To the Ends of the Earth…

Isa and Aunt Shelly

Isabella and her Aunt Shelly during the 2014 JDRF Walk to Cure Diabetes

**Thank you to Isabella’s Aunt Shelly for being our special guest blogger this week! We hope you enjoy her post below.

Over the weekend we kept the trio on Saturday night so Greg and Kristina could enjoy a night out to themselves. I swear that the cousins can never get enough of each other and would really prefer to just move in together.

Within about 2 hours of us getting back to our house and having dinner Isa’s blood sugar was high….220 to be exact. She ate dinner and it was just hitting her. I texted Greg to ask him a question about her insulin on board (IOB) and to verify that I should not adjust her insulin at this time and to give her insulin time to work. He verified that was the right thing to do. See?  I’m getting pretty good at handling this stuff by now.

The rest of the night was uneventful. The kids ran around for a little bit until we settled them down for a movie and put them to bed. They were all pretty tired and went right to sleep. We’re pretty good at that as well….7 kids in the house and all go right to sleep…no problem.

Within 30 minutes of bedtime Isa’s continuous glucose monitor (CGM) started beeping telling me she was low. I checked her and she was definitely low….56 to be exact. That’s pretty low if you’re wondering. I gave her some juice and her number came up to 80 within about an hour.

Unfortunately she hovered around that 80 all night which meant a constant beeping CGM and more juice throughout the night. Trying to get a 4-year-old to drink juice in the middle of the night when she really doesn’t want it isn’t an easy task for sure. By 4am I put my husband on that duty and he finally got her to drink the rest of what was left of what we were trying to give her.

What I remember distinctly from that night is that I sat in my bed and do what I do best: I prayed. I prayed for Greg and Kristina first. I prayed for their guidance and for their support through this as I know this cannot be easy day in and day out on a parent. Mostly, I know it cannot be easy watching their little girl knowing she’s not going to wake up better the next day. Then I prayed for Isa…like I do so often. I prayed for her strength. I prayed for there to be a cure one day. I prayed for the doctors taking care of her. I prayed that as she gets older she is able to take care of this on her own and doesn’t rebel. I prayed that she be ok in the morning…..this was my biggest prayer in that moment, and I’m sure one that Greg and Kristina worry every night when they go to bed.

The next day Greg told me how to temporarily turn off Isa’s basal insulin on her pump so she stops getting it…which is probably what needed to occur the night we had her so her numbers could come back up. That’s the thing with this disease: there is no simple answer. A lot of it is trial and error and seeing what works best for you or what works best in the moment. Type 1 Diabetes is manageable, but the scary part is that you just never know. One wrong move and the person dealing with this disease could be in a coma or not wake up.

I am always in awe of Greg and Kristina’s willingness to let us keep their little girl without a second thought. I never, not one time, have felt like they worry about Isa when she’s with us. I second guess myself sometimes about what I could have done differently and I would go to the ends of the Earth for my niece. I love her like I love my own children. Kristina and Greg are educating so many through their guidance, their love and their patience with this disease. They are giving Isa the tools to one day, when she’s older, be able to go out on her own and conquer the world. Hopefully when that happens they will not worry about her quite as much because she’s been trained so well. I am in awe, as always.

~Shelly

Shaping Friendships

Just before Thanksgiving the stars aligned and just like eHarmony for the T1D world (dHarmony?) we met a sassy blogger online named Libby. A twenty-something who also happens to be pancreatically-challenged, Libby asked us if she could interview us for her blog and we were pumped (pun totally intended).

I told Isabella that a new friend with T1D wanted to interview her…which set off a string of questions about who this mystery girl was, what kind of ice cream she likes and whether or not she’d seen Frozen. She was excited and I was, too.

After our interview with Libby (which was chocked full of so much awesome that I’ll let you read it yourself) we decided we wanted to send her a thank you card and one of our fab Inspired by Isabella t-shirts. Of course, being 4 years old and looking for any excuse to get marker on my nice, Amish-made table channel her inner Warhol, Isabella said SHE wanted to make the card. The “card” turned into half a dozen drawings and notes, dictated letter by letter by me, to our new friend Libby.

“Does ‘Libby’ begin with an ‘L’, mom?”

“Are there one or two ‘o’s in ‘love’?”

“How do you spell ‘best friend’?”

And that right there made my eyes start to leak.

Isabella brought me her stack of notes and drawings and as I thumbed through them I stopped at one. It was a drawing she had made of her and her new BFF, surrounded by flowers and a rainbow, their names scribbled to indicate who was who.

libby

It was hard not to notice the numerous shapes Isabella had drawn up and down the two figures, seemingly random.

“I love this drawing, Isa. Can you tell me what these shapes are on you two?”

“Those are our sites…for our pumps and cgms.”

And I could feel my heart sink.

But then I noticed something else. Smiles. Both the stick figure image of Isabella on the paper and the pigtailed toddler standing in front of me had smiles spread across their faces.

And I knew. I knew that Isabella had found someone else she could draw who also had shapes running up and down them like a highway of reminders of this disease. She was smiling because she had found someone to look up to and to show her that she shouldn’t be ashamed of these shapes. And while her shapes will never define her, they are a part of her story.

Thank you, Libby, for helping Isabella embrace her shapes…and for sharing her journey.

Cheers to Changing the World~
Kristina

Guilt

laughterTears. Lots of tears.

Arms flailing, screams echoing through the house. A chorus of doors slamming and feet stomping rattle the walls.

Dr. Jekyll, meet Mr. Hyde.

So often people tell us that Isabella seems so happy, always full of smiles. We share photos of her with her silly grin, stretching from ear to ear, proud of this and happy about that. To the outsider she seems like a toddler full of so much joy, conquering each daily challenge with a hop in her step and a shine in her eyes.

But not today.

Today she is losing…and so are we.

One of the many challenges of type 1 diabetes is that its affects can vary person by person. Some can feel their lows coming, getting tired and shaky. Others, like Isabella, show no sign that their blood sugar is falling to a dangerous level. In fact, Isabella is almost always giddy and laughing when she is low.

As difficult as it is to tell her lows, her highs are hard to miss. The happy, goofy 4-year-old disappears and an anger-filled stranger takes her place and, as has become routine, she is exiled to her room until she calms down…usually falling asleep, exhausted from screaming and crying.

And I feel guilty.

I feel guilty because I know her body is playing a mean game of “Perfection”…just waiting for the sand timer to run out while trying everything to get her blood sugar back in range before scattering all of the pieces to the ground. No matter how hard we try, it always seems like the sand is faster than the insulin running through her body and we lose…a lot.

But there she is, sent to her room to cry it out and sleep it off. Kept home from a classmate’s birthday party because of her diabetes-assisted tantrum. Punishment for a disease she didn’t choose and for effects she can’t control.

And I feel guilty.

We get home from the party and prepare for bath time. I’m still angry at Isabella for her earlier fit, and even more frustrated that she doesn’t understand why she couldn’t go with her brother and sister. As she steps into the tub a mix of emotions hit me as I catch a glimpse of the technology keeping her alive. An insulin pod attached to her arm and her continuous glucose monitor embedded in her lower back…my robotic daughter.

And I feel guilty. And I am mad. Mad at this disease and mad at what it does to my beautiful little girl. Mad that I can only control so much and mad that I feel guilty for trying to parent the best way that I can.

And tomorrow we’ll flip the sand timer again…

Cheers to Changing the World~
Kristina

Grandma Gets It: Diabetes and Disney

*Our family had the opportunity to attend this year’s Children With Diabetes ‘Friends for Life’ Conference held each summer in Orlando.  This was our second year attending the conference and we decided to invite one of Isabella’s grandmothers, Darlene, to join us. While we will be sharing our own thoughts on the conference (look for 2 additional posts from us with our mom & dad reflections), we also asked “Grandma Dar Dar” to write a guest blog about her experience.  We hope it will encourage other grandparents, aunts, uncles, and extended family to consider learning more about caring for a child with type 1 diabetes…the more people a family has on their diabetes care team, the better!

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A great night at the Friends for Life banquet!

I spent an incredible week with my son Greg, daughter-in-law Kristina and triplet grandchildren, Isabella, Mia and Max in Orlando for the Children with Diabetes Friends for Life conference. When they invited me to go with them, I had no idea what all was involved.

The conference didn’t start until Wednesday so we spent the first 2 1/2 days at the Disney parks and it was such fun. I think we stood in line to see every Disney princess possible…as well as Mickey and Minnie. The kids were so excited.

We went on rides, too, and while waiting in line for one ride, Isabella pointed to a little girl in front of us and said that she had a green bracelet on. Her dad asked her what it meant and she said that the girl had diabetes. We hadn’t signed in for the conference yet but, when you sign in, you get a green paper bracelet if you have T1D and an orange bracelet for those who do not have T1D. Isa remembered this from the previous year and it amazed me that she remembered this. Then Isa showed the little girl her OmniPod insulin pod.

When you go somewhere with children you have to take extra clothes, snacks, diapers or Pull-Ups, if needed. When your child has T1D you also need to bring glucose tablets, juice boxes, insulin, a glucometer and glucagon (an injection in case the blood sugar drops too low). Greg and Kristina checked Isabella’s glucose level frequently throughout the day. While we were waiting for the shuttle to take us back to the hotel, the kids were running around and all of a sudden, Isa was just standing there and said she was tired. Greg immediately checked her glucose level and it was in the low 50s so they gave her a juice box to bring it back up. This made me realize that she needs to be checked frequently…and it is a big responsibility.

At the conference I attended a number of sessions for grandparents and learned a lot. Even though I am a retired nurse, I didn’t know a lot about T1D and how to handle the highs and lows since so much has changed with the use of pumps and continuous glucose monitors(CGM). You really need to be on top of things and recognize the symptoms of low blood sugar.

I have also been very concerned about the complications of diabetes and worried for my beautiful granddaughter but ,after attending one session, I was relieved to learn that long-term complications usually only occur if the blood sugar has been high(250-300 or more) for an extended period of time. In fact, one presenter has had diabetes for 55 years and is doing fine.

An interesting statistic is that 15,000 children per year are diagnosed with T1D. A doctor at the Diabetes Research Institute (DRI) in Miami, Dr. Chris Fraker, has found a correlation between certain viruses and T1D and hopes that one day if they can find a way to stop the viruses from destroying the islet cells in the pancreas which produce insulin, then diabetes will be cured.

Many who attended the conference have been coming for years and have developed friendships. It was so great to see the older kids interact with Isa and when Isa saw someone with a green bracelet, she wanted to meet them and show them her insulin pump or the Dexcom CGM she just stared using. 

We heard from athletes with T 1D who have done amazing things like competed in NASCAR and Indy car races (Ryan Reed and Charlie Kimball), doing triathlons (Jay Hewitt), and one young man who is running four marathons per week for nine months across Canada (Sebastian Sasseville) and they are an inspiration to the young people with T1D and show them that they can do anything they set their sights on.

It was a wonderful week and one that I will always remember. 

-Darlene

What I Signed Up For

Trio

“I’m so sorry…I know you were just here.”

“It’s fine. It’s what I signed up for.”

I jump in my car, still warm from my return trip picking up a sick son just 30 minutes earlier, and head to the preschool to tend to an insulin pump that is screaming its head off…the 6th insulin pod in a box of 10 to bite the dust before the 3-day window closed.

But, this is what I signed up for.

Last month I made a quick stop at Macy’s and, as has become customary since our trio arrived, I spent the entire time flipping through the clearance rack in the kid’s department.

I stepped up to the checkout counter, my arms filled with Dora jammies and Hello Kitty flair, proud of my deal-seeking skills.

 

“Wow! Do the girls you are buying for know that they’re getting some cute new things?”

“Actually, these are for my daughters.”

“Oh, you have twin girls?”

“Well, I have triplets…two girls and a boy.”

“Holy cow! What did you do when you found out you were having TRIPLETS?!? I would have hung myself.”

And…scene.

The sad truth is that this isn’t the first time someone has said something like this to me. In fact most people I meet who learn that we not only have triplets, but that one of them also has type 1 diabetes, express their sympathy to me in varying forms.

But, this is what I signed up for.

When I was young I used to say that I didn’t know if I wanted to have children…I knew I had a selfish side. I wanted to be successful professionally. I wanted to travel. I wanted to have the freedom to do what I wanted, when I wanted.

And then things changed. I wanted to be a mom.

But it wasn’t that easy. Not easy at all. Like, 5 years not easy.

It’s not until you realize that there’s a possibility… a real possibility…that you can’t have kids that you realize whether or not you are meant to be a parent. I realized I had been wrong.

I wanted someone to call me “Mommy”. I wanted someone to ask me to tuck them in at night and assure them that there were no monsters in the closet. I wanted someone to ask me why the moon goes to sleep during the day and why Donald Duck doesn’t wear pants.

That is what I signed up for.

When people ask me “How do you do it?” the answer is actually pretty simple…how could I not? I don’t know any different.

When you become a parent you are making a commitment to one thing: to love your children…no matter what. We don’t get to choose what challenges come with parenthood. We don’t get to decide what we can handle and what we can’t…that’s done for us. What we do get to play a role in is HOW we parent and HOW we show our children that we love them.  Did I sign up for diabetes? Of course not.  But I did sign up for being a mom…diabetes or not.

I am constantly amazed by the number of friends we have whose children are facing challenges including type 1 diabetes, Spinal Muscular Atrophy, Apraxia, severe food allergies, and many more. Did any of us know or envision our children’s lives being consumed by these challenges? No way. Did any of us know we would soon become advocates, fundraisers, and educators about these diseases/disorders? Not a clue.

But, we have…because that’s what we signed up for.

Cheers to Changing the World~

Kristina

 

Why We All Need A Patty

Isa and Addison

Most people would look at this photo and see two little girls, happy and smiling…without a care in the world. What you’re really looking at are two AMAZING 3-year-olds fighting the challenges thrown at them by type 1 diabetes.

We had an awesome day with little Addison and her family today where we enjoyed pizza,  pump site changes (one planned and one not!), high (400) & low (48) blood sugars, and the beginning of an adorable friendship between two toddlers who’ve found a friend that “has didabeeeteees too!”

Watching Addison ask Isa if she wanted stickers to decorate her new insulin pod and holding her hand during her site change…and seeing Addison timidly show Isa her continuous glucose monitor adorning her little belly…it made me realize just how much it matters to have someone by your side who’s fighting the same battle as you. And I’m not just talking about the girls.

When Isabella was diagnosed we were in the hospital for less than 24 hours when we had a knock on our hospital room door.  In walked a woman that, though I didn’t realize it at the time, would set the scene for how I would be as a mother of a child with T1D.

Over the next hour this woman, Patty, told us about her life as a mom and wife to children AND a husband with Type 1.  She gave us a book of information about diabetes care she had photocopied from when one of her children was first diagnosed. She told us about diabetes camps and the difference they had made in her children’s lives.  She smiled. She laughed.  And her hair and makeup looked great.

She was normal.  

I wanted to be like Patty.

Before Christmas this past year a classmate of Isa’s was diagnosed with Type 1.  Up until that moment Isa had been the only child in her school with diabetes.  I didn’t know the family of this newly diagnosed child and had heard they would be moving and leaving the school over the holidays.  The day before the holiday break I went to the school to pick up the kids and, almost as if it was meant to be, the little boy’s father was there picking him up.  I am a firm believer in fate, and this was it.  It was my turn to be Patty.

I passed our contact info on to the dad and encouraged him to reach out to Greg or I if he or his wife needed anything. I told him about our experience with the OmniPod pump and about the Children with Diabetes Friends for Life Conference we attended in Orlando. I told him we were just a year post diagnosis so we were still learning, too, but that we could certainly provide advice based on our short experience. I was sure I’d return home that day to an email from this family with a list of questions I could answer. 

I was wrong. I was obviously no Patty.

Today while chatting with Addison’s mommy and daddy I was reminded of how important it is for parents of T1D kids to connect. To share stories of what’s worked and what hasn’t.  To commiserate about those unexplained lows and to curse the technology that, in reality, is helping us keep our children alive. To beam with pride when our kids exhibit bravery we could never muster.

We all need a Patty to remind us that our lives as our kid’s substitute pancreas won’t be easy, but to keep in mind that our kids will take their cues from us. It’s up to us to assure them that their diabetes, though a part of who they are, doesn’t define them. It’s up to us to let them know that there is an Addison somewhere out there to hold their hand.

So, for those of you who are newly diagnosed, or those who have just gotten the courage to seek out some support, we are here. I may not be a Patty but I can assure you that my hair and makeup look great, too.

Cheers to Changing the World,
Kristina

 

When Routine Is Not So Routine

surgery2On Monday Isabella had two fairly routine surgeries…one to remove a small, pea-sized bump on the left side of her neck (she was born with it) and another to insert tubes in her ears (we wouldn’t have known about the fluid in her ears if she hadn’t see the ENT doctor about the bump on her neck!). As parents of a child with type one diabetes, you quickly learn that “routine” procedures are never quite routine anymore. You have to be prepared for everything.

Isabella had known about her surgery since the day she met with the doctor. She knew that the doctor would make a cut in her neck to take out the bump and also knew that he would put some tubes in her ears.  She understood all of this as we talked with her about it several times…yet I never really saw her show any signs of fear or anxiety. In fact, in the weeks leading up to her surgery, she loved telling her brother and sister that the doctor was going to remove her bump and put tubes in her ears. She told them as if to rub it in that SHE was going to the doctor and THEY weren’t (our kids love doctor visits!).

The night before the surgery I went to check Isa’s level before bed and heard her say in her sleep, “blah, blah, blah…tomorrow…blah, blah, blah.” At that moment, I knew that she was nervous about the surgery. I sat there thinking what a strong, brave and courageous little girl she is, a fact I’m reminded of on a daily basis. I corrected her low blood sugar, something that would be more difficult in another hour since she had to fast after midnight and up until the surgery (not an ideal situation for someone with T1D!). A few hours later she climbed into our bed with a fever, a cough and tears. She tossed and turned for the next several hours until we woke her to leave for the hospital.

We arrived at the hospital early in the morning, about two hours prior to her surgery.  After registering Isabella they called us to one of the hospital rooms where we met with a nurse.  She started asking us questions about Isabella’s diabetes. Isabella was being very quiet and shy.  Then we were visited by a child life specialist, who really made Isabella feel comfortable and she started to come out of her shell.

Unfortunately, Isabella’s cough had gotten a bit worse and her fever was starting to come back. The anesthesiologist expressed some concern and we thought that they might cancel the surgery. While we were hoping the doctors would make the best decision to ensure our daughter’s safety, we really didn’t want to reschedule the surgery for another day. Thankfully, they decided to move forward with the surgery.

The doctors and nurses “huddled” in our room…and discussed the surgery to align their team and also ensure that we knew what was going on. It was a bit unnerving because we really didn’t know up until that moment if she would be able to wear her insulin pump during surgery and recovery (which would have been approximately 3 hours without basal insulin from her pump); we were prepared for any scenario, including an overnight stay. Luckily, the doctors agreed she could wear her pump during surgery.

At this point, I checked Isabella’s glucose…she was at about 90, which is generally a decent level; but, she still had insulin on board, which meant she would be dropping lower. This was concerning, especially given the uncertain effects of the anesthesia and her cold. After a bit of discussion, the doctors agreed to let us give her about 2.5 grams of glucose gel, which we were hoping would be enough to combat the insulin, while they prepped her for surgery and hooked her up to an IV (which they could use to give her glucose, if needed).

As we weren’t permitted in the operating room this meant the anesthesiologist would be in charge of monitoring Isabella’s glucose levels and applying insulin, if needed. We knew she would be checked at least once per hour and they would handle corrections as needed, but we had no idea how her body would react to the anesthesia, so we were quite nervous. It didn’t help at all when the anesthesiologist turned to me and asked, “Can you show me how to use her pump?”

I nearly grabbed Isabella and ran for the exit! I took a deep breath and literally gave a 5 minute crash course on how to use her OmniPod. I really wasn’t feeling too good at that moment. I calmly began to explain all of the backup supplies in her kit, including the insulin pen in case the pod stopped working or in the event they had to remove the pod unexpectedly.  I felt like I was being rushed along since they were getting very close to the surgery start time. I kept thinking I was forgetting some important detail.

Surprisingly, I was not at all concerned about the actual surgical procedures they were about to perform, but I was terrified about the uncertainty surrounding Isabella’s T1D. As much as I tried not to think about it, I couldn’t help but recall the recent national news story about a young girl who went for a “routine” procedure, which ended tragically for her and her family. That was without T1D involved.

The anesthesiologist told us it was time for Isabella to go back to the operating room and be prepped for surgery. Isabella, of course, chose to have her mommy join her while they applied the anesthesia. I gave Isabella a kiss goodbye and told her I loved her and that I would see her soon. Isabella, Kristina and the doctor left the room and there I was standing all alone, with tears welling up in my eyes. I sat down and prayed that my little girl would be protected and that her doctors would make the right decisions to ensure a successful surgery and quick recovery.

A few minutes later, Kristina returned and we left for the waiting room. While we waited, we received periodic updates on the pager provided by the hospital. This was a nice feature as it kept us up to speed on the surgery.  That being said, I nearly jumped out of my chair the first time the pager vibrated. Luckily, it only read, “Surgery began at 9:59am.” About 30 minutes later, another alert read “Patient still in surgery. Everything’s going well.” Everything’s going well! What great news!

It wasn’t until after the surgery when we met Isabella in recovery that the doctor told us that her blood sugar dropped to 60 during surgery, at which point they started glucose through her IV drip and she began to slowly climb back up. It was probably a good thing that we didn’t know that as we would have both been a nervous wreck.

Isabella was sleeping soundly and looked so cute laying there. I sat there watching her sleep with an IV, heart rate monitor and various machines beeping in the background.  My mind immediately took me back to August 28, 2012 when Kristina and I sat in a similar hospital room in Mexico City shortly after Isa was diagnosed with T1D. Seems so long ago.

Then Isa started to move around a little bit as she was waking up. I jumped up from my seat and gave her a kiss on the forehead and told her she did so well and that I was so proud of her. The nurse said we could pick her up and hold her. Isabella, of course, wanted mommy to hold her (I’m sensing a pattern here!). She was very happy when they brought her a “purple-flavored” popsicle, her first meal since the night before.

All of the nurses and doctors kept commenting on how mature Isabella is and how much older she seems. Unfortunately, her life is not that of an average child due to her T1D. She has been forced at such a young age to exhibit strength, bravery and courage that most adults, including myself, have not had to deal with in their lifetimes.

I am truly Inspired by Isabella. Are you?
~Greg

Reflections From A Substitute, Substitute Pancreas (AKA: Aunt Shelly)

As we sat in the airport club waiting to board our flight to Las Vegas…our first trip away from our children and since Isabella’s diagnosis…I sent a quick text to Isa’s Aunt Shelly: “Would you be interested in writing a guest blog about your experience managing Isa’s diabetes this weekend?” Her response: “That would be awesome.”  So, here you have it:)
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Isabella and her Aunt Shelly

Isabella and her Aunt Shelly

Last summer my brother asked me if I would watch the trio so he and Kristina could have a long weekend away.  “Absolutely,” was my response.  In December, Greg decided to surprise Kristina for Christmas and take her on a 4 day trip to Las Vegas right after New Year’s and asked if I was sure we were ok with watching the kids.  Again – “absolutely,” I said. I realized that I would be charged with not only adding three 3 year olds to our family of 4 kids, but I would be managing Isa’s T1D. The fact that I was entrusted to take care of Isa was an honor that I didn’t take lightly. I knew I was up for the challenge and off they went…..

Greg and Kristina dropped the kids off on a Wednesday night and thus started Isa’s monitoring.  I was given some base numbers to decide if I should check her in the middle of the night or not, but had already decided that I would feel better just getting up and checking her to be sure all was ok. This meant that I would be checking her around 11:00pm before I went to bed, and then setting my alarm to check her at 3:00am.

Over the next few days I realized that having T1D is very much like having a newborn again. Her glucose must be checked every 2-3 hours and she eats something after each check while inputting her carb counts into her OmniPod insulin pump.  I’ve never had to worry about what food or snacks to give my own children. I just feed them whatever we are having and if they want a few cookies after dinner then so be it.  With Isa, that is so different. I wanted to ensure that each meal and snack had what she needed to keep her levels in check. Overall, I think it went pretty well. She had a day of some higher numbers that really couldn’t be explained unless it was from the one small cookie that she had the day before. She also had some lower numbers in the middle of the night that I offset with some glucose gel to ensure she didn’t drop too low before she awoke. I now know that sometimes, no matter how accurate your carb inputs are or how much you do right, you just can’t explain some of the high and low numbers.

Throughout the 4 days everyone in the house was checking Isa’s glucose for her and at one point she said “Aunt Shelly, none of my cousins are checking me today.” She loves her cousins and definitely feeds off of the attention they give her.

On Saturday morning I was cleaning up from breakfast and all the kids were in the basement playing. I went down to see what they were doing and they were all lined up in front of Isa. I was told that she was “checking” everyone’s levels. It was so cute that they were all pretending to have their fingers pricked, but also sad when I thought about the reality of this for Isa.

Isa had to have an insulin pod change while she was with us as they expire after 3 days. We started the process and she was very positive. She told me it would hurt when the needle went in. I asked her to squeeze my hand to help her. She didn’t even flinch and had not one tear.  That was a proud moment for me.

The day came for Mom and Dad to pick up the kids and I must say I was a bit sad.  As busy as we were taking care of all of them and especially taking care of Isa, I felt a bit empty at their leaving.  I feel honored that I would be trusted to take care of Isa’s life because that’s basically what I was in charge of. Isa’s levels must be monitored constantly and the insulin she receives keeps her alive. I have a whole new respect for this little girl. While she has T1D, the reality is that she’s just a little girl that doesn’t really have a clue of the enormity of the card she has been given in life. I am confident that her independent attitude will take her wherever she wants to be. She lights up the room with her laughter and smile. I will be right there with her along this journey and am thrilled that I get to be her aunt.

What Faith Feels Like

faithFebruary 2010.

This was the last time we traveled anywhere together. No kids. No diabetes.

Fast forward to last week as we dropped the kids off at their aunt & uncle’s house and waved goodbye for 4 days.

Rewind just a bit to the two hours leading up to the drop off as we prepared bags for 3 toddlers…

“Do you have extra test strips in there?”

“The insulin in the kit won’t be enough for two pod changes…actually we should probably have enough for 3 just in case we have any pod failures. Oh, that means we should put a few extra pods in the bag.”

“Are there any alcohol wipes left in the pump kit?”

“I need to make the food list with carb counts…I’ll just send the pre-measured snack bin…that’ll be easier.”

Notice a trend? Not a single discussion about normal toddler essentials…pure “diabetes preparation panic” talk. No discussion about blankies or dolls, tooth brushes or diapers. Just straight “are we really sure we can put all of this responsibility on someone else?” talk.

But we did.

And you know what?

Aunt Shelly & Uncle Roy (and some Grandma Dar Dar thrown in!) rocked it.

We learned a big lesson this weekend about trust and faith. I’ve told people many times that when the nurse came in to our hospital room after Isabella’s diagnosis and said we could go home, I couldn’t believe it.  They were letting us LEAVE?!? I was terrified.  How would we possibly know what to do? How could they possibly believe we could manage this disease that we’d just met 4 days earlier? Did they not realize they were putting us in charge of our daughter’s LIFE?!?

A year and a half later I now know how they were able to let us leave that day: they had FAITH.

The first time your parents let you board that yellow bus…they had faith that the driver would get you to school safely.

As they handed over their car keys as you head out for your first solo drive…they had faith you wouldn’t believe the old “stop signs with a white outline mean ‘PAUSE’ myth”.

When your college roommate asked you to go to that party with her…she had faith you wouldn’t let her make bad decisions.

Stepping into your classroom as new teacher…your principal had faith you’d make a difference in your student’s lives.

Delivering your first child…you had faith in the doctor’s “Water Balloon Toss Champion – 1981” trophy displayed in his office.

I believe that parents are always nervous the first time they leave their child or children in someone else’s care.  The reality is that if we spend our lives worried about the “what ifs” with any of our children, we may never know what the “could’ve beens” might be. There exists so much uncertainty raising children, T1D or not, that it could very easily consume your every moment in life. We’ve chosen not to let it. We’ve chosen to trust and have faith that if we can learn how to manage Isabella’s diabetes, others can, too.

In fact, doesn’t it make sense to teach everyone in the canoe how to row? Let me know if you need a paddle. 🙂

Cheers to Changing the World~
Kristina

Monkeys Always Make Things Easier to Explain

Coco ReadingImagine trying to explain Type 1 Diabetes to a 3-year-old. Now imagine trying to explain it to a whole class of 3-year-olds.  Sounds like a challenge, right?  Well, challenge accepted!

For weeks I’ve fielded questions from Isabella’s curious classmates as I checked her blood sugar and gave her insulin shots.  With Isabella starting on her OmniPod pump, I was thrilled that her teacher let me come in and read two books to her class about a new Disney character with T1D: Coco the Monkey. Not only does Coco have diabetes, she also wears a pump…just like our Isa!

The books follow Coco as she begins school and as she prepares to attend Goofy’s birthday bash.  I learned during our book reading  that 3-year-olds have very selective hearing (you’d think I’d be VERY familiar with this already) as the kids yelled out things like “My birthday’s next week, too!” and “I met Pluto this summer!”  Regardless, the kids did great and I loved seeing how proud Isa was to show off her pump to her friends.

If you are looking for a way to “explain” your child’s type 1 diabetes or their insulin pump to young classmates or friends, I highly recommend you check out these books.  Though not available for purchase, you can ask your child’s doctor for copies.  More info about the Disney partnership with Lilly can be found here: http://spoonful.com/type1.

Cheers to Changing the World,
Kristina