Truth Is..

On my teenage  son’s facebook page, I get a kick out of the “Truth IS” confessions of the kids.  Here are a few of my own Truths.  

Employer: Sorry if I come in looking as though I haven’t slept in days.  Truth is I haven’t had sleep in over 4 years, since my son was diagnosed with Type 1 Diabetes.

Friend: Sorry that I declined lunch today, it’s not that I don’t want to spend time with you.  And sorry that I missed your invite to coffee this morning.  Truth is I would love to have lunch, but had to go to school for years and dose my son with insulin so he could eat his lunch. Coffee would be awesome, unfortunately we were up at 12:00, 2:00 and 4:00 am checking blood sugars, so I slept in this morning. Anyway we could have coffee at 12:00 midnight, as I will need the caffeine to catch the next blood sugar.

Teacher’s: Sorry if my son comes to school yawning and sometimes putting his head down on his desk.  Truth is that my son wakes up for every blood sugar check. He fights me if I try to check him as he sleeps. He has some sort of radar that wakes him immediately upon my sitting on his bed.  If I go to gently take his hand, he pulls it away and stuffs it up under his body.  One night, in desperation, I pricked his arm.  He wouldn’t wake up, and I had to know if he was in a coma.  Another time  at 2:00 am, after struggling to wake him, he finally sat up and proclaimed: “this is all about you isn’t it!” I laughed and replied: “Yes Dear, this is exactly what I want to be doing at 2:00 am!” So please cut my son some slack if he seems tired or gently lays his little head on his desk. He’s exhausted.

Endocrinologist: Sorry if we don’t always come in as prepared as you’d like for us to be.  Truth is preparing for your visit is terrifying to most of us parents.  All the paperwork and logs needed are exhausting, and very stressful to have a two weeks worth at appointment time. I completely understand the need for them. How else can you help us change basal rates and insulin to carb ratio’s. So when I come in with the print out from my son’s insulin pump, please don’t look at me like it’s from outer space! It’s better than a hand written log! It’s exact numbers! Technology Baby! At its best! Please learn how to read them.

House: I know you aren’t as clean as you could be, and because of this we don’t entertain as much as we used to.   The truth about my house is that it’s clean, but not sparkling.  I learned a long time ago that it’s better to make your house a home by living in it. And not being embarrassed if something is out of place when a friend drops by expectantly.  By the way, with the addition of the two dogs, I don’t see you ever sparkling again.

Husband: Sorry if I am not as “attentive” as I used to be.  You need to know one thing, that is that I love you unconditionally, today, tomorrow and always.  But when I say I have a headache, I really have a headache, from lack of sleep.

Truth is, I gotta run, nap time.

Changing Times – My Little Boy is Growing Up

Joey 12, Tony 16
My boys are growing up.

Joey is growing up, which is the natural progression of life. So why do I feel like I need to grow along with him?

This past week has been a growing experience for all of us. Saturday he asked if he and a friend could get a ride to his school’s big track meet. It was held at CMH, and I knew that there would be a lot of parents there who are aware that Joey has type 1 diabetes.  The problem is that I didn’t talk to anyone to make sure someone was watching over him.  Which is exactly what he wanted, to be on his own at an event.  I’ve always made it clear to my kids that when you attend a small school, (smaller than our big public schools) and you are out at an event with friends,  on your own, there are always eyes on them.  And that I would most likely hear about the negative stuff they did, rather than the positive, therefore, always act like you do when you are with me and your dad.

Most parents don’t have to think twice about dropping their kids off at a school event, in fact by 6th grade it’s quite common.  For us, it’s not so easy,  I have major anxiety every time I leave him somewhere if we aren’t along.   Kids with type 1 diabetes get dehydrated super fast, a lot faster than kids that don’t have it. Their blood sugar also goes high and low at times, both having their own side effects. For instance if Joey goes low, and doesn’t treat in time with a fast-acting glucose, he could pass out and go into a diabetic coma. If his blood sugar is to high, and goes untreated by way of a correction, he could have a seizure.

After talking it over with Joe, we decided to let him go to the track meet.  The deal was that he had to test his blood sugar every 2 hours and text me the number! He passed with flying colors, this time.

Along with Joey growing up comes a responsibility on his part, to take care of himself, and put his health before his “reputation.”  Joey is a pretty well-liked kid, very popular, and girls are starting to come into the picture.  My fear is that he won’t test his blood sugar if there are girls around, or if there are new kids around.  Take for instance the other night at basketball practice.  It was his first practice, only knows a couple of the boys.  Joe and I went along to check it out, and talk to the coach for Joey’s team.  Joey put his sports bag with all his supplies on the bleachers.  It was a very fast paced 2 hour practice with one water break.  I expected him to come over and check his blood sugar, but he didn’t.  When I gave him that look, he shook his head no, and looked away.  This is what worries me.   When practice ended, he said he felt good during practice, so he didn’t feel the need to check.  I have to trust that he knows his body, and will make decisions based on that.

The long term effects of type 1 diabetes is high blood pressure, coronary heart disease, neuropathy, hardening of the arteries, which can lead to coronary artery disease, stroke and heart attack.  It’s so important that we teach Joey that what he does now, sets the stage for his future health.

A couple days later a friend called Joey and asked him to join some buddies to go jump at the new trampoline place in town. I asked him if the Mom was going to stay while they played. The answer was “I don’t know.” I explained that if the Mom was not going to stay then I would have to go along. The reason: some kids with type 1 exerts so much energy jumping, that their blood sugar drops fast and furious! Sometimes so low that they get off and are a bit confused!!  How could I let him go without adult supervision? I couldn’t for his health.  I was so happy when the place was full for the night, so they decided to go play Laser tag instead.  Again, my question was “will the mom stay?”   Turns out that the boys baby sitter was driving them there. My heart sunk! Not only am I I worried about him going without us, but now he is going in a car with a teenager driving? I didn’t know her at all. When she pulled up Joe and I were both outside. Joe asked her if she was planning on staying…nope. She had to drop off, then run to school and give a quick presentation! She would only be about an hour, and then would be there to pick them up!  Now what do we do?  I offered to drive the kids myself, but since she was the babysitter, she had to earn her fee.  I considered driving him separately  but soon saw disappointment on his face.   I had to let him go.

The minute they pulled away, Joe and I looked at each other with panic on our faces.  It’s part of growing up, going with friends to parties, sporting events, Laser Tag.  But for us, it’s been under our watchful eye.  Take a deep breath and breathe.

As a parent it’s my job to teach him to be independent, if he doesn’t learn how to take care of himself, I failed. So why am I feeling so anxious now that he wants to take the steps to independence?  Since 2009 I have been like Joey’s pancreas, always there with him, to make sure he checks his blood sugar, to help count carbs, to have him check his blood sugar during sports.  I went to school everyday for 2 years to dose his lunch.  All along, teaching and guiding him – to become self-sufficient. I just wasn’t prepared for him to grow up so fast.  I was preparing him to spread his wings, and learn to fly, and prayerfully, stay on course.  Joey is growing up, he is doing what every other kid his age does, he wants some space, to learn to do things without us.  He knows it hard for us.  And he respects that, but is also asking for us to let him grow up.

As the car drove off, with Joey inside, Joe looked at me and asked: “Are you ready?” I asked “for what?”  He said, “to go sit in the parking lot of  the Laser Tag place!”  Yep, just let grab my purse!

Joey takes on the Capitol

Seen first at http://suited.myomnipod.com/therese/joeys-diabetes-day-at-the-capitol/

Joey in the office of a Senator, hmm..

My son is taking on and conquering way more than I ever could have at age 11! I am so proud and excited for him. It sounds like a cliché, but I really am amazed at what he is doing. He was very nervous about taking on the Wisconsin Ambassador position for the American Diabetes Association – and rightfully so. He would have to speak in front of people that he has never met, tell his story about having type 1 diabetes, and try to inspire kids and adults alike. I believe that he is doing that and more.

As part of the Ambassador program, Joey was invited to take part in the Diabetes Day at the Capitol. It’s a day where volunteers from around the state of Wisconsin come to Madison and go before lawmakers to gain support for diabetes issues. You really gain insight as to how the system works.

Diabetes Day

We went in groups over to the Capitol. Our group consisted of Joey and me, a man who works for a pharmaceutical company that sells insulin, and Dr. Patel, MD, DPhil, FRCP, BM, Bch, from Froedert Hospital. Dr. Patel is also the current President of the American Diabetes Association. I don’t know what all the degrees stand for after Dr. Patel’s name, but I can tell you that I am glad I didn’t know who he was when we started out. I would have been so intimidated and nervous that I probably wouldn’t have uttered a word. HA-HA.

We were assigned appointments with specific senators and/or state representatives, and then given a couple names to drop in on. We sat down and each of us in the group offered insight into how diabetes affects the family (both from a personal and financial standpoint), how it affects our state’s budget and how certain laws are hindering people that use insulin. For instance, did you know there’s a law in place that dictates that if someone who has their Commercial Driver’s License (CDL) and is prescribed insulin is pulled over for a moving violation, they will immediately lose their CDL license? Even if it’s for something as simple as not wearing a seat belt! That in turn can cause a loss of income, loss of insurance and an inability to pay for healthcare; hence, the state becomes responsible for that person’s health and well being. We are asking our law makers to drop that law – it’s old and from the 70’s when we didn’t have the devices that we have today, allowing us to be healthier with diabetes.

Joey was great and he wasn’t shy at all. He started to talk about his pump and how it works, and then pulled up his shirt to show off his Pod! He told his diagnosis story and explained the difference between type 1 diabetes and type 2 diabetes. He was unbelievable. I was so proud and I only cried once. That of course is what Joey told his dad when we got home: MOM CRIED! Dr. Patel thanked Joey for doing an “outstanding” job representing type 1 diabetes, which made Joey (and mom) beam with pride.

Sharing Personal Diabetes Stories

Left to right: Michelle Alswager, Joey and Me

One highlight for me was getting to meet someone whose story I have been following and who I have admired for some time now. Her name is Michelle. Michelle’s son passed away from complications of type 1 diabetes three years ago at the age of 13. Michelle is such a strong advocate for type 1 diabetes awareness and education. She was there to tell her story to the lawmakers – a side of diabetes that cuts us all to our core. Michelle’s story really hits home, and unfortunately, there are so many others like hers.

I encourage everyone to attend an event like this. It was such a great learning experience. We got to tell our lawmakers about the disease that we are passionate about and try to make a difference in the lives of those with diabetes.

Diaversary #4 May 10th, 2009 – 2013

On May 10th, 2009 our world changed forever.  We woke up that morning happy, excited to see what the day would bring. For me it was special because it was Mother’s Day, and the kids treated me like it was my birthday.  Joe had to work the day shift, but would be home in time for dinner.

God gave me four beautiful children.  He knew exactly what he was doing when he placed each one in my arms, in the order that they came. I was very young when I had John, then only 11 months later Jenny made her arrival.  Then I stopped, for over 20 years.  John and Jenny were the perfect kids for me when I was young.  I didn’t really know what I was doing, I was a teen mom.  But, by the grace of God, and my own Mom’s help, we made it through, and had fun.  I’m blessed to say they are both parents of their own, and I couldn’t be more proud of them.

When we had Tony, I admit, being a lot older this time around, I really appreciated everything more, from my pregnancy, to the miracle of his delivery.  We had four wonderful years with Tony before Joey came along.  After Joey’s birth, our family felt complete.

God gave us this little miracle, my fourth child, my 3rd son.  God had a hand in his diagnosis day as well.  In my previous post I explain why I think it was nothing short of a miracle the way the the sequence of events happened.  Anyway, now its four years later.  I’d like to share with you how we felt the day he was diagnosed, and what’s happened since.

On the day we found his blood sugar to be 466, we panicked.  We didn’t cry right away, because I think we were in shock.  Truly, shock.  How can this be that Joey has type 1,our grandson Cooper has type 1, we can’t have this happen to our family again.  I would later find out that there are a lot of multiple children in families with type 1 diabetes.   The next few days would be a blur.  After our pediatrician appointment at 9:00 am on the 11th, we were in touch with the Endo department at Children’s Hospital of WI.  On Tuesday, May 12th, we were in class from 8:00 am-1:00 pm, and we’d given our son his first shot of insulin.  We returned to CHW the next morning, and by Wednesday afternoon, Joey was back at school, he didn’t want to miss his spring concert performance.

We considered ourselves to be blessed that we weren’t in the ICU with a child in DKA.  But, we were new to type 1 diabetes in the sense that our son is now 100% reliant on our ability to keep him alive.  When our grandson Cooper was diagnosed, we were confident in our daughter and son in-law.  We knew that they could handle this and Cooper was in good hands.  I didn’t feel the same way about us, well, about me.  Joe was fantastic, he wasn’t afraid like I was.  I kept thinking, what if I mess up? I could kill my son with the wrong amount of insulin.  I was scared to death, and I cried a lot.  I’d be driving down the road, and the water works would start.  I probably cried for an entire year.  I still get choked up when I see Joey telling someone about type 1, I’m so proud of what he is doing for the disease, and how well he is handling it.

There is so much to learn about type 1, more than I ever knew.  I went through a period of guilt.  My grandson was diagnosed in 2006 and although I went to the same classes with them that I went to with Joey, I still didn’t understand it.  Not until you have to live with it, do you really understand it.

I will proudly say that over the past four years, we have learned a lot, we have shared a lot by writing blogs about our lives with type 1, we’ve done a lot in terms of raising money for research for a cure, and spreading awareness.  Joey has been named the 2013 ADA Youth Ambassador, he has gone in front of law makers telling of his life and challenges with the disease.  We couldn’t be more proud of our 3rd son.  He is making such an impact on so many lives. We’ve met wonderful people that we would never have never met before, new friendships that will last a lifetime.

As we approach the 4th anniversary of Joey’s diagnosis, or as they say in the D-World, his Diaversary, we can be proud of what he has accomplished, and pray that the next 4 years bring even more exciting opportunities for Joey, and maybe even a cure, it would be nice to celebrate an anniversary of the CURE for type 1 diabetes.

Looking back at our son’s d-day, diagnosisfor a disease without a cure.

Seen first at: http://suited.myomnipod.com/therese/parent-and-grandparent-of-children-with-diabetes

Mother’s Day, May 10th, 2009. Normally we would have a family gathering for Mother’s Day, but this year was going to be different. Joe had to work, so it was just going to be me and the boys. I spent the day before with my daughter, so she was going to spend the day with her husband’s family. The boys and I were hanging out in the living room. I was reading the paper and they were wrestling around on the floor. My then 8-year-old Joey stood up and said, “I just peed in my pants.” We laughed and I probably said something like, “Next time don’t wait so long to go and this won’t happen!”

At about noon my daughter called and said she couldn’t stand to go without stopping in to say Happy Mother’s Day. They came over later and we started talking about an upcoming time when I’d be watching my grandson Cooper. I told her that I’d like to practice taking a blood sugar measurement, because it had been so long since I babysat him.

What happened next was nothing short of a miracle (I’ll tell you why I think so a bit later). My son-in-law asked my son Joey to be my guinea pig. I couldn’t believe it. I said, “There is no way Joey’s going to let me prick his finger!”  My son in-law then offered Joey a trip to the store for a toy if he would. To my disbelief he said “YES.” After all, how badly could it hurt if his little nephew did it? So as everyone watched, I tested his blood sugar. When I looked at the bloodglucose monitor, which said 466, I didn’t even flinch until my daughter grabbed my leg so hard I jumped.  Then I heard my son-in-law say, “Joey, go wash your hands and come back so we can try again. There must be food on your hands.” He washed and we repeated to get a 462. We were trying to remain calm, knowing that our lives were going to change yet again.

My daughter and I ran out so I could privately call a family friend who is a pediatrician. My daughter wanted us to go to Children’s Hospital – she was worried about his blood sugar being so high. Our friend said to stay away from there because it was during the swine flu outbreak. He didn’t want us taking the chance of Joey getting sick on top of having type 1 diabetes. I remembered what it was like two years earlier and all the tests that they put my grandson through. I couldn’t go through that again. Our friend told me to come in the next morning to see our pediatrician and we’d go from there. Like he said, “One day wouldn’t make a difference.”

The ironic thing was that I had Joey’s annual appointment already scheduled for 9:00 the next morning; they didn’t even have to fit us in. Our doctor confirmed that Joey had type 1 diabetes and it was the hardest thing I ever had to tell my little boy. I’ll never forget sitting in the room at the doctor’s office, holding back the tears so he didn’t get upset. When we told him, he cried. He knew what it was like to have type 1 diabetes – he’d watched his nephew live with it for the past two years.

The Miraculous Chain of Events

Here are the reasons that I think it’s remarkable and miraculous that the events leading up to Joey’s diabetes diagnosis happened the way they did.

1. My daughter wasn’t supposed to be coming over that day. She said she felt drawn to come.
2. Joey was starting to show warning signs, i.e. wetting his pants that very morning.
3. I had just taken medical leave to have major back surgery that next week. I would have been down for three months.  And, the doctor said if I would have had the surgery with Joey’s A1C where it was, he would have gone into ketoacidosis around the same time. Can you imagine my poor husband and family, having two of us in different hospitals, not to mention that I would have been crazy with worry about Joey?
4. Joey let me prick his finger. That was the biggest miracle of all.

Fast forward three years later: Joey is doing great.  He’s playing sports, participates in forensics tournaments (study of formal debate, public discussion and argumentation) at school and is getting good grades.  And he’s using the same OmniPod insulin pump System that my daughter so diligently researched all those years earlier. I feel like we were blessed with Joey’s diagnosis being delivered the way it was. We believe in miracles and choose to see them when they are presented to us.

 

Joey’s Birthday Celebration – Diabetes Ugly came Univited

Joey’s Favorite Birthday Treat

This year we celebrated both boys birthday’s together, it’s so much easier since they are only 9 days apart.  We always make the boys their favorite dessert for their special day.  This year Joey picked a Cookie Cake for his,  and just happened to mention to Aunt Jan that he also loves chocolate cake. Tony picked Aunt Jan’s Banana Torte.  She always makes Tony’s dessert, either the Torte or her famous Banana Creme Pie.  They are both to die for.  Not easy to dose for.

I ordered Joey’s Cookie from a local bakery, they gobbed on the frosting,  just like he loves it.  I was praying for the nutritional information to be on the bottom of the Cookie, no such luck.  Gonna be a hard one to figure out the carbohydrates, along with the  Banana Torte and Chocolate cake.  That cake was so heavy, and had chocolate chips in it, so it was like a double-double chocolate.  A nightmare. But so good. ha-ha

All the kids that were here wanted to dig into that cookie before we even had lunch.   There is something about a giant cookie with frosting that drives a kid wild.  Including Joey!  He wanted that cookie so badly, before dinner, and wouldn’t let up.  He was acting kind of sassy, so I had him give me a blood sugar.  He was in the 300′s.  That explained why he was acting the way he was.  Joey is a very mellow kid, so when he is angry, or sassy, I know his blood sugar is either to high, or to low.

It was a beautiful day so some of our guests were sitting outside, and a few of us were sitting at the kitchen table.  That’s where Joey sat down and insisted on having a piece of the cookie.  He wasn’t taking no for an answer, even though I explained that number 1 it’s before lunch, and number 2, his blood sugar was to high to eat anything, let alone a cookie full of frosting.

At times like this, I try to stay patient and understand what he is going through.  Like I said before, Joey is a great, mellow kid.  Not a lot bothers him, he is always willing to help me around the house, he keeps his room spotless, and he is very conscientiousness with things like his homework.  He truly wants to do the best he can.  So when his blood sugar is high, I try really hard to stay calm.  Today though, after being up multiple times during the night checking his blood sugar, I got a little snappy myself.  I had to put my foot down, in front of my sister in-law, my niece, my sister, and Joe.  So, in a nutshell, Joey stormed off, mad and probably a little embarrassed because I had to get firm with him.

The reaction from Joe was in defense of Joey, and my sister in-law took his side as well.  :)  Of course, Joey is her Godson, and she spoils him.  The day before they were at Joey’s school for Share Your Faith day, which used to be Grandparent’s Day until to many kids didn’t have Grandparents to attend with them.  So they changed the day to where you bring a special person in your life, you attend mass, then have snacks and an open house.  Joey always asks his Godmother to attend with him, they have a special bond.

I felt kind of ganged up on, even snapped to Joe that I am the primary diabetes care giver so butt out.  I found myself, defending my actions.  Which in retrospect I wish I would have been a little more understanding, but then again, how many times do I have to say “NO” before it sinks in?  High blood sugar is like the devil, it appears out of no where and is very ugly.  Everyone reacts differently to their blood sugar being high, and for Joey, it’s always been defiance.   I have actually gotten mad at Joe for losing his patience with Joey during a high blood sugar, its a tug of war, or a tug of emotions.

So, the moral of the story is that even if it’s your 12th birthday party, and you didn’t invite type 1 diabetes, it crashes the party.  But, we all got over it, Joey had his cookie cake, and chocolate cake, and we enjoyed ourselves.  And as I look back at that situation, I’m kind of glad it happened in front of others, it may have opened their eyes to another fact about diabetes, it causes chaos at times even though we try our best to not let it.  We say that type 1 doesn’t run our lives, we control it, but it’s just not always true, some days it gets the best of us.

The desserts

FOR IMMEDIATE RELEASE MARCH 29, 2013 American Diabetes

Youth Ambassador’s

FOR IMMEDIATE RELEASE

MARCH 29, 2013

American Diabetes Association Names Youth Ambassadors For Southeast Wisconsin.

BROOKFIELD, Wis. – The American Diabetes Association has named Joey Balistrieri and Cooper Wintheiser as the 2013 Youth Ambassadors for Southeast Wisconsin.

“This year we are excited to have both Joey and his nephew Cooper as Youth Ambassadors,” said Jacalyn Gillis, ADA’s Tour de Cure manager. “Both boys, as well as their families, are very active in the fight to stop diabetes. They will be great role models for everyone involved.”

Joey, 11, was diagnosed with Type 1 diabetes at age 8. His nephew was diagnosed three years prior so his family knew exactly what to do when they discovered that Joey also had Type 1 diabetes.  He has been a great advocate towards finding a cure for diabetes.

“I find that most kids don’t know what we have to go through and they think you can get it from eating too much sugar and that I can’t have any foods made with sugar,” said Joey. “I would love the opportunity to educate more kids on what Type 1 diabetes really is.”

Cooper, 7, was diagnosed at only 23 months. Doctors thought that he just had a bad case of the flu. It wasn’t until a trip to the emergency room and a blood sugar level of 1000, which is considered a medical emergency, that doctors diagnosed him with Type 1 diabetes.

As the American Diabetes Association Youth Ambassadors, Joey and Cooper will represent children all over Wisconsin who live with diabetes. They will attend Step Out, Walk to Stop Diabetes, the American Diabetes Association Annual Gala where they will be able to share their stories and bring awareness to the disease and participating with their team in the Southeast Wisconsin Tour de Cure June 15 at Grafton High School.

“I stand strongly behind diabetes research and enjoy showing and telling people about my disease,” said Cooper. “I want people to know that there was nothing I did to cause this.”

Joey attends Holy Apostles school.  He swims, runs track, plays football, but most of all loves basketball. He has also begun writing a blog about his life with diabetes.

Cooper attends Elm Grove Lutheran School.  He loves to watch hockey and soccer and play video games. He has been pricking his finger to get the drop of blood to test his blood sugar level since he was in kindergarten.