, 2012

Too Much...

I've definitely neglected this blog over the past few months. Sometimes it's just too much.

Too much diabetes, too much nagging, too many ups and downs, too much thinking about, talking about, and having to deal with diabetes. Every. Day.

But I think that's ok. We didn't ask for this. Why would we always want to think about it? Why wouldn't writing about it seem like a chore when the very existence of diabetes itself makes me want to run away screaming from time to time? How could we NOT get burned out? I think maybe it's more normal to get fed up than to be always "happy" about something that can cause so much stress and despair.

The great thing is, times like those don't last forever. Sure, we're still not excited that Leah has diabetes. Of course, we still get stressed out and have to adapt to every crazy situation that it can cause. But I think letting yourself feel all of the emotions associated with it let's you finally step away and get back to a point where you can handle it again.

For me, it's been planning Miles of Hope 2012 that has brought me back. Our event last year blew us away. 250 people came out in our little town and walked with our kids....they gave their time and money.....and we were able to donate $20,000 to research that will hopefully cure our kids one day. THAT is amazing.

So when it came time to start planning again, in the middle of what I'd consider a pretty major burnout period, I will admit it was tough at first. Spending hours and hours planning something ABOUT diabetes when you'd really like it to all just go away is hard. But I'm lucky enough to have an amazing group of moms to do this with, and we keep each other sane. Our planning meetings tend to consist of a little planning, a lot of venting, and always coffee and treats. We get each other, and what it means to live with this, and it's so nice to be surrounded by people who just KNOW.

D-Moms at Miles of Hope 2011!


Then there's the response you see out of family, and friends, and the community. It's amazing when you see the people starting signing up, the money starting to be raised, and the sponsors that step up and donate time, and merchandise, and make the event possible.

And then there is of course our kids. Who cares if we are stressed out, or sick of diabetes, or have been busy planning for a few months. THEY are the ones dealing with so many physical and emotional ups and downs of diabetes every day. THEY are the reason we work so hard...to help them stay healthy and to make sure they know they are not alone in this. THEY keep us motivated and are really the strong ones in all of this.

D-Kids!


Leah has literally been counting the days until Miles of Hope this year. She has said at least five times today "I can't wait until Saturday!" Hearing that, and seeing her face surrounded by those that love her this weekend, is all I need. We will keep fighting, and keep it all in perspective, and even when it seems like too much, it never will be. There will never be enough we can do, so we'll just keep doing our best.




Wednesday, September 12, 2012

School Days

"Mom, did you see how my writing in my assignment notebook was really light? That's because I was low and it's really hard to focus on the pencil when I'm low."

She was 52 that afternoon when she called.

It's hard to imagine what a low feels like, and I've often asked her to describe it.

Imagine going about your daily business, and all of a sudden not being able to see the page in front of you. Or hear what people are saying, but not really be able to hear it. Sort of a tired, fuzzy, "yucky" confusion is the best I can describe from what she says.

We've had way too many of these episodes since school has started. Of course, any change in schedule always results in craziness for blood sugars. Then factor in three recesses, PE a few times a week, 90 degree heat, a late summer cold, etc.....all of which lead to absolute chaos on blood sugars.

Her school has been great, and she's handled a new classroom really well. Its just constant, and I wish she didn't have to be interrupted so many times throughout her day. We'll keep at it in the hopes to make her day as smooth as possible. I think of how far we've come from her diagnosis in preschool, and she's handling the responsibility and new situations so well. A new school year is always stressful and a bit overwhelming, but eventually the new routine settles in and the worry starts to fade here and there.

Leah has a friend with type 1 in her class as well, and her teacher remarked today about "how well these kids handle this," as she watched them prick their fingers and bolus for their lunch.  I always love the irony of that statement. They of course have no choice, and really know nothing different. And inside, you have no idea how they're "handling" it all. We have to make it look easy, and effortless, because there is no other option.

Third grade!!



Monday, July 9, 2012

Drop Off Day

It's a little too quiet in this house this morning.

Last night was the first night Leah had been away from home without my husband or I since her diagnosis three and a half years ago. She's at Diabetes Camp for the week, hopefully having the time of her life!

All packed up and ready to go!


To say it was a bit hard for me to drop her off is a bit of an understatement...despite her excitement and countdown leading up to the big day, I'll admit I was apprehensive about not seeing her for 5 days and about handing over her care to someone else.

Nothing can really prepare you for the way type 1 diabetes changes your life with your child. Their disease becomes your primary concern, you always have to know where they are, what they're doing, and how all of that may affect their blood sugar and safety. There are no more easy drop-offs, and every situation has to have a "plan." Getting up a few times a night to check on your child becomes second nature, and you forget that most of the world around you sleeps through the night. All of these things are not done out of paranoia, or overprotectiveness, but necessity. Your child's health and life depend on the care you give them.

To walk into camp and relinquish that care to total strangers is not an easy thing to do. However, I will say that the staff at Camp Granada yesterday made it easier than anticipated. The counselors, nurses, and dietitians in Leah's cabin were awesome--young, friendly, detail-oriented, and they put most of my concerns to rest. I love that she'll not only be surrounded by other kids with type 1 all week, but by counselors and staff who are great role models for living with diabetes as well. Of course I knew going into it that camp HAS to be extremely organized, but to see it and go through the check-in process made it easier.

Leah had a few tears when we left, which I fully expected. I'm confident she's having a great time...but I'll admit I woke up a few times throughout the night hoping she was fast asleep and safe and sound. I think anyone with a child with type 1 diabetes would say they're not quite the same person they were before their child's diagnosis...our lives and our mindset are forced to change, and getting used to a week without it around is an adjustment.

I'm so proud of Leah for taking this huge step, and I can hardly wait until Friday to find out all about her experience! In the meantime, I'l try to enjoy the sleep and the freedom for a few days, and be confident that she's in great hands.

She goes through so much and deserves a week to be a carefree kid without us around!!


Tuesday, June 12, 2012

Miles of Hope--ready to run!

We've picked a date, reserved the spot, and are ready for the second annual Miles of Hope to Cure Type 1 Diabetes!!

Due to last year's huge success, we've added a 5k run so supporters can choose the 2 mile walk route, or a 5k run route. Details to follow!!!

In other exciting news, Miles of Hope is featured on Mass General Hospital's Community Fundraising website for our support of Dr. Denise Faustman...


I'm so proud of what we were able to accomplish last year and am excited about this year! 




Friday, May 25, 2012

Home.

As a kid, you always remember the times you get to stay up past your bedtime. Whatever the reason--maybe a family party, maybe fireworks on the 4th of July-- there's plenty of times I can picture our whole family being in the car on the way home after dark, and being in that half-asleep, half-awake state. I could always tell we were almost home when the turns started to feel familiar....the path that led us into our driveway and the faint sound of the garage door going up. It was always so comforting to be sleepy and know you were about to be in your own bed at home.

We went to the drive-in tonight, a fun spur-of-the-moment event that made it really feel like summer. It was a beautiful night, with a wonderful breeze after the sun went down, and we sprawled out in the back of the minivan without a care in the world. The kids were thrilled with it all, especially staying up past their normal bedtime, and I was thrilled by the one-on-one conversations we had as we waited for the movie to start. The little things are the big things.

It's Summer!


On our way home the kids were almost asleep as we got into town and started the familiar turns that led to our house. I wondered if they could tell we were almost home just by the feel of it, if that path now feels familiar and comforting to them. I hope our home and our family always give them the security they need.

Parenting may not alway be easy, as life can throw quite a few curveballs your way. There's plenty of days the lack of a working pancreas around here and the normal kid-drama seems overwhelming to say the least. But no matter what else life gives us, all is right with the world if our little family is okay. They are my home.

Monday, April 30, 2012

Three.


I love this picture.

April 30, 2009.

Not because of the circumstances. We had just been seen in the ER and were waiting for a room at a children's hospital after just learning our child did indeed have Type 1 diabetes. 

What I love is her smile. Her innocence, and her trust in us as she so patiently waited and listened and put up with so much. The way the life came back to her eyes after that first shot of insulin, how she could eat and enjoy it and finally just FEEL better after weeks of what we didn't know was diabetes slowly taking her from us.

I remember all those moments, the symptoms that finally made sense, the realizations and shock, the scary feeling of bringing her home after a crash course in all-things-diabetes. The reality that a new life was starting, one far different from what we had known up to that point.

When this day rolls around each year I think of Leah in all those little moments and how she handled things. Her bravery, her composure, and that smile. Three years of living with diabetes is tough, and she's got a lot more ahead of her. We'll help each other, and she'll keep teaching us just as much as we teach her.

Saturday, April 7, 2012

Beeps and Peeps

Pure, uninterrupted sleep.

It doesn't happen around here very often. So when I woke up this morning to realize that not a single CGM alarm had gone off last night, I realized how great it felt to get a full night's sleep.

Having a CGM is wonderful and it's become a great part of our routine for Leah's care. But the incessant beeping can drive you completely nuts. We try to keep the alarms set at reasonable levels to avoid constant beeps, but the blood sugar of a 7 year old type 1 diabetic is erratic at best, and over the last few weeks we've been making changes left and right to try to keep up with growth spurts, hormones, or who knows what else is going on in that body that wreaks havoc on BG numbers. So it makes for a very "beepy" life--and I end up hearing them everywhere I go, even when Leah's not with me.

And there's of course the holidays....I'm all for treats and being a kid, but when school calls to tell you they're having 19 jellybeans when you're in the midst of trying to figure out whether current basal rates and insulin to carb ratios are working, it kind of throws off the day. The Easter bunny will bring some candy, and we'll get through, but I definitely will be happy when this current sugar-laden holiday is over and we can be done with the jellybeans, peeps, and marshmallow eggs for awhile.

Fingers crossed our changes stay for at least a few days and we get a few more beep-less nights.

Happy Spring!

Wednesday, March 14, 2012

Injuries Suck

I've been trying not to complain. Really. I swear. But it is 80 freaking degrees in Illinois in mid-March. And I can't run.

These babies are collecting dust the last few weeks.


Surprisingly, when you feel pain in your body for a good 3-4 months (in this case, my knee) it is actually a good idea to go to the doctor, instead of continuing to run roughly 20 miles per week because you're paranoid that if you don't your life will change dramatically and you'll never be able to finish another marathon. Who knew?

But really, I've been trying to NOT let it get me down. Every time a negative thought pops in my head like "Oh I feel so sorry for myself, I hate that I have an injury, wah, wah, wah...." I really do try to just swoop it away with something positive like "Thank goodness I can walk!" or "I'm so glad I don't need surgery!" But there are days that just gets really old.

And there are times that I just can't ignore the constant reminders around me of how good it would feel to be outside with the breeze in my face. Like hearing Lady Gaga or the Glee soundtrack on the radio (yes, I have an incredibly dorky playlist, and no, they don't really play the Glee soundtrack on the radio). Or seeing one of the thousand runners I saw outside on this incredibly gorgeous day.

Sigh. Instead I will do my silly stretches the physical therapist gives me, and ride the stationary bike for 30 minutes every day hoping I "graduate" to a new exercise that will send me one step closer to running again. And I'll try not to think about the gazillion calories I'm used to burning and how during the next 6 weeks or so I'll likely go slightly crazy and also gain 10 pounds.

Obviously, in the scheme of life this is small potatoes. But it's my routine, my stress relief, my way of life for the last few years. Everything just seems better when you can do what you love.

So embrace the moment, do what you like to do, and don't take it for granted. Today is a gift and you should make the most of it.

One of my favorite gifts.

Friday, March 2, 2012

Big Italian Salad

Quite possibly the world's perfect salad.




We added lots olives, bacon, and feta to make it even more delicious. Click here to make it!!

Easiest Minestrone Ever

This has been our go-to winter soup this year! It cooks up in under an hour, and seems to make the whole family happy. Perfect with salad and garlic bread!



2 tablespoons olive oil
2 medium carrots, peeled and chopped
1 celery stalk, chopped
1/2 white onion, chopped
1 1/2 cups shredded cabbage (or cheat and use cole slaw mix in a bag!)
1 small zucchini, chopped
1 can Italian diced tomatoes
2 cups chicken or vegetable broth
1 cup cooked cannelini beans

1. Heat olive oil over medium heat and add carrots, onions, and celery. Saute for 5-10 minutes until they start to soften.
2. Add cabbage/cole slaw mix and cook another 10 minutes, stirring frequently.
3. Add tomatoes and broth and turn heat to medium high. Bring to a slight boil, then reduce heat and simmer about 20 minutes, until veggies are soft.
4. Add beans and zucchini and cook only about 10 more minutes--doesn't take long to cook the zucchini.
5. Add salt and pepper to taste. You can always add more dried basil or fresh garlic if the seasoned tomatoes don't add enough flavor for you.

Very low carb--I usually just glance at the beans in her bowl and estimate the carbs in the amount she's eating.

Thursday, March 1, 2012

Bran Muffins



YUM!

These muffins were our breakfast this morning, and are super delicious (if you like bran muffins!). A nice, quick breakfast to grab and go on busy mornings, and a good dose of whole grain to start the day! They're from Heidi Swanson's new cookbook...her  blog and cookbooks are one of my favorite places to grab recipes from.














2 large eggs, lightly beaten
1 cup buttermilk
1/2 cup barely melted butter
1/4 cup maple syrup
1/2 cup wheat bran or oat bran
1 1/2 cups plain bran cereal
1 cup whole wheat pastry flour
1/4 cup sugar
1 teaspoon baking soda
1 teaspoon baking powder
1/2 teaspoon salt

1. Preheat oven to 400 degrees.
2. Combine butter, eggs, milk, and syrup. Stir in the bran and bran flakes and let sit for 5 minutes.
3. Combine flour, sugar, baking soda, baking powder, and salt. Add to wet ingredients and stir until just combined.
4. Dispense better evenly between 12 muffin cups.
5. Bake for 18-22 minutes (ours only took 18).

18 carbs each

I think I'll experiment by trying to swap coconut oil for some of the butter, and maybe add some unsweetened coconut flakes next time. They were a hit with my kids!

Thursday, February 23, 2012

So it begins...

The dreaded sleepover.

Leah ran in the door one afternoon this week and announced she had been invited to a birthday party. "And it's a sleepover!" she exclaimed. My heart sank, as I knew I'd finally have the conversation I'd been dreading. I shared her enthusiasm for a moment as she gushed about how excited she was and the plans they had already made.

"Can I go mom?"

"Of course, Leah, sounds like fun. But....you won't be able to spend the night."

It's like I could see the wheels turning in her head. In an instant, the look on her face said it all as the realization came into her mind. She put it all together without me saying anything else and just smiled cautiously and said "I know."

There were a few tears (which she insisted were about something else) and lots of hugs and reassuring that she could stay as late as she wanted and not miss out on any of the fun stuff. She nodded and agreed and assured me that she was not upset in the least. She's getting good at that.

I know it could be worse. I know she'll have a good time at the party, even though she'll have to leave early.

But she won't get to stay up late giggling with her friends. She won't get to wake up in the morning and have breakfast with the other girls. She'll have to leave because of a reason that feels unfair and cruel.

Someday she'll be older and things will be different. But to an almost 8 year old just wanting to have fun that day seems very far away. And to a parent trying to make it all feel better, it just hurts.

Monday, February 13, 2012

Mad about Valentine's Day!

Quite proud of the activity Leah and I came up with for her valentines day party at school....a giant Madlib for the kids to fill in that can also be a "card" for their teacher. Happy Valentine's Day!

Wednesday, February 1, 2012

Happy Camper

February 1st is always the first official day of registration for ADA Diabetes Camps. Leah has gone to a day camp the last three years and absolutely loves it, so I fully expected to be doing the same this year.

Last year in her Camp Can-Do decorated t-shirt


Imagine my surprise when last weekend she confidently announced "I think I'll go to overnight camp this year!"

While my heart started racing uncontrollably and my thoughts went immediately to total panic, I of course smiled and told her I thought it was a great idea!

And I DO think it's a wonderful idea...it just surprised me, as we had discussed it earlier in the year and her response was much different. Leah is responsible, a rule-follower, and wise beyond her years (largely due unfortunately to diabetes). But she's also quiet, a little shy, and not usually the first one in the room to speak up. So the fact that she feels comfortable to be away from us for 5 nights is, in my mind, a huge, important step for her. It also speaks volumes about her experience at diabetes camp in the previous years.

I am also confident in her safety, as I've seen the camp process and been able to view their organization and level at which they run. I am grateful that as her friends begin to talk about sleepovers and overnight camps of their own, that she has a safe, fun environment for her to fully enjoy the camp experience as well. I will admit I had mixed feelings as I hit the "submit" button this afternoon, because as much as I want her to do this, it is hard to think about letting go for a whole week when I'm used to being a 24 hour pancreas. It will be good for both of us.

I wanted her to be prepared for being on her own, and reminded her that once we sign up, there's no turning back. She'll be on her own for 5 days. She looked at me like I was crazy and said "Mom, I won't be alone. I will make new friends, and I'm good at that....expecially when they're just like me!"

Well said.

Tuesday, January 17, 2012

Thunder and Lightning

I think it was around 1am when I woke up to hear the heavy rain against the window, and the flashes of lightning and rumbles of thunder. Amidst this sleepy confusion I also heard the CGM alarm in the background.

Leah's Low Predicted alarm was sounding, and a finger test showed a BG of 50. Of course, this was after fighting highs all day. Apparently the site change had worked. So after she downed a juice box I tried to get back to asleep, only to hear her in our room about 20 minutes later... "I really don't feel good." She was still only in the 70's, so after a granola bar and temp basal set she settled back in, with the storm still howling in the background.

The weather in Illinois has been crazy this winter. After weeks of 40-50 degree temps, we finally had our first "snowstorm" last week. However, the temperature crept back up yesterday and resulted in the spring-like storm last night. So between thunder, lightning, and blood sugars, it was a pretty restless night in our house.

Needless to say, when my alarm went off at 4am the last thing I wanted to do was get up and go for a run. But I made my coffee, got ready to go, and stepped outside. It was not even 5am, and the temp was over 50 degrees, a nice breeze was blowing, and it even smelled like Spring! I made myself start running and had one of the best runs I've had in quite awhile.

Training for my second marathon has been a little daunting lately. Mentally, it can be hard to stay motivated, especially with sleep being so hard to come by in our house. And physically I've had some aches and pains that keep nagging and make me wonder if I should ease off the running a little.

Mornings like this are a great reminder of exactly why I get up so early, why I set goals and sign up for these silly races....because I enjoy it. To be outside and have the time to myself, to feel the stress of the previous night lift off my shoulders, to look up and realize you've made it halfway across town without even noticing it. It's a great feeling.

Today's a new day in diabetes-land and hopefully will be better than the last.

Wednesday, January 4, 2012

mySentry...what I've been waiting for!!

When Leah was diagnosed, we were told about this cool new technology that pretty soon "everyone would be offering"....a way to monitor your child's blood sugar remotely in your house through a system of screens or plug-ins that communicate wirelessly. When we started using the Minimed Revel CGM system, we were once again assured this technology was available and just awaiting FDA approval.

So imagine my excitement this morning when I saw a link to THIS....

That's right! Finally, a way to view Leah's blood sugar at night right by my bedside. It will alert us, tell us what attention her pump needs, and give us a little more peace of mind. After too many nights of scary lows, or highs that need immediate attention and not being able to hear her alarm in time, I'm so happy I could cry!

And of course this means we'd be able to take the silly sound system/microphone setup out of her room and let her be a normal kid. That might be the most important part. Not to mention if this truly is as easy to use as the video makes it seem, we could even take it other places and she can sleep in a different room without us waking up to check during the night or worrying that we're not hearing an alarm.

I've already called Medtronic, and let's just say we can add this to the list of pricey medical equipment that we'd own (and this one may or may not be covered by insurance). But considering the quality of life improvement this could mean, it should be well worth it.