Everyday Highs and Lows

You can't take the "boy" out of the boy, no matter how hard you try!

noreply@blogger.com (Shari) — Thu, 16 May 2013 20:41:00 +0000

Recently, Rocco was accepted as one of 150 children to go to Washington! We have been so excited about our trip since we got his acceptance letter. In July, our family (Michael and Zeke, too!) will be heading off to Capitol Hill to urge lawmakers to continue funding diabetes research for a cure and advanced technology.

However, with power comes great responsibility. One of Rocco's tasks is to write to his two senators and one representative and ask them each for an appointment. From there the wonderful people at JDRF make the appointment. Then, Rocco and other children from his state go to their offices and speak to these members. Hopefully, once they meet them and hear their stories it will resonate deeper on voting day. It's always better to put a names and faces to the disease.

He was having lots of fun writing the letters but then he made himself giggle. He said "Mom, look oops!"

Notice the last word.

We both got the belly giggles and thanked god for erasers!

I guess you can take a boy to Washington... Have him speak on Capitol Hill...

You can even have him help raise $800,000 at a fundraiser.

You can shower him and dress him up in a tuxedo.

But at the end of the day, you can't take the "boy" out of the boy...

I only hope this particular senator has a raised a few boys of his own and doesn't notice that extra erased "T"! Lol!

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Dear Old Navy, Upgrade Yourself!

noreply@blogger.com (Shari) — Tue, 14 May 2013 15:47:00 +0000

Dear Old Navy,

Upgrade yourself!

In 1991, my friend told me about a new store called Old Navy. She said they were owned by The Gap, but their stores were like warehouses so they could charge less. At the time, I was making $7.43 an hour, so I was thrilled at the prospect of getting Gap-like clothes on the cheap! Much to my delight, the clothes were cute and hip!

Over the past twenty one (OMG!) years, I have made many trips to my fav Old Navy. I feel like it is the one store that has kept me up with the trends along the way. Don’t worry though; I was wise enough to skip the Super Low Rise Skinny Jeans a couple years back! Once you become a mother, anything low-rise is not enticing unless you are talking about a toddler kiddie pool!

So the other day, as I do every spring, I hopped over to my favorite Old Navy location to gather up the latest fashions that would take me through the spring season. I always get excited to shed my winter layers, in hopes of finding a cute dress or some white capris.

I grabbed about twenty pieces. I know, a little excessive, but when you get to be my age and you have gained a few pounds over the winter, you need options. Getting re-dressed to trek back through the store in your socks, to grab the next size is no longer "cute"...

So I was on an exciting high in thinking about my selections, until I walked into the industrial Old Navy dressing room, I looked around and quickly became “over it!” By “over it”, I mean I am done stepping into their warehousey dressing rooms. ENOUGH! I have been doing this for more than twenty years. So, I decided I will write them a letter.

Dear Old Navy,

While I appreciate the early years of your company trying to cut corners to spare my budget, I am officially calling you out.

Your from-up-above dressing room lighting is making the bags under my eyes look worse! This lighting is harsh, industrial and florescent. I won’t even begin to tell you what it does to my winter-hibernated, skin tone. I speak for the entire female population, when I say that your lighting doesn’t do any good for any of us. Even Jessica Alba doesn’t look good under florescent lighting. Come on! Can ya help a girl out? Or all of us out? This is 2013, there are plenty of mood lighting light bulb options out there. Just make sure you spring for the "make me look like a super, skinny, supermodel ones with skin like Halle Barry. Oh yes, they'll cost a little more but I promise more women will come!

Your styles are “Oh, so cute”, but when I step in the grimy dirt collecting on your cement floors and hang my selections on your plywood walls, they don’t seem cute anymore. They seem cheap.

Then when I try on the clothes and look into your basic, non-elongated mirrors that seem to shorten and widen me, I feel cheap. Please, I need trick mirrors that make me look long and thin!

Do me a favor. Go shopping. Go into Ann Taylor’s or Banana Republic’s dressing rooms. It’s like getting dressed in the queen’s quarters! OK, maybe not that good, but other stores have created dressing rooms with side lighting, three-way elongating mirrors, and fabric walls. When you hang your new treasures on those walls, you feel like your new threads are luxurious and truly special.

So I officially call you out. Take a minute and stop worrying about next fall’s fashions and just please upgrade yourself! If you take some of the money you would normally spend on B-List actors in next season’s jingle-jangle commercials, I am sure you will have enough for new, upgraded dressing rooms.

My girlfriends and I will wait. We promise to come buy our kids’ back-to-school fashions from you once you are finished.

In your last commercial you urged me to “Upgrade my wardrobe.” I will if you will. You go first...

Thank you for your consideration.

Sincerely,

Shari

Happy Martyr's Day everyone!

noreply@blogger.com (Shari) — Sun, 12 May 2013 15:04:00 +0000

You have a lot of time on your hands when you are not being someone's pancreas...

My husband took the boys camping for the weekend to one of last remaining remote areas with no cell phone service.

I have three days with no one to take care of. Let me just say that again so it sinks in...

I have three days with no one to take care of! Wow! That felt good.

Truthfully, I am giddy! No cell phone texts with blood sugar numbers. No snacks. No meals. No whining. No talking about farting. No little boy toys. No fighting over "just one more level". Best of all, no Minecraft!!!!

I don't even have my new puppy yet!

Just me for three whole days and only my wants and needs! Yippee! Gee... Gosh, I wonder what those will actually be... Seriously. I have no idea.

Ok what to do first? Drink? Unabashedly, eat carbs? Call and catch up with my BFFs? Clean the house of any trace of my family?

I know... NAP!!!! Nap without the cell phone glued to my head.

So since I dropped them off I made a list of how my first night went!

Drove home from dropping the boys with my husband. Turned on inappropriate Eminem and sang really loud!

Saved a turtle (see the post below).

Got home turned off the phone and took a NAP!

Was so excited to take nap I forgot about a conference call I was supposed to be on and missed half of it once I woke up. Sorry to my friends who had to wait. I'm sure you understand. You have D kids too!

Wrote a blog post.

Turned in an article for my job.

Wore Jammies from 5 til noon the next day.

Played with my bird.

Texted BFFs.

Sat on the deck and stared into space. Had original thoughts. Some deep. Some not.

Drank a beer.

Checked phone for a blood sugar reading.

Again...

Posted something on FB so when I checked the phone there might be something to actually check. I knew I fooling myself into thinking I was checking phone for Facebook love when reality is that I have a terrible habit of checking it when Rocco isn't with me.

Wished I knew how to smoke because smoking in my house without anyone was around would probably be fun.

Listened to Pink on my iPod and sang really loudly!!

Danced uninhibited. Around the whole house.

Cleaned bird cage.

Straightened house for an hour. Putting/erasing any signs of my needy family. Put away shoes, kid cups, back packs, socks, husband's randoms, lunch boxes, toothbrushes, wiped toothpaste out of sinks.

Looked around when I was done and it looked too pretty. Too neat. It was eery. So I left my glass in the sink and didn't wipe down the kitchen table. There. Better.

Thought about how lonely I will be when they go to college. Cried a little about the idea if it. Cried a little more when I looked at their baby pictures.

Then spied a pair of little boy superhero underware left behind the bathroom door AGAIN and got over all that sadness real quickly. Counted how many years til college.

Danced again.

Did a load of laundry.

Realized I hadn't checked phone in an hour. Progress.

Looked in a magazine. Made a mental to-do list of all things I probably will never do like make a planter, make the perfect pot roast and lose my belly fat.

Ate some carbs and didn't check the box for the carb count. Why are uncrustables the world's perfect food?

Locked up the house and covered the bird cage. Silently thanked my husband for always doing these tasks each night to protect us all.

Snuggled in to watch Scandal my favorite show. Ate a mini snickers. Checked the carbs out of habit. Cursed myself for my lack of progress and ate one more.

Watched three more shows. Stayed up until 1 am because tomorrow I DON'T HAVE TO WAKE UP FOR ANYONE.

Included a prayer to let me please not wake up wide awake at 7. Please God!

Didn't check my son's midnight blood sugar number and didn't set my alarm for his 3 am blood sugar number. Silently thanked my husband for doing these tasks for me for the next three nights! In the woods.

Fell asleep happy!

The next couple of days were pretty much the same thing. On purpose, I didn't do any dishes all weekend. I realized, pretty much, I only use glasses, bowls and paper plates. Ha!

Checking my phone became less frequent as I kept myself busy with seeing friends, and shopping with my mom and sister. I slept in every morning until 9 am. I couldn't force myself past that.

On Saturday night, I missed them terribly. Checking my phone now became a habit again, but this time not for blood sugar numbers, but for any sign of them. Sometimes they can text from the river. By Saturday night, my house felt eery again, like I was missing something. Sunday morning, I woke up and decided to do their laundry. I was going to avoid any kid-related chores all weekend but couldn't help myself. It felt like home again to have all their crap laid out on the couches. I was happy to miss them.

I think every mother on Mother's Day who has young children should get this present. Not flowers or candy but a chance to see how boring life would be without our kids and get a chance to miss them.

Yes, I know ten minutes after they get home today, I will be rolling my eyes at their silly/"stupid" antics. But this time, I think the eye roll with come with a little happy, smirk on my face. Realizing the silliness of being seven won't be here for long and I should appreciate the pre-bedtime giggly show they put on every night as, actually not one more thing in my way but, part of the fun!

Thanks Michael for the gift of appreciating you all again and shouldering the kid-raising responsibility for a weekend! I missed you!

Happy Mother's Day to all the wonderful mothers out there! I hope you get a chance to miss your kids soon too! You deserve the break!

To my own mother, thank you for raising me with all the unconditional love you had! I am nothing without you. You are my rock and I love you. Most of all, I appreciate you.

Here are some funny cartoons for your reading pleasure.

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Because sometimes ya gotta just pull over...

noreply@blogger.com (Shari) — Thu, 09 May 2013 23:54:00 +0000

Don't forget to like our Facebook page! We have 306 likes so far, come be number 307!

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Oh, what a night!

noreply@blogger.com (Shari) — Sun, 05 May 2013 01:44:00 +0000

What an amazing night! Last night, my little guy Rocco was able to share his story to raise some money for the Artificial Pancreas Project with JDRF. It was a black tie affair that invited people to come and participate in a live and silent auction. I have been to a silent auction before but not a live one. It was so thrilling to see those paddles fly up knowing that each generous donation would be able to directly affect Rocco by (hopefully) middle school. Throughout the night, I was humbly touched by everyone's random generosity toward the cause. In the middle of the auction, as the auctioneer was yelling out numbers and paddle were flying, I made a promise to myself. I decided to longer sit on the sidelines, as I have done in the past, and wait for someone else to help Rocco. A cure is getting close but a better way of life for Rocco is even closer. It is my turn to help. I have to forget about being shy and afraid to ask people to give. I have to ask because people are kind-hearted and they want to help. Our family alone raised $1210!!!! Just by asking a couple of times on Facebook. It was $210 over a goal I really thought we would NEVER reach. It was humbled by their love for Rocco and his daily struggle. Their special gifts overwhelmed my heart but taught me that if I find my courage and just politely ask, I can make life easier for him. If he could get an artificial pancreas by middle school, he won't get teased by his friends that his "mommy" has to follow him around. This hasn't happened to us yet but I have seen it happen to other children who's mother's post their terribly sad stories on Facebook. I know that eventually kids can take a mean turn. An artificial pancreas will give Rocco freedom to handle his diabetes, on his own.

The way it works is a simple concept partner with mind-blowing technology. It will automatically check his blood sugar every three minutes and show up on his insulin pump. If the number goes higher than a good range his pump will automatically give him insulin. If his blood sugar goes low it will beep and tell him to eat before it gets dangerous. People in the US are already wearing these and testing them. Eventually, it will be tested and safe for kids. It is so close and that is why I promised myself to start helping. I have a voice. I need to use it. I will use it.

My next step is the Children's Congress where Rocco and I will go and urge lawmakers to continue funding the research needed for the Artificial Pancreas Project and the cure. It is in danger of not being passed. Then, I will do the walk this year and that will take us into the Fall. After that, maybe I can do something at the boy's school. Who knows... I do know that it just has to be done. I am blessed to have Rocco WANT to participate in all of it. He said the Promise Ball last night was fun and he liked being up near the stage. He said his favorite part was talking to the people. When he was a baby, before any of this diabetes stuff came to us, I told Michael that I saw him, in his future, at a podium. My friend recently said he sounded like a future Senator. He says he wants to rescue sea turtles. I'm not sure what he will become but something tells me this won't be his last time in a tux by a stage! It exciting to watch it all unfold!

Anyway, here are some pictures from the fun night!

Getting fitted!

Zeke loved it too!

I can't wait to put this one next to their prom photos!

Little adults!

Please, don't get muddy before we leave...

Rocco's first hors d' oeuvres! He was very intrigued by a lamb chop.

Keeping them busy while the adults mingled. Don't judge! It was either this or they would start wrestling! Haha!

These were the other little angels in the video. They both have type one. They are sisters. Their mom and I have become such great friends during this process. We are blessed to know them.

This is the wonderful superwoman that put it all together! What a talented lady!

The grandmas! They looked so beautiful!!!

Rocco was excited to see a mini bottle of ketchup all to himself.

Our fancy meal of steak and salmon! Yummy!

Now this picture here made it all worth it. I have been so worried that all this attention for Rocco would send Zeke into a tail spin. But, he was so nice to Rocco the whole night. He was sweet and at one point scruffied Rocco on the head and said "I'm here for ya bro!" which translates into "I'm proud of you" in brother language. I took Zeke out all day today to make it his special day.

All done with dinner! Off to work!

This was the auctioneer. He was really awesome. He sent an electric vibe through the whole audience that was really the reason that they raised so much money! The kids were asked to pass out roses to the highest bidders! Rocco said he passed them the rose then told them "Thanks for coming!" and the he said they high-fived and fist-bumped him. He was so small I could only see his little blonde head make it through the crowd. It was cute.

My mother-in-law even got in on the auction action!

And then my mom couldn't help herself! We all were so electrified! It was fun!

Family photo.

Superwoman let us take home a momento!

Thanks to Jeff, Donna, Kristin, Skyler, Beeba, Aunt Mandy, Pete, Maddie, Cole, Kim, Stephanie, Cathy, Sarah, Evan, Candace, Sherri, Cheryl, Uncle Dave, Lynnette, Miss Karla, Mala, Ruth, Kelli and Coach Dave for helping me exceed my goal!!!

You all rock!

The best part of the night is that they raised

$770,000!!!!!

So impressive! What a night! What fun to help!

Getting Fancy!

noreply@blogger.com (Shari) — Thu, 02 May 2013 23:51:00 +0000

We are getting so excited for the JDRF Promise Ball!

Finally!

noreply@blogger.com (Shari) — Sat, 27 Apr 2013 22:02:00 +0000

When you go through five years of infertility, you feel devastated and defeated.

When you go through nine months of a high-twin pregnancy, you feel scared and out of control.

When your heart fails and you are tachycardic for five years, you feel heavy.

When you take care of a child with type 1 diabetes, you feel anxious.

I have felt all of this. My life literally went from one of these things to another over the past twelve years. All of these "siutations" ate up my thirties.

Today, I am 41 and as the weather changed from Winter to Spring finally, I decided to try to walk down a trail near my house. Alone. Over the past twelve years, this was never an option for one of the above reasons.

As I walked, I felt nothing. I wasn't devastated or defeated. My heart rate stayed strong and steady. A text with Rocco's blood sugar came through and he was at 112, the perfect number. I wasn't toting around two, whining toddlers.

I actually was getting annoyed that I couldn't find the perfect song in my playlist. Then, all of a sudden, I stopped. I realized not finding the perfect song was my biggest problem.

I smiled.

It felt so good to smile and to walk and to feel light.

I thought about how all of my "situations" were just part of my path. Even though these times were hard and sometimes devastating, I now can appreciate all that each one of them has taught me. I know it is the strength that I gained by coming out on the healthy side of each of these that I will draw from when my boys return home seeking advice for their "situations." I hope that when faced with adverse times, they will empower themselves to pull from the depths of their strength. I hope they will allow themselves to move past the victim moments, learn from their situations and carry on wiser than they otherwise would have.

I knew within hours Rocco's blood sugar would probably spike or drop and the anxiety monster would return. But on my walk all alone, I decided to appreciate my story so far and revel in the fact that maybe for me the worst that life has to offer is past me. Fingers crossed and knocking on wood. I made it through and I will choose the turn my forties into a time of less worry and more love. To give back to those who helped me during the last twelve years. I am healthy, strong and capable now. I have energy and gratitude to fuel me. I will give love and help away like free flowers. Everyone loves free flowers, right?

The sun on my head felt good. I walked three miles that day. Light and happy. Finally.

This is me, happy!

noreply@blogger.com (Shari) — Tue, 23 Apr 2013 01:19:00 +0000

Last Fall, we put my beautiful King down. He was a wonderful dog but, at the end when he was fifteen, he just had enough. On our last walk together we got three quarters around the block and he stopped, panting heavily, he just looked at me. He didn't want to walk anymore. He was tired. I knew right then, it would be our last walk together. It took me a long time to get used to him not being around. I HATED the still silence of a house without an animal. To fill the house with the presence of an animal, we adopted our feathery friend, Sophia. Even though she has been a great pet and entertained us with many antics along the way, I still missed a dog. I have had a dog since I was twenty. Then, to not have one, was weird. The house was always so still. So Michael and I decided in the Spring we would adopt a puppy.

After waiting since she was born in March, we FINALLY got to go and pick her out! I am not a patient person. The waiting was killing me. This Sunday was finally our day to go and meet our girl! We took an hour looking at all of the adorable puppies that, at first, just looked all the same but then, there she was. While all the other puppies were looking down and playing together she just sat in the middle of them and stared at us. She was smaller than almost all of them so I didn't pick her up right away. But, she just kept looking and I kept looking back. When I finally did pick up the furry lovebug, I was in love!

So, without further adieu, meet Shay!

In my last post, I spoke about how the little boy in the video said, "This is what my mom looks like when she is worried." Well, most times I make that same worried face but today when I picked up my new, little bundle of joy, I said in my head, "This is what I look like when I'm happy!" Just then Michael said, "Say cheese, mommy!"

So, this is me really happy! I thought about calling her Happy but decided Shay was a little more mature. Haha!

I only hope I can remember this wonderful feeling when she pees on my carpet, chews my shoes and doesn't walk on the leash very well. Good thing I've got this picture to remind me.

We don't get her until mid-May but as soon as we get her home. I'll post some more pictures! Feel free to post the story about how you knew your pet was "the one" below! I'd love to hear your story.

Connecting

noreply@blogger.com (Shari) — Fri, 19 Apr 2013 15:00:00 +0000

My friend Amy shared a wonderful video on Facebook a couple of days ago. It gave me the chance to see my life through someone else's. The video speaks of everything Michael and I do every day to ensure Rocco has a normal life, long and free of complications. This video says it all.

This video helped me see my life through this mom and dad's story. I cried while watching it. I was halfway through it and I wondered why I was so captivated by their story. I just kept feeling so bad for the mom. Watching her struggle and seeing her worried face, I understood her pain. Then, when the cute, little boy said, "This is what my mom looks like when she's worried," It hit me. She was me. I asked myself, "Is that what I look like all day? Is that what they see when I worry?"

I remember one time when the boys were two, I was worried about something (I can't remember what now) but I sat down and slumped, exhausted and defeated. Rocco came over to me he put his tiny arm around my shoulders and said, "Rewax mommy. Just rewax."

Now, I often chant that to myself in my moments of overwhelming parenthood. It lightens me as I remember that feeling of that tiny little arm around me. Haha!

Also, as I watched it, I saw the mom moving through her day. I was mesmerized by watching her daily activites. I watched her as she carried on her day, all the while dedicating every step along the way to her son's care. I related to her instantly.

If someone asked you what do you do all day. It's really hard to answer, isn't it?

It's really hard for me to answer too, because most of my daily tasks seem very mundane. These activities, when I say them out loud, don’t seem as noteworthy as those of someone with conference calls, flights, deadlines and itineraries. My daily activities are basic. However, there is one activity that I accomplish every day that until I heard it in this video, I’ve never given myself credit for. It is my main activity. It is my most prominent activity. It IS what I do all day.

I keep my son alive.

I know it sounds very melodramatic, but it is true. It is the basis for every single activity I do.

If I go to Target to get groceries, I get snacks under 15 carbs because there is no recess after snack time. When there is no recess, Rocco doesn't get the exercise he needs to help him process high-carb foods. If I get something with more than 15 carbs for these times, Rocco's blood sugar always seems to go too high.

If his blood sugar is high for more than a couple of readings, I go to his school to change his port.

When I research after-school activities, I look for one for which I can be there to monitor his blood sugar throughout the activity.

When I plan family vacations, I find ones that are not too swim-intensive because I don't want Rocco to have his pump off for very long.

Every meal I plan, I consider his previous blood sugars when finalizing the menu.

So, if you were to ask me, "What do you do all day?" I would have to say, "Well, I went to Target, I cleaned my house and I kept my kid alive all day." Even as I type the words they seem too dramatic to "type out loud”. However, as dramatic as they are, they are still true.

As parents caring for kids with diabetes we go about our days with a combination of hope and anxiety. Defeat hits us at least once a day, but so does triumph. The roller coaster that our kids feel physically exactly mirrors what we feel emotionally.

It is no surprise that we say "test" your blood sugar. That reading on the blood sugar monitor gives us the same feeling as when you used to look at your test scores in college. That "hold your breath to see if you tried hard enough" feeling. We live with that same anxiety all day and night. Sometimes, we catch a break and the number is in range and we feel triumphant! Like we aced the final!

I started this blog because I wanted to connect with other parents caring for kids with Type 1 diabetes. I have met many great parents along the way. I have also used this blog as my therapy, many times. It has saved me in some of my darkest moments. Since my job is to be Rocco's pancreas, I don't get a physical paycheck each week. However, when people write to me and tell me they hopped on my blog and felt related to or connected with me, it fills me up so much! I tell my family those comments are like my "paychecks", because when people leave comments or emails about how my words and/or experiences have helped them, I feel like I just got paid!

I want to thank these parents for sharing their story through JDRF. It has helped me in so many ways.

So if you have ever reached out to me, to thank me for sharing my feelings, I would like to thank you. Your comments and insights help power me to keep writing and sharing. After watching this video, I know understand even more how good it feels to know someone else is traveling your same path!

I hope you enjoy the video as much as I did. Thanks again to Amy for sharing it. Gotta love Facebook!

Click here to watch the video!

Second graders learn about famous Americans

noreply@blogger.com (Shari) — Tue, 16 Apr 2013 15:20:00 +0000

Zeke had an on again off again fever throughout the weekend. Sometimes it was normal and sometimes it was as high as 103.6! I hate fevers. They scare me as much as low blood sugars. Maybe even more because at least I know the cause and treatment of a low. With fevers, ya just never know...

Anyway, on Sunday Rocco leans over to Michael and whispers in Michael's ear, "Is Zeke going to go blind and deaf because of his fever?"

Michael chuckles and answers, "No! Why would you ask that?"

Rocco says, "Because that's what happened to Helen Keller!"

Lol!

"A little knowledge is a dangerous thing." - Albert Einstein

Lending a helping hand...

noreply@blogger.com (Shari) — Sun, 14 Apr 2013 13:49:00 +0000

Hi everyone,

Today I have a friend who needs some help. Can you please go to the spot above, it's green, that says "What's your low?"

Scroll to the bottom posts and read what Tami wrote. If you have addressed the possible, long-term complications of diabetes with your son or daughter, please leave a comment. She and her son Caleb (and all the others who haven't talked to their kids yet about this) would appreciate any advice you have to give!

Also, don't miss what Moira said. It is inspirational, to say the least!

This community of parents raising kids with type one diabetes is so amazing! I want to say thanks to all of you for helping me and everyone who reads Everyday Highs and Lows! I couldn't get through this without you.

Love,

Shari

Grocery shopping at Target? Well, it's about damn time!

noreply@blogger.com (Shari) — Sat, 13 Apr 2013 23:27:00 +0000

It's official. I have completed my entire weekly grocery (& everything else) shopping trip at Target. Now, if I can stay out of every other store known to man throughout the week, my budget will be even... Hmmm, hopeful thinking but probably not...

getting ready for a great cause!

noreply@blogger.com (Shari) — Wed, 10 Apr 2013 03:13:00 +0000

I worried that Zeke had autism when he lined up all the toy cars in a straight line at preschool. But he didn't...

I worried that the boy's would have ADHD because reading to two squirmy toddlers was next to impossible. But, they didn’t...

I worried that the boys would struggle in school because I chose to send them to kindergarten at a "young five" age. But, they haven't...

I also worried that if Rocco became an advocate for a diabetes cure that he would be hesitant and uncomfortable. But, he isn't...

Actually, surprisingly, he kind of likes it. I should have known. Rocco is always up for an adventure. You could take him to an open field to pick up random garbage that had blown there and he would make up some story where he and Zeke were on a secret mission to clean up "THEEE WHOOOLE WOOOORLDDD!!!!" I should have known that being an advocate would suit him. Just another adventure in his eyes!

Our latest adventure is the JDRF Promise Ball, scheduled for early May. We are very flattered to be one of the families in the video they will show during the event!

Click here to see the post where we made the video!

In the video, my father-in-law, Rocco, a nice young man and two of the sweetest sisters you will EVER meet will explain what it is like to live with Type 1 diabetes every day. I instantly bonded with the mom of the sisters while making the video. When you meet another D-mom (as we like to call ourselves), it is pretty much an instant connection between kindred spirits. Warriors who are fighting in the same battle. This mom was wonderful! It was a double bonus because she is also a blogger and she shares her experiences of raising not one but TWO kids with Type 1diabetes. You can read her blog at www.naturallysweetsisters.com!

The Promise Ball is a black-tie event sponsored by JDRF to raise money for the Artificial Pancreas Project. JDRF has made the development of an artificial pancreas a research priority because of its potential to revolutionize diabetes care.

It is an honor to be able to share our story in support of this important initiative. Of course, we will still be focused on an actual cure, but this is a great next step until the cure is found. When the artificial pancreas device is perfected, it will directly impact Rocco's future, hopefully as soon as when he goes to middle school!

Plus, I get to dress the boys up in tuxedos! I know... not AS important but still super fun!

The other day we went to the tuxedo store and the boys picked out their styles for the tuxedos and the ties. Zeke asked for a long tie, of course (more professional and less attention drawn). Zeke does not like too much attention. Rocco opted for a bright green bow tie. He loves green!

It is very exciting to be part of a process that will benefit Rocco and tens of thousands of others with Type 1 diabetes! Thanks to Susan Kossik of JDRF for the opportunity!

Here is more information about the event.

Just click the picture!

If you would like to make a donation to Rocco's page, here is the link! Thanks for always being so supportive. Rocco really appreciates it! Me too!

This is the flyer that came in the mail. Rocco and his grandpa were on it!

This is Rocco getting it out of the mail! How fun!

How is he going to do all of this on his own?

noreply@blogger.com (Shari) — Thu, 04 Apr 2013 16:39:00 +0000

This is an example of how Rocco's insulin pump works.

"Wow mom, that port change didn't even hurt!" said Rocco. "Great honey! Sometimes we get lucky," I happily replied.

I should have known, but I didn't.

Until three hours later when this showed up.

You see, when I change Rocco's port, there is a little straw-like part that goes into his skin.

His pump administers a continuous drip of insulin, and we supplement this with an extra dose any time he eats, or when his blood sugar is high.

The insulin travels through the tubing and then gets absorbed into his skin through this straw.

The port is the part that sticks to the outside of his skin so the straw can stay inside his skin.

We have to change this port every three days.

When I changed it this time the straw-like part didn't actually puncture the skin. It just bent over. So he didn't get any insulin for three hours. The result was a super-high blood sugar reading of 503. His normal number should be around 100. This doesn't happen very often. Actually I don't remember the last time it did. But it does happen. It's just one of the crappy parts of diabetes.

When I pulled the port off, it looked like this.

It should have looked like this.

This meant we had to do another port change. This time it did hurt (just a little), so we knew it worked. Phew! "Sorry, Rocco honey!"

Within two hours, the insulin hit him his blood sugar was 90. Thank God high blood sugars are only temporary.

When things like this happen it brings me back into the reality and severity of our situation. It reminds me that Rocco can't go without insulin for even three hours.

I always wonder, "How is he ever going to do this on his own?"

Kids are forgetful. Boys can be absent-minded. He will forget to change his port or to administer an extra dose to cover a meal. I know he will. Adults forget so how is he going to remember when he is thirteen years old nd he is at his friend's house playing video games? Forgetting once or twice is not a show stopper, but he won't be able to forget too often because this is a 24-hour-a-day, seven-day-a-week job. Everything he eats has to be measured and accounted for. He will have to do each port change on his own during finals week in his dorm room. Where will I be? How am I ever going to let him go to college?

This unknown and scary part of diabetes sometimes creeps up on me. I know it will work out. I spend every day making sure he knows how to handle each situation when it comes up when I am not around as he grows into adulthood. But the bad part is once this happens, without my help, he is never going to have an “off day.” A mindless day where he doesn't have to be thinking all the time of carbs vs. exercise vs. stress vs. insulin. How will he do all of this conscious diabetes thinking while living in the dorms, having a girlfriend, going on a job interview, driving his friends to the prom, holding his first baby, or doing yard work? All of these daily tasks will require his full attention on his diabetes first and everything else will have to come second. During all of these major life events, he will still have to consider what his blood sugar number is. How? Seriously, how will he do it? I trust him completely, so my mind knows he will care for himself responsibly. But, my heart never seems to catch up to my head.

My brain knows if anybody can do this, it's Rocco. He has been responsible about his condition since he was three-years-old. My friend remembers watching him and his brother one time. He walked right into her house and told her "I have three skittles in my pocket in case my blood sugar goes low while I’m here." She still can't believe that this little three-year-old didn't just reach into his pocket and eat the damn candy! He knew even then that he needed that sugar in case of emergency. I know he will be fine. He will barrel through it just like he does everything else. I just wish he didn't have to...

Yes, some days this does creep up on me...

Easter voices from heaven

noreply@blogger.com (Shari) — Sun, 31 Mar 2013 01:28:00 +0000

My favorite holiday is Easter! I love pastels, bunnies and chocolate. I have wonderful memories of pretty dresses, white tights with white, patent leather shoes that sounded like high heels and Easter egg hunts!

Easter always reminds me of my Dad. He took us to church and there was always a light, sunshiny-sense of happiness in my house on Easter. Two years ago, my Dad came over for Easter. We had a nice time and he left. He died ten days later. It was hard, to say the least.

Yesterday, my friend asked me if I believe if people that have died reach out to us. I told her not sure how it all comes about but yes I definitely believe that.

Then today, as I do every year, I thought about my Dad a lot.

Around 7:30 tonight, I noticed that I had a missed call and a voicemail from that same friend. However, when I scrolled over to the list of calls this is what I found. E

My heart stopped and I smiled. Then, I cried. Then I said "Happy Easter to you too Dad."

I am sure the logical explanation is that I accidentally dialed his old cell phone number. I have kept it in my phone because it gave me the opportunity to trick myself that he is still here. I know it's weird but it comforts me. Until today, I forgot I left it in there.

I also had this fantasy of dialing it again and having him pick up (from heaven)! If I had one wish in my life besides diabetes being cured it would be that you could call people in heaven.

Anyway, so "Yes, my friend. I do believe people that have passed can and do reach out to you!"

Happy Easter everyone! Hope you get a sign from someone tomorrow too!

Drive or fly? The eternal question.

noreply@blogger.com (Shari) — Thu, 28 Mar 2013 17:00:00 +0000

So my BFF (best funny friend) decided to drive to Florida last week. She gave me permission to post our texts because 1) she is hilarious and b) she is nice to me! Here is how her week went! Enjoy!

On their way home... Here's where it gets REALLY funny!

After re-reading our texts, I have decided to stick them in a photo book and give it to her next year when she says "Should we spend the money and fly or drive again?" Lol! Too stinking funny!

Hope you all have a funny Spring break! Remember: you only recall the puke stories anyway at the Thanksgiving table!

Don't forget to "like" our Facebook page for all the fun! Www.facebook.com/everydayhighsandlows

Great Diabetes Travel Information

noreply@blogger.com (Shari) — Mon, 25 Mar 2013 13:04:00 +0000

Hi everyone,
If you are brave enough to jump in a car, train, bus or airplane this Spring for vacation, bravo!! I am excited for you and would love to hear all about your trip when you get back! Feel free to post about your experience.

I wanted to re-post this information to help anyone flying with diabetes or traveling to Disney. Feel free to contact my friend Robyn too. Even if you didn't book your trip through her but you are feeling a little nervous about how your Disney trip will go, send her an email. She is super nice and has a heart of gold. She will help you just because she wants any kid with "special" medical needs to enjoy all that Disney has to offer. She knows of secret spots for checking blood sugar or great spots to wait while your sone or daughter's blood sugar level even out.

Also, look toward the bottom for the TSA guidelines for diabetes. Enjoy your trip!

Like almost every mother out there, I have always wanted to treat the boys to a trip to Disneyworld.

I went when I was four and I still remember It's A Small World, the way the fur on Pluto's suit felt when he hugged me for the picture and the way my 1970's polyester dress scratched my first degree sunburned shoulders. I also remember the magical world that is Disney.

As much as I think of the magic, every time I have considered a trip to Disneyworld over the past six years, there are other thoughts that entered my mind:

• Screaming infants on a delayed flight

• Portable cribs in a hotel room

• Heavy double stroller.

• Hot sweaty babies.

• Toddlers having tantrums

• Grumpy four year olds.

• Blood sugars rising because of tantalizing treats beautifully displayed.

• Blood sugars falling because of walking for hours.

• Heavy $5 bottles of water.

• Pumps being taken off and put back on because of pools and water parks.

• Security for twin toddlers.

• Packing all of the diabetes supplies.

• Spending at least $4,000 in five days.

• Heavy backpacks filled with kid stuff.

• My own healing heart as I troop through 90 degree weather with two toddlers and a husband who doesn't like crowds.

So, needless to say, we never went. Anywhere. Any consideration of a family vacation also brought up the same thoughts.

Until last Thanksgiving, when we went to Texas to visit my brother-in-law and sister-in-law and their kids. You know what? It was awesome! The packing of the diabetes supplies wasn't bad at all. Blood sugars ran well. Family was awesome! And the boys LOVED their first flight!

This experience made me brave enough to research a Disney trip. We haven't booked it yet, but I was talking to my friend Amy about ripping the Band Aid off once and for all and she sent me this link:

http://family.go.com/parenting/pkg-type-1-diabetes/

It is Disney's on-line parenting site. Much to my surprise, they have a separate tab about Type 1 Diabetes! I have learned that Denise Jonas (diabetic Nick Jonas's mom) and Lilly Diabetes have teamed up with Disney to launch an area in the Disney world that is all about Type 1 diabetes!

Denise and Lilly also feature Coco the monkey, a new character that has Type 1 diabetes. Wow!! This is so exciting! Click here for the details:

http://www.diabetesdaily.com/edelman/2011/07/meet-coco-1st-disney-character-with-diabetes/

Another "diabetes mom" friend told me that when you book on 1-800-Disney, all you have to say is that your child is diabetic. Then, they start asking you his or her insulin regiment, insulin type, special dietary requirements and all sorts of other questions on taking care of your child! Wow! Thanks Nick and Denise Jonas and the folks at Lilly! I am less scared to go now!

Once I actually book the trip, I will blog the entire experience and keep you all in the loop on the pitfalls and exciting things that happen to us during the trip. Stand by...

Anyway, let me know if you order anything from Cindy or if you go or have gone to Disneyworld. I would love to hear about your experiences!

Here are three other wonderful websites I found that you may enjoy!

http://www.diabetes.org/living-with-diabetes/know-your-rights/discrimination/public-accommodations/air-travel-and-diabetes/

http://allears.net/pl/diabetes.html

http://www.dlife.com/diabetes/lifestyle/traveling_with_diabetes/disney_with_diabetes

Robyn at Travel with the magic travel agency says she knows everything there is to know about diabetes at the park! Her husband and her son both have Type 1 diabetes so she knows first hand the perks and pitfalls of traveling to Disney with diabetes. You can see her website at www.travelwiththemagic.com and you can reach out to her at Robyn@travelwiththemagic.com.
Tell her you got her name from www.everydayhighsandlows.com and she will treat you extra specially!

http://www.tsa.gov/traveler-information/passengers-diabetes

http://childrenwithdiabetes.com/clinic/flying.html

Never in a million years!

noreply@blogger.com (Shari) — Mon, 25 Mar 2013 03:39:00 +0000

I used to scrapbook a lot. I loved it. When I went on the scrapbook weekend trips with my girlfriends, it was always a blast except I never had kids to scrapbook. At that time, I was desperately trying to have a child but it just wasn't working. I always ended up making scrapbooks for family members or friends.

Then one day, it finally happened! I got pregnant! I was able to buy and scrapbook with all of those baby stickers I had been wanting for the past five years!! I even got to buy the coveted "twin" stickers that everyone always wanted to buy but only a select few of us were lucky enough to get.

Then the boys came! What a delight. While they took their sweet, silent, three-hour infant naps, I got right to it! I scrapbooked every day and made it to their six month page. I had tons of pictures and each page was fun to do! I made it their six month page by the time they turned one. Then. They. Started. Walking....

The boys are now seven and I am still on their sixth month page... Ummmm...

My scrapbook supplies are scattered all over the place due to needing only certain things for school projects or just to keep the boys busy along the way. I figured I would get back to it in time to finish the year one book by high school graduation and I always have envisioned making a library of digital photo books with the first through eighteenth years.

So, if you told me twelve years ago that one day my son would be using those same supplies to make a scrapbook to use as a tool to speak to his congressman about his life with Type 1 diabetes, I would have fell off my seat laughing!!!

But, here we are...

We had Zeke make one for fun too!

Watching the boys use the supplies brought me so much joy! To do so for such an important cause made me even more excited! What a strange turn of events my life has become.

Here is how the scrapbook came out.

When we go to Washinton, Rocco will be able to give his Congressman this scrapbook and use it as a tool to describe what it's like to live everyday with type 1 diabetes. I am glad the Children's Congress committee is having us do this so it's not awkward when we meet him. I think it will inspire conversation and make it not like a weird uncle kind of conversation. "Hello, little boy, so, you are in second grade, huh?" Haha!

I am really looking forward to our trip and I am becoming more and more convinced that this will really be inspirational for Rocco later in his life. Fingers crossed!

iPhone: blessing or curse?

noreply@blogger.com (Shari) — Wed, 20 Mar 2013 01:57:00 +0000

It all started out with one, little birthday invitation.

Click here to see that story.

Then, there was "neighborhood freedom."

Click here to see that story.

Theeennnn, there was the snowblower...

Well, you can kind of see what happened here.

Then there was the $100 that each of the boys recently got from their aunt and uncle. It was supposed to be for toys, but since Rocco had left his cell phone on the driveway, and then it snowed, and then Michael used his snow blower, Rocco had to buy a new one. Don't let me fool you; I'm a softy. Verizon had a sale on iPhone upgrades for $30! Another flip phone would have been free, but I figured for $30, courtesy of Rocco’s aunt and uncle, we could get the iPhone for them to share and now I won't have to get them an iPod! Genius...

Rocco was recently chosen to be a delegate to the diabetes Children’s Congress in Washington and was featured in a JDRF fundraising video and has gotten a lot of other diabetes attention lately.

So.... This one

deserved some loving too, so he also got a $30 iPhone. Even though I was going to make them share the one phone, my father-in-law wanted to treat Zeke! My father-in-law prefers his flip phone and gave Zeke his upgrade to get an iPhone. It seemed extravagant to spend so much on seven-year-olds so to justify it, we turned off the Verizon 3G capability on both phones so we won’t have to pay an additional $30 per month. Wi-fi will do for now. We turn Rocco's back on when he needs to be away from me (ex. Birthday party, playing down the street, etc...)

However.... Now my world looks like this...

And it is sounding like this...

"Hey boys, will you wash your hands for dinner, please?" No response. Five minutes go by and all I hear is grumbling about who stole whose stuff in a game called Mine Craft that they play together on their phones while sitting right next to each other. This world is becoming so strange.

"Boys. Wash your hands." "Okay," Rocco says dutifully but not really hearing anything I say...

"BOYS!! WASH YOUR HANDS NOW!!" "Gosh, Mom! You don't have to yell..." Grrrr....

Then there was the church incident. Let's just say Rocco wasn't playing a Jesus app in his pocket when he snuck his phone into church this past Sunday.

Seriously! Did he not think I couldn't see it glowing? Ha!

Reminded of when they were two and they would hide under blankets in the middle of the living room and have me "find them". I used those moments as a way to cage my toddlers while I surfed the net. "Nooooppee... Mommy can't find you yet... Man, you two must be good hiders!"

So there are reasons that the kids having two iPhones is a curse.

However, this new phone thing is also a blessing. These phones can do anything!! Zeke can learn to play the piano, practice his spelling, and learn the Gettysburg Address. I'm pretty sure if I dug deep enough, I could find an app that teaches him how to fly to the moon! Or at least explains it to him with videos and graphs. The technology is truly something that Einstein, Thomas Jefferson, and Thomas Edison would marvel at and spend all day playing with too. It would blow their minds.

For Rocco, this phone is a blessing and a lifeline.

He can check his blood sugar using his phone! Check this out. In my favorite place called the Apple Store (my dirty little secret is that I am a tech junkie! Shhhh!!), I recently spied a blood sugar monitor that attaches to the bottom port of your iPhone!!

Jackpot! But it was $100... So, I never got it.

I reached out to a friend of mine who sells diabetes supplies and he told me that the company that makes this amazing little toy has a special right now and you can get one of these devices for $4.99!!!! What? I wanted to believe him, but I felt like it couldn't be true.

But it was! Here is the link! Wait though. Don't order it online yet. After you check out the link, come back to the post because I will share with you an easier way.

So, I went online and ordered two of them. One for Rocco's new phone and one for mine.

When they came in the mail, Rocco ripped open the box. We hooked them to both of the boy's phones, Rocco checked himself and they WORKED!!

Super cool. We felt so high-tech! So space age! Take that George Jetson!

Zeke said, "Now, I can check Rocco when we’re playing outside and he feels low!" Rocco replied, "Hey thanks Zeke!" I, of course, kissed them both!

A couple of days later, I went to Walgreens and I saw them there too for $4.99.

I wish I would have known and not paid shipping. So, I am telling you, just go to Walgreens. The deal expires on March 30, so don't delay. If your kid has an iPod or iPhone, it works on both. However, then go online after you buy the meter at Walgreen's because they give you a discount card to buy 50 test strips for only $20. If you use a specific kind of blood sugar meter for your child's pump, get this one as a backup. That's why I got them. Plus, I have had friend's with teenage diabetic kids and something tells me they are on their phones all day anyway, so why not give them a real reason to use it? Haha! I also figured that during the summer, it might just be easier to use this one for myself. The day we got it, I attached it to my phone and it stayed on all day. No problems.

Another reason the iPhone is a blessing is because Michael has discovered an app called "Find my friends." He linked the app to both iPhones so we can tell exactly where the boys are when they’running around the neighborhood. GPSing your kids is just fun. But on a more serious note, when your kid could get too blood sugar while playing a few houses down, being able to GPS them provides some real peace of mind. Also, if Rocco feels too low to walk home, he can call me and I can come help him. It's kind of like giving him some freedom while also doing a virtual helicopter over him through GPS. Not much different than the video baby monitor except now his crib is our neighborhood. Oh, how they grow...

Finally, truth be told here is the best blessing of them all! When mommy needs a timeout from the noise, farting, giggling and eating, I can encourage all three of my men to use their devices to play together in the alternative world of Mine Craft. Once they are involved, they only talk to each other. It's kind of like playing a family game of Monopoly, right? Well, kind of...;)

All of this technology makes me feel that even if we don't yet have a cure for these diabetes kids and their parents, at least we are making their lives a little less attached to their disease.

Long live Apple!

In case you were wondering, I am not getting paid by Apple, iBG Star or Walgreens(I wish!). I just really like all three and thought you or your child might too! Enjoy!

For another funny story about being iDdicted, click here.

If you haven't already, feel free to get updates on our posts by "liking" our Facebook page.

Www.facebook.com/everydayhighsandlows

If you already have, thanks!

Check back in the next couple of days for pictures of our new puppy!! So stinking cute!

The performance review

noreply@blogger.com (Shari) — Tue, 12 Mar 2013 17:42:00 +0000

Every three months, we visit the office of our endocrinologist. While we are there they monitor Rocco's growth, his blood pressure and his A1C. An A1C is a test that tells you the average of your blood sugar numbers over the past three months.

If you care for a child with Type 1 diabetes, you hate this test. Usually... Sometimes, you love this test. Either way it turns into a report card on how well you are caring for your child. None of us parents want to think about it that way and we constantly try not to think of it that way, but we do. We can't help ourselves. It is a terrible feeling when the number is bad and an incredible feeling when the number is good.

Diabetes is hard, it doesn't play fair. Blood sugar numbers are the judge and the jury. They change because your child runs, eats, watches tv, grows, gets nervous, gets really happy, exercises, or doesn't exercise. These are just a couple of examples. There are more. It is unpredictable to say the least. The only predictable thing about it is: it is always changing.

So, to chase an ever changing, uncontrollable number every day can be frustrating. All I, and other parents, want is to get a good A1C. We wish for it. We try for it. We pray for it. We stay up nights for it. We go into schools for it. We sit in gyms for it. We sit in birthday parties for it. We helicopter over our kids for it.

So, on the big day of the appointment, it is scary. I always feel like it is my review. Since my job is to be my son's pancreas, that test becomes my performance review. My report card, of sorts.

Some of the reports have been bad and some have been great. Today, was a good (enough) one. Here is how it went.

Rocco wanted to fill in the registration sheet by himself for the first time. My little boy is growing up!

I mean really growing up.

Rocco LOVES to see how things work! Here he likes to watch the blood pressure machine. Plus, he likes the squeeze feeling of the cuff.

This is me. Unshowered and nervous. I normally would keep pictures of myself looking like this out but in efforts to keep it real, I wanted to show you the look on my face. People that know me well know that this is my "I'm pretending to entertain my son by letting him take my picture while I'm dying inside waiting for the doctor to come back and give me my review" face. It's not pretty but it's true... Lol!

One more picture of a happy, healthy boy on the way out. I asked him if he wanted a sticker. For the first time, he said, "Nah." More dying inside... More growing up... Sigh...

After these appointments, Rocco and I have a tradition. No matter what the number is, we celebrate with carbs! Good, gooey carbs! Carbs that we normally don't eat! Last appointment, we had pancakes! With real syrup!

We both work very hard for three months trying for the magic number so giving ourselves a treat to celebrate our efforts, is fun! I also feel that when he gets older, I don't want to blame himself if the number is not good. I want to train him to look forward to going to these appointments. As an adult, taking care of himself is going to be hard enough. Why not make a possible, terrible appointment a positive thing? Even if he knows the number isn't going to be good, I still want him to want to go to his appointment. Diabetes burnout is a real thing. I know Rocco will get it. I know there will be moments when he won't care for himself well. As anybody who has ever joined Weight Watchers, making it to a weigh in meeting after spending a week cheating is never easy. The endo appointment is kind of the same thing.

So, if allowing himself to "cheat with a treat" after his appointment will help him get in the car and drive to his three month appointment, so be it. Plus, like Weight Watchers, after the weigh in and the A1C test, the hour following the appointment is free! Calories and high blood sugars don't stick! Plenty of time before the next check! Ha!

We started off with Panera soup. Broccoli cheese is low in carbs.

Then, we get to the good stuff! We both raised our eyebrows in surprise when we found out our mutual cheat treats were 62 carbs each! Hehe! We both giggled because it felt good to be bad!

Then, we played our favorite game: "Where do they work?" We like to look at people in the restaurant and guess their jobs! Rocco comes up with some doosies! This day's selections were shoe salesman, an Olympian, pet store owner, and typewriter girl. Ha!

Who knows? Maybe these treats and fun times are more for me than for my boy. Haha! Either way, we both look forward to them now.

On the way home, I asked Rocco a question I have never dared asked him.

"Rocco, do you feel unlucky or lucky that you have diabetes." I asked.

"Lucky!" he answered excitedly.

"Why?" I asked.

"Because I get to get out of school and be alone with you mom!"

Mission accomplished!

Rocco goes to Washington!!!

noreply@blogger.com (Shari) — Sat, 09 Mar 2013 16:42:00 +0000

We have some super exciting news!!!

Rocco was recently accepted to be a delegate to the Children's Congress in Washington D.C! He is one of 150 delegates chosen from 1,500 applicants across the U.S. who will urge Members of Congress to continue funding of Type 1 diabetes research. The goal, of course, is to find a cure, sooner rather than later!

In July, Rocco and I will make the exciting trek to Washington, with the other Type 1child delegates, to spend three days lobbying for renewed funding of the Special Diabetes Program. The Special Diabetes Program is an ongoing congressional research initiative aimed at the prevention and cure of Type1 diabetes. Our trip is funded by JDRF; Michael and Zeke will also make the trip, at our expense.

We are honored to be blessed with such an amazing opportunity. I will blog every day (probably a couple of times a day) to share the experience. I am particularly excited to have Rocco see the inside of the Capitol Building. What an amazing experience!

When I was deciding whether we should apply, I did a lot of soul searching. I wanted to make sure that Rocco would be okay with such a big responsibility. Could he speak clearly about what it is like to live with diabetes as a kid? Would he be overwhelmed by this experience at such a young age? Would he say something silly if he met the President? Lol! Ya never know...

Regarding his readiness, Michael and I have raised both Rocco and Zeke to be appropriate in front of adults. We have tried very hard to give them a big picture sense of the world, as best we could. We also have taught Rocco that while Type 1 diabetes can sometimes seem daunting, it doesn't need to be overwhelming. No sense in hating it, because hating it could eventually eat you up. Rocco understands that although we would like it go away as soon as possible, he can still experience life without limitations, as long as he is responsible in monitoring his blood sugar.

Over the past year, I have tried to teach him another life lesson. I want him to understand that if you are handed a disease but you also have a strong voice and a smart mind, you have the responsibility to help end your disease. In whatever way that makes you happy. It doesn't matter if he sends in a few dollars once a year or speaks on Capitol Hill.

Rocco seemed ready, but I still wasn’t sure. Then I watched this video.

I couldn't help crying. These kids were given the chance to feel control over their mostly uncontrollable world. I said to myself, "I want that for him." I felt the overwhelming urge to help fight this terrible disease. Bottom line: i knew my fears should not limit him. We decided to apply. I knew he may be young but if there was anyway to grow up, this would be a great way. What the heck!

To our surprise and delight, he was accepted! I am extremely excited to have him feel empowered to help millions of Type 1 people at such a young age. If nothing else, I want to teach him the word "empowered!"

Last night, I decided to explain it to him. I showed him the video. I explained that after doing this he will look back on the experience and feel good about it even when he becomes an adult. I told him that one day he will go for a big job interview and think to himself, "I lived with Type 1 and I spoke on Capitol Hill when I was seven, I can totally get this job!"

After my explanation, he looked distraught. I worried that I overwhelmed him with too many adult thoughts. But I should have known better because he said, "Yeah, but mom, this is going to stink because when I am big and I am up in space, if I want to eat something, I am going to have to unzip my space suit, take out my pump, and give myself insulin. It's going to be a giant pain."

I laughed and kissed and hugged him hard. All my fears about overwhelming my child disappeared. Rocco the astronaut is ready for zero gravity and for Washington D.C.!

You may be wondering how this has affected Zeke. Well, first let me admit that I bought him an iPhone yesterday (ha!) since Rocco has one to check in with me about blood sugars.We always try to make sure that Rocco’s Type 1 doesn’t make Zeke feel left out. Making the trip to Washington with Michael is also a good move. Apparently he's ok with his brother getting all this attention, based on this recent exchange. "Mom, I don't want to go to Washington," he said. "Why, honey?" I ask breezily while dying inside.With a devilish grin, he said, "Because then I could stay home and eat all the candy!"

He also told his aunt and uncle, "My dad and I will get to see where they make money in Washington while Rocco and mom are at a bunch of borrrriiing meetings!"

So it looks like both my children will be just fine with our adventure!

We are honored that Rocco has been chosen to tell our representatives what it’s like to be a kid with Type 1 diabetes. And I will have the opportunity to relate what it's like to raise a child with Type 1. I will also do my best to represent the many other mothers and fathers out there who are living my same life every day. I’ll keep posting along the way to let you know how it goes.

Here is a copy of the letter we sent:

October 11, 2012

Dear Member of Congress,

Imagine if you were told that you will develop Type 1 diabetes sometime in your lifetime. You wouldn't know the exact moment you will get it, but you know it's coming. Would you want scientists to keep working on a cure? Now imagine the same scenario but the doctor tells you it is your child that will get diabetes. Now, that funding and research seems more urgent, doesn't it?

Our story is similar to this, however, my son already has Type 1 diabetes. Since he is only seven years old, I am speaking on his behalf. Recently, I asked him why he would want diabetes cured and he simply said, "Because then I wouldn't have to get my blood sugar checked during recess. It takes too long and I miss the fun part of school." Right now, missing recess is the main concern he has about his life-altering disease. With your help in funding research toward a cure, you can ensure that other concerns about his condition will never be relevant for him.

Rocco's story begins at 22 months old. His diapers were filling up much more frequently than those of his twin brother. At the waterpark, I noticed his swim suit was falling off from significant weight loss. He was always thirsty. His behavior had changed some. My happy little guy seemed to be irritable and vacant. This was troubling. It just didn't seem to fit. Aren't all one-year-olds usually happy? At a routine doctor visit, I mentioned these symptoms. The doctor decided to test for diabetes, although she assured me he was probably fine. She tested his urine and came back into the room with tears in her eyes. "I'm sorry but your son has Type 1 diabetes," she said.

While in the hospital that same day, my husband and I watched Rocco as he slept so peacefully in the baby-sized hospital bed. As he lay there, he had no idea that his life had changed irrevocably. He had no idea that he would have to endure lancets poking his finger 6-10 times every day for the rest of his life. He had no idea that he would have at least four shots every day for the next six months until he received his insulin pump. He also had no idea that one day he might have an opportunity to speak to elected officials as a delegate to the Children's Congress, to change his and 26 million other people's future. He had no idea as he slept, while his parents and a team of people watched over him, that one day he could be only normal again. Normal without Type 1 diabetes. Not just normal with diabetes.

Rocco is now seven years old. He is a natural leader. He likes fishing and frogs. He is compassionate. He says he will one day be a sea turtle rescuer. Even though I agree rescuing sea turtles is a very important job, it makes me wonder what else he could become if he was empowered with the idea that he was able to speak on Capitol Hill at such a young age. What he could become knowing that he aided in the "rescue" of 26 million Americans and generations more who share his diagnosis.

Then, I asked myself the same question, "Why do I want a cure for diabetes?" I want him to be free of the feelings of the high blood sugars and the low blood sugars. I want him to be able to take his insulin pump off and put in the drawer with the lost teeth and finger paintings. I, also, want him to eat freely in his life; to never again count another carbohydrate. I want him to be able to bring cupcakes into school for his birthday. I want to not hold my breath when he indulges in the sugary treat.

But more importantly, I want him to live without the long-term threat of heart damage, kidney disease and blindness. Rocco is ten times more likely to have a heart attack or a stroke than his twin brother. These are only a few complications of diabetes, devastating to the victim but also prohibitive in terms of U.S. health care costs. With continued funding toward a cure, my son and our family have hope to eliminate all of the above within his lifetime. If the funding stops or slows, that hope is lost. Wars have been fought and won with hope. Diabetes can be cured with hope and with your help.

As parents of children with Type 1 diabetes, we spend our days chasing an in-range blood sugar number. Some parent's only wish is to have their children grow up and be productive members of society. Some parents want their children to grow up and make a difference in the world. If this was your parent's wish, they got lucky. You have the power now to make a difference in the world of millions of Americans. The parents of a child with diabetes want these things for their children too.

My husband and I are trying to teach both our sons that every problem comes with a solution. In efforts to lead by example our family is currently involved in many outreach awareness activities. I volunteer for JDRF as a parent mentor. This allows Rocco to become a "kid mentor" and share his experiences with other children who are newly diagnosed. I also write a blog that chronicles the daily highs and lows of raising one child with diabetes and one without. It has been read over 35,000 times, in more than 40 countries. Our family has chaired meetings with teachers, administrators and classmates, to explain diabetes management. Also, we are currently creating a children's book about diabetes. It will be a book of questions made up by children. Both of my boys will answer the questions. This will ensure it is told from the perspective of not only the child with diabetes but also from the sibling's perspective. Profits from the book will be donated to the Special Diabetes Program.

Soon, you have the opportunity to make a difference. You get to change the lives of 8.3% of the population. You can choose to stop the burden of $174,000,000,000 spent on diabetes in the United States alone. That is a statistic from 2007. That number is expected to triple in the next twenty-five years. These numbers are staggering. However, you can help stop this madness. You can choose to continue the funding of JDRF and the Special Diabetes Program (SDP).

The Special Diabetes Program has sponsored research that has identified the genetic markers of people who are at risk for developing Type 1 diabetes. Intensive, ongoing SDP research seeks to identify environmental factors that trigger the onset of Type 1 diabetes.

When I asked Rocco if he would want to talk to some important people and ask them for money to end diabetes, he said, "Would they end it for everybody?" I nodded. He said, "Then, yes!"

That's the kind of kid he is.

Thank you for your consideration.

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We are having another girl!

noreply@blogger.com (Shari) — Sat, 02 Mar 2013 02:17:00 +0000

Ever since I wanted to get pregnant back in 2000, I imagined my life with a little girl. In my mind! she was three, blonde and reading a book in a cute, Pottery Barn Kids pink chair. At my first ultrasound, I found out my unborn children were BOTH boys, I was kind of disappointed. Of course, I was completely hormonal and pregnant with two babies. So, you have to give me a little bit of a brake. Also, once these two little perfect humans came out, I was madly in love and now I wouldn’t have had it any other way. Silly hormones!

However, I continued to secretly wonder, “Would I ever get her?” It took us five years and three in-vitro fertilizations to get the boys! How in the heck would I ever get pregnant again?

In the long run, as we all know now, I didn’t. After the heart situation, that ship had sailed. The doctor said if I ever got pregnant again I would probably die. Talk about drama! Michael and I talked many times about adoption or even surrogacy but we have been so busy with our two angels and our life always seemed complete.

So, a couple of weeks ago, we made a very, huge family decision and decided to hire a surrogate to fill the missing link in our family unit!

Meet my surrogate!

She is currently pregnant with my new little girl who is expected to arrive on March 15! Of course, her mommy will need to keep her until the beginning of May but there are puppy visitation days and I will take lots of pictures and post them!

Our new little bundle of joy will look something like this!

See! She's blonde just not quite what I imagined. Something tells me she will have a book in a cute Pottery Barn chair but she will probably be eating the book!

We are so excited to have her in the family but we have one major problem: we need to name her. I wanted to name her Love or Happy but Michael vetoed those. Ha! He said her name had to be less "lovey" or "happy" in case he ever takes her out with the guys. However, most girl dog names sound like stripper names. Hmmmm.. Zeke likes Honey because that was the name of Abe Lincoln’s dog. Rocco said he likes broccoli or peas... Rocco!

So far, the name we all like, but are not yet convinced of, is Shay. My friends in high school used to call me this. It brings back happy memories of cars that were on the brink of failure and Depeche Mode!

So, I need your help! What should we name her? Please, click the word COMMENT below and give us a cute or cool girl dog name!

I will post the results and let you know which name we chose as soon as it's decided! Thanks for being part of our family and for your help!

My people!

noreply@blogger.com (Shari) — Wed, 27 Feb 2013 23:00:00 +0000

Like many people, I hate catty women! Or catty people for that matter. I have spent my life avoiding women who have nothing better to do than to gossip about one another.

Above all else, I value trust in a friendship. I am fortunate enough to have found many friends throughout my life who also value trust. They can tell me the most intimate details of their lives and I can share mine. We know it doesn't go anywhere after we share.

So, when I am introduced to a new group of women, I am always leery. I wonder if it will be the kind of group where they roll their eyes at the person who just walked out of the room. The kind of group where they call each other after a get together and say "Can you believe she said that?" I hate that group. I avoid that group.

About two years ago, I was invited to join a group of moms who care for their Type 1 diabetes children. They meet for breakfast once a month. The group is sponsored by JDRF. When I considered joining this group, I did what I have done for many years. I went in with a full-armor suit of skepticism.

To my surprise, they were a delight! These women talked and shared. They instantly threw out their most scary thoughts about the past month. The group listened with compassion and not judgment. To be helpful, they shared their own experiences. They offered positive solutions to help the struggling moms. Halfway through one of the early meetings, I whispered in my head, "These are my people!" I felt like I had found women each of whom served as a pancreas for a diabetic child. Women who knew what it was like to be married to your cell phone when your Type 1 child is away from you. They were honest about making mistakes such as giving too much insulin or not enough. Judgement calls that are made on an hourly basis. Early on, one lady had to leave early and no one talked about her after she left! This is always my telltale sign if I am involved in the wrong group. Another lady brought in extra diabetes supplies she had and gave them away -no charge!

When a cell phone rang, the group stopped everything and waited politely for the latest blood sugar reading of the child on the other end. When the mom hung up the phone, all focus was on her and her child. "Is he ok?" the leader of the group asked while we all held our breath. "He's fine! Just a kid in his class brought an unexpected birthday treat and I had to count the carbs." Everyone smiled around the table, relieved, and the conversation turned to dealing with unexpected treats. We started throwing around carb counts for everything from rice crispy treats to cupcakes.

Yes! Yes! These are my people!

The group reminded me of a herd of elephant moms. I know, I shouldn't use that reference for a bunch of women - LOL! This was a group of mom elephants caring for their babies. In an elephant herd, when one of the children is orphaned, the other female elephants take over in caring for that baby.

I sensed from the concern over the phone call that these women were my fellow elephant sisters!

It has been three years of knowing them and meeting them once a month and I love them! I have two of them on Rocco's emergency contact list. Enter elephant care. I know that if I were ever stuck, these women would swoop in and take care of my son(s). As I would for them! We have covered the phone for someone who had a job interview, we have shared supplies, and, I am happy to report, I have never seen an eye roll yet!

When a new child gets diagnosed, we lovingly invite his or her mom into the group! We try really hard not to scare a new mom with our diabetic speak of all the scary scenarios that could happen. We show the new ladies love, because the first couple of months can be very scary.

The best part is when we get together several times a year with the kids. Seeing other kids living a happy, healthy and normal existence with the disease is encouraging to newly diagnosed children. Watching the siblings of the diabetic children patiently waiting for the blood sugar number to pop up on their sibling's monitor makes this whole crazy world seem a little more normal. For everyone - siblings and all!

So, thank you ladies for being such a trustworthy, support group for me, Rocco and Zeke! I cherish our friendship and couldn't live without you guys! Maybe one day we can even get the husbands involved!

World, meet my people! Aren't they cute?

Shoes.com and Target discounts for Spring!

noreply@blogger.com (Shari) — Mon, 25 Feb 2013 18:11:00 +0000

Spring has sprung! Well almost...

Nothing says spring like shoes! Great fun shoes!

They make us think of summer lazy days at the beach or wearing linen to work! So, because you are a loyal reader of Everyday Highs and Lows, here is a 20% off coupon for Shoes.com plus free shipping!

So, feel free to give our favorite season a little nudge and treat yourself to some shoes like these!

I got these pictures off of their website!

Definitely love these for capris!

Great for work or for that upcoming baby shower!

Love for work or your daughter's dance recital!

These are super hot right now! Perfect for running to Target! If you want to really be in style this season. Click here to check out Target's newest designer and get free shipping on anything spent over $50!

These are great for jean capris or simple cotton black dress! Just fun!

Ok, enough teasers. Here is the link!

Don't get caught looking like this in the Spring!

Remember, anything you buy off of this site helps Rocco and I raise money for diabetes research! Thanks for helping!

Like us on Facebook at www.facebook.com/everydayhighsandlows.

Type 1 diabetes and Chuck E. Cheese

noreply@blogger.com (Shari) — Sat, 23 Feb 2013 16:50:00 +0000

Dear Chuck E. Cheese, I hate you!

We have been invited to parties at Chuck E. Cheese before. They didn't go so bad, so I decide to try another one. We went today. Here is how it went...

First of all, we had soccer practice at 9am. Rocco wakes up with a blood sugar of 177. Good enough. Feed him standard blueberry Nutrigrain Eggo waffle (my trusted friend), an egg for good measure and milk. Give him insulin. Struggle to put weird nylon soccer socks on his feet while making sure I don't get overly frustrated at their tightness and yell at the tiny human I am pushing them on. Talk Rocco into going to his final practice. Bribe him by telling him he may get a trophy if he goes. Rocco loves a trophy! Why can't my kids just like sports for sports sake?

Get to soccer. He runs. Runs some more. Get done with soccer. Check blood sugar - 62. Needs sugar. Burger King is right in front of Kmart, which is the place that holds the coveted Lego set for the birthday gift for the Chuck E. Cheese party. Rocco sees a mini-Cinnabon. Begs me. "Please! Please! Please! I have never had one." Look down at poor kid who feels slighted in life,with his pleading hypoglycemic eyes, and I cave. "Sure!" Look up carbs - 45. Good Lord! Eat. Give insulin.

Go to Kmart. Buy Lego set(s). Not one but two, because Zeke is also invited. Go to library. Get George Washington and Abe Lincoln books for Famous American book reports. Pay $13 in fees from forgotten Christmas break books. Ugh! Feel ashamed but happy to help library, considering that just one of the books we are now taking out would have cost at least $13 at Target. Would rather give money to library than Target. Choose to feel good about $13 mishap. Life's too short to blame yourself for stupid things. Moving on...

Come home to gather up Zeke, who has been home with daddy all morning watching TV and eating junk cereal.

Go to Chuck E. Cheese party. Ugh! Just the smell of the place makes me feel flu-like! Just keep moving through the germ filled stranger kids and pretend that you like this. Decide to eat at Panera next door while they are there. More quiet and close enough to helicopter over during the party.

Before I leave for lunch, check his blood sugar. He is 54. Soccer practice exercise starting to hit him. Crap! Give a juice box and a tablet. Yell at myself for feeding my kid crap all morning. Talk myself off the ledge while I wait for juice and tablet to kick in. Life's too short to blame yourself for stupid things. Check again in ten minutes. 110. Perfect! Time for Panera. Explain diabetes to the party mom. She has had parties previously, and we have had her son in Rocco's class for the past three years, so she pretty much knows the drill. But because of the "pretty much" part, I tell her I will helicopter back in 45 minutes when they serve the food, to give Rocco his insulin.

Go to Panera. Try to concentrate and write for 40 minutes. Order salad because I got a Cinnabon at Burger King too! Due to recent paczkis, shamrock shakes and Girl Scout cookies, I feel more round than usual. Think about joining Weight Watchers but thought quickly leaves my mind as I realize I already have too many thoughts of counting carbs that infiltrate my life. Thinking of counting food points for myself seems too much for today. Just promise to eat more salads. Life's too short to blame yourself for stupid things.

Go back to Chuck E. Cheese. Crap! They started the food part early.

Pizza already devoured. Something dark brown in all cups. Yep! Coke. Straight up Coke. One of the only things I sort of like about good ole Chuck E Cheese is that they have caffeine-free,Diet Coke available.

Grab Rocco's cup and go fill it up secretly with the caffeine-freeDiet Coke. Come back nonchalant, so the party mom and Rocco won't notice. Feeling like crazy, over-bearing, over-protective mom - yet again. Wonder what nearby moms think of me. Decide to forget worrying about something I cannot control. Life's too short to worry about... You get the point. Diet Coke replacing regular Coke saves us 45 carbs.

Just as I breathe a sigh of relief, I hear, "Who wants cake and...." wait for it.... "ICE CREAM!!"

And the crowd goes wild! Roooooaaarrr!! I deflate into a person about three inches tall. I can handle the pizza, I fixed the Coke. I was going to super dose him for the chocolate cake with extra chocolate frosting. But the ice cream and the screaming made me wanna yell, "OH, COME ON!!!" Have visions of losing it and getting up on stage and punching the stupid mouse in the face!

So I get mad at diabetes and grab Rocco’s pump and try to preempt all the sugar while they cut the cake. I dose Rocco for 75 carbs, which should cover the pizza, the couple of sips of regular Coke he drank before I got there, the chocolate cake and yes, the ice cream.

Watch him eat half of the ice cream, take a bite of the cake and then someone yells, "Who wants to play games?" Rocco jumps up and yells "ME!" and almost runs off,except I grab him and say, "You have to eat your cake and ice cream." He gives me the face like he is going to puke and says, "I don't really like it." OH MY GOSH! Any other time, I would have kissed him and the angels that guide us daily. Except now what?

He has at least 35 extra carbs worth of insulin in him.

So, I go back to the pop machine. Throw away the caffeine-free diet and fill the cup up with none other than, wait for it...fruit punch!! Try to make him drink it. He takes three big sips and gives me the puke face again... Darn it!

I decide to stay at the God-forsaken place and hover. I sit in a booth and try to look busy, but my mind is racing and I’m watching for him to go low. I only have about another half hour in the stupid place, and I feel like he should be ok as long as I stay. So much for writing time.

As I sit, I remember I have another child who’s at the party. Zeke!

I go over to him, try to make up for being distracted and give him a kiss on the cheek. RIGHT IN FRONT OF HIS FRIENDS.... His embarrassed seven-year-old self wiggles away. I die a little inside. Friends don't notice. Thank God.

Forget it. I give up. I would like to go get a one-hour, full-body massage, please!

Finally, the stupid party is over and it is time to cash in the tickets. You know, those precious tickets that they "earn" while playing the games with the flu-filled coins? Pretty fun, except feeding them into the munching machine to get a toy/treat coupon takes about an HOUR AND A HALF! I see one of Rocco's friends help him feed his coins intothe machine.

So I take the opportunity to help my poor neglected one. Except as I get done with Zeke, Rocco returns from the toy counter with a roll of smarties, glow-in-the-dark vampire teeth and...

wait for it........ COTTON CANDY!! OMG! He is so excited. I am hoping he doesn't see the look of panic in my eyes as I try to eyeball the bag for the carb count.

Finally get the two of them in the car while they are playing with the plastic, rainbow slinky (which breaks on the way home). I decide to check Rocco AGAIN and to my delight he is 124! Yippee.

He begs me to have some of his cotton candy. I cave AGAIN.

I chalk it up to a crappy food day and start to plan the vegetarian dinner we should all

have for dinner. "Screw Weight Watchers!" I say in my head as I shove a wad of cotton candy in my mouth! Part because I feel as if I deserve some sort of treat (again) for the madness I just experienced. But then I justify it by realizing if I take a wad he won't have an extra wad to eat = less carbs for him. Thankfully, halfway home I hear the bag rustle loudly. I turn to see him closing it up. He ended up only eating about a 1/3 of the bag

,which amounts to only about 15 carbs. I look from the bag to his face and he gives me a groan and the puke face again. Thank God! Dose him for 20 carbs just to be sure.

I checked him an hour later as the day filtered through his body. These are the times you expect to see either a 400 blood sugar or a 40 blood sugar. Much to my delight it was neither.

Thank God!

At this moment you are never sure how to react to the number. Don't get me wrong, I was extrememly excited that I actually pulled off a Chuck E. Cheese birthday party! To everyone else, Rocco is a perfectly, average kid (albeit with a crazy mom that won't leave her kid alone.) Ha! That's ok, I'll take the hit! However, I feel bad that I completely fed my kid sugar and processed, crap food all day. But that's the thing about type 1 diabetes that is confusing to an outsider and even more complicated to explain. Sometimes, with this disease, sugar and processed food help keep your child alive. I know it's odd but strangely, it's just true. Life's too short to blame yourself for stupid things, right? Just keep going....

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