Kindred Spirits

Two years ago, before the boys started kindergarten, I attended a "Back to School" conference put on by my local JDRF (Juvenile Diabetes Research Foundation). I was super anxious about sending my four-year-olds to kindergarten, much less one that had diabetes. They would be turning five within the month,but they seemed so young. Thank God it was only for a half a day! To hand off Rocco to someone who knew nothing about diabetes gave me heart palpitations (literally).  I used the conference as a training class. It taught me what to tell the school and what paperwork I would need to fill out. I even met my friend Michelle, who was speaking that day. She is a great school advocate for kids with diabetes. It was very worthwhile.

 

But even more importantly, during the conference I met a man who said he had a boy with Type 1 diabetes who was in our new school. I was thrilled and eager to meet him. I needed him to tell me what types of things were already in place for his son. I introduced myself and we began talking about our diabetic children. Then, later in the conversation, he said something about his son being a twin. What? Could it be?

 

Yes! What are the odds? He said his Type 1 diabetic son had a twin brother. Then, something else happened. He said his son's name and wouldn't you know it was the same as Rocco's!! Seriously, what are the odds? No, his other son was not named Zeke, but this was really cool! I asked him a couple of specific school questions and he referred me to his wife. Haha! He gave me her phone number and I called her right away.

 

As soon as we started talking, we became fast friends. She has become a jewel in my life. It is so refreshing to speak to another mother, living the exact same life as you, isn't it? She and I talk a lot about diabetes, but also about how this will all affect our other sons. Diabetes has this ability to enter your life and take over like a new puppy. You have to feed it, maintain it, and keep your eye on it at all times or it will eat your couch! So it is nice to speak with my friend who has the same worries about each of her children. Since our guys attend the same school, we also can collaborate on our school plans. Finally, we can talk about how caring for a 24-7 disease can be stressful, daunting and exhausting, but how we wouldn't change our lives or our guys for the world. I treasure the times we hang out together! It's like a free therapy session.

 

On the flip side, we also enjoy watching all four of our boys share the same life. Recently, in the middle of a bounce house playdate, we had both kids with diabetes check their blood sugar. But, the cool part was when I looked up I saw the other two guys stood waiting patiently for the number to come up. I was so glad for Zeke have someone to stand next to during the blood sugar break! As with our life, the blood sugar number dictates what comes next, even for the kids without diabetes. Maybe they get a juice boxwith their twin (if the number is low), or maybe they can just continue to exercise (if the number is a little higher). Between the three pairs of people - moms, kids with diabetes and kids without- we are like kindred spirits walking the same path.

 

Man! Meeting this family keeps unfolding perks on so many levels. My friend and I are hoping the boys stay close throughout their lives. We hope they will find as much comradery as she and I have found in each other!

It was even more strange that the two kids with blonde hair have diabetes and the brown haired kids don't! 

getting ready for school

Ugh! Look at all of these forms...

 

Sorry it's sideways. You get the point. 

Each one represents a possible scenario whereby Rocco could be in trouble from his blood sugar going too low or too high at school.  I am starting to get nervous, as I always do when the school year starts. However, I do feel as if I am getting better at rallying people to care for Rocco. The pump breaking in the water and the 23 blood sugar have really lit a fire for me this year.

 

It seemed like this next year was going to be easier to trust the people at school to take my place and care for him during the day. Well, at least I thought so. 

 

One of the reasons was that the boys have made the decision to be in the same classroom (I kind of have been letting them choose each year). At first, I thought I wanted them to be in separate classes like last year. It worked well because during the school breaks when they were just starting to get sick of each other, the break was over and they went their seperate ways. Even if it was just across the school hallway!   But, I must admit, it will be much easier on me in the long run if they are in the same room. Especially during the school parties.  It was always hard to count carbs for Rocco's party when I was in Zeke's classroom. Each boy wanted me to be thier special mom and not go to their brother's classroom. The Mother's Day Tea was by far the worst. 

This picture sums it up. See, it's a nice picture of me and Zeke. You'd never even notice Rocco waiting next to us totally mad that we are not in his room! 

They each had planned such great things and when it was time to perform each thing, I was always in the opposite room. It ended in Rocco just coming in to Zeke's classroom missing at least half his party. And when we got back to Rocco's class, the party was over, the moms were gone, the room was cleaned up and all the kids were back at their seats. Rocco and I were devastated. 

So, if they are in the same room that means one party, two kids. Plus, schedules, homework and tests will be easier to manage if they are the same. The boys are comforted by each other but don't rely on each other. This is why it doesn't bother me either way to put them in the same rooms or separate. Whatever they feel is good for them is good for me. Such a hippie statement! Haha! So far, each year they have agreed on their decision.  Let's just hope that continues. Ugh! I dread the day when only one wants to be with the other. 

 

Also, this year seemed easier because the staff was well-versed on how to care for Rocco's diabetes. Rocco has two other children in his school with diabetes, so the library, gym, art, music and lunch teachers all know how to care for him/them.By October, the principal finally understood the severity of having three different kids with three fluctuating blood sugars every day. She hired an aide to care for just them throughout the day. 

Another reason this year was going to go smoothly was that full-time aide was coming back. She understood everything! All of the highs and the lows. By the end of the year, she could almost predict his blood sugars before the number came up on his meter. She was my angel! 

 

Finally, I felt like the school district was making some progress. The superintendent was making changes within the district that benefited all of the children with Type 1 diabetes. Such as carb counts for cafeteria food, being accepting of 504 plans and ensuring staff implement these plans. A 504 plan spells out the modifications and accommodations that will be needed for students with a "disability" to perform at the same level as their peers. For example, when Rocco's blood sugar is low he has trouble focusing because his vision gets blurry. He can not be expected to take a test when he can't read it. This type of information is in the 504 plan. Believe it or not, some schools give you a hard time about the plans that explain how to care for your child. Usually because it something they are legally bound to do and are held accountable. 

We were well on our way to a successful year! I was getting excited to get back to my blog full-time and start my new at-home part-time job and really make them both fly to next level! 

Boys same room - check! 

Rocco's "staff" trained - check! 

 

Then, over the summer, the superintendent quit, the principal retired and the aide told me she isn't coming back, the district is outsourcing the bus drivers and the teacher will be new. Shoot!

 

So now, here I sit trying to fill out all of this paperwork to explain how to ensure that my Rocco doesn't get too low or too high to a bunch of people that haven't even been hired yet! I feel anxious! 

Teaching someone how to care for a diabetic child is easy if they are only going to be in that person's care for a couple of hours. But, the overall responsibilities of the full-time aide are far more complicated.

 

One of the other diabetes moms said she might want to take the job (after I practically begged her!) But she changed her mind as we discussed how this would be really difficult for a number of reasons:

 

•

What happens if your own child has an emergency? You would never want to "ditch" the care of the other children.

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What happens if one of your children is sick for the day? Again with the ditching.

•

At some point, you just have to cut the cord and trust the schools to figure it out. Sure, we would all love to follow these little birds around throughout their day. We know best how to care for them in any scenario. It would be easy and convenient to take the job. But, at the end of the day, everyone needs to grow. The schools need to prepare, the kids need to trust themselves and other adult caregivers and the diabetes moms, well, they need to get their own life.

 

Anyway, so here I sit, shuffling papers, trying to coherently communicate what to do for Rocco in all of the different scenarios that may come up during the school year. Wish us luck! Of course, I will keep you posted! 

marriage during diabetes

                                          

Taking care of my twin boys has been such a wonderful experience. They are good children, with an old-school sense of how to behave. Not as in, "Children should be seen and not heard", but the kind of kids you can take to a nursing home to visit their great grandma and have them understand the moment is not about them.

 

I am proud of the nice little men they are becoming. But also, I am proud of myself. I have been“training” them since they were born. So, as I watch them react appropriately to situations that should be far beyond their years, I know I can take a little credit. Believe it or not, being proud of yourself can be hard for women and especially moms.  

 

I also believe that without a strong adult presence to create some structure, little boys can sometimes get lost. My hubby Michael provides this structure in a playful way, without stifling the boys. I am very proud of Michael. Without him, my children would be over-protected and to be honest, kind of wussified. Ha ha!

 

When Rocco was diagnosed with Type 1 diabetes at 22 months, our world changed (to say the least). At first, Michael, who is the realist, was devasted. He worried about Rocco’s struggle throughout his days but also wondered how we would pay for all of the medical costs that came with the disease. I have since learned that this is a normal male reaction. After the diagnosis, while we were in the hospital for three days, he focused on how to take care of his son as if he was studying for a board exam. The nurses said they had never seen such focus. However, I remember being angry at him for giving a crap how much this was going to cost. I remember being upset with him for not sitting with me and holding Rocco, our poor child was in the middle of struggling with shots, fluctuating blood sugars and living in a baby cage crib for three days. These were the concerns I had a the time. Every time I looked at Michael, he had his head in the Diabetes 101 book. 

 

The minute we got home, Michael immediatley went through our cupboards and threw away practically everything that had the word sugar in the ingredients. (We now know that diabetics can have sugar and that sugar is an important remedy for low blood sugar episodes).

 

He did all this while I just sat and held our son, in the ER, in the hospital, at home. I didn't learn, I didn't read, I didn't throw away sweets. I just sat, holding our diaper-wearing son.

 

During the sugar purging, Michael got frustrated and yelled at me.  He couldn't understand why I wasn't helping him. Looking back now, I think I was in a sort of shock. I am sure I was probably in the denial stage of grief. I couldn’t focus on the long-term impact on Rocco or on the probable financial impact of his care. Michael on the other hand couldn't see the current situation just the future one. 

Although I was numb when we first got the diagnosis, the reality of our challenge has hit home as events have unfolded. When a significant moment comes up, I feel it, I write about it and I share it. I think I am the type of person who isn't strongly affected by things until I actually experience them. I have a strong survival instinct that is powered by immediately looking at the bright side even when major events occur. My reactions can pop up weeks or even months later. 

For example, when my dad died during the month of April, I went into "go" mode. Selling his house, helping plan the funeral, and tying up his last loose ends. It wasn't until August of that same year that it just hit me like a ton of bricks. I felt the pain and the loss then, four months later, after all the jobs had been complete. 

After six months of his diagnosis, we got Rocco's pump and a supply order bill came in the mail. It was only then that I felt the major financial impact. I realized then that this was the fear Michael felt in the ER, minutes before the doctor confirmed the diagnosis.

 

A couple of weeks ago, four years after his diagnosis, Rocco's blood sugar reached 23. I felt that. Big time. Thanks for letting me share my feelings about that. Michael couldn't put his finger on exactly why this was so life changing for me. I cried/sobbed for three days. I couldn't get a handle on my sadness. Until my friend suggested that I am finally mourning the loss of the life Rocco would have had without diabetes. I think it was so difficult because I saw first hand how very life threatening this disease could be. To be honest, I am still not sure how he is going to handle it all when he is by himself as an adult.  I am hoping this will be clearer as he grows and I meet more Type 1 adults. This reality is what Michael felt in the first three days in the hospital.

 

When I turned down a job that was something professional I used to do before I had the twins, I mourned the loss of the career woman I once was and that I always thought I would be again.

 

Finally, when I sent the boys off to kindergarten and waited with baited breath for their first day to be over just so I could have my little birds back in my control, I felt the weight of the responsibilty of the diabetic 24/7 care that I will happily carry to Rocco’s adult life.

 

Sometimes, it amazes me that Michael and I can work so well together during the day to day operations. I thank him often for being so attentive and studious during the hospital stay in the beginning. As with many parents everyday, I only hope that if we work together Rocco and Zeke can become well adjusted to a lifestyle that most days is not well adjusted. As with any partnership, espcially ones that are being challenged everyday with needs that are not the norm, there are days when our differences can cause big-time friction. But so far, for us, this hasn’t often been the case. I am truly thankful to have Michael as my rock. I wouldn't want to do this on my own.

 

Having a child with Type 1 diabetes can be daunting for the two of us. I know that sometimes the responsibility lies only with one parent. I write this blog in part to help those people feel less alone. If you read this blog and you are a parent who is the lone caregiver for your child, please know that my respect for you is immeasurable. I take my hat off to you.

 

No marriage is perfect. But I am proud to say that Michael and I are somehow getting each other through it. I am hoping that love, respect and a sense of duty carries us all the way to the old folks home!

Ok so here are some pics of us over the past twenty years. Feel free to make fun of hair or clothes styles! Life's too short not to laugh! 

One of our first pics. We were only dating here for a month! We were crazy about each other! 

This is the day we moved in together. Notice the gross fridge! There. Did I distract you from the size of my shorts? 

This is the day we got engaged. I waited six long years. We got married a year later. 

Ahhhhh.... Grad day! 

I still do! 

Honeymoon in Costa Rica. This still one of our favorite days. 

DINKS! Double Income, No Kids... Hawaii

New York, New York!

Yes, after five long years... Dreams really do come true! 

We still do! 

spray tan

 

                                  

Ok, time for a funny moment.

I am 25% Norwegian. Therefore, I have pale skin. In the winter months, I look especially translucent. I am proud of my pale heritage except for one time of the year. Bathing suit season... Dum,dum,dummmm.... Yes, like 95% of the world's population, with the exception of those who work out and those who walk on a runway, I hate bathing suit season.

 

I was complaining one day about this very topic, when my friend said, "Tan fat looks better than white fat. Why don't you try a spray tan?"

 

I had done a spray tan a couple of years ago and I liked the way it looked. Sitting in the hot sun, wondering the whole time if this is the moment  that you are getting skin cancer, is not my idea of fun. Lying out in the sun, for me, is like Chinese water torture. The whole time I am lying in the sun, I obsess over the fact that I probably giving myself cancer, while I am burning my skin. I never actually tan. I burn. Then I peel. Let's face it, Norwegian people are not known for their awesome tans!

 

Plus, every time I go in the sun I get a new "beauty mark" (i.e. a gross mole). By the way, whoever called these things beauty marks? Thanks anyway. If they really were beautiful, I would be walking on a runway by now.  I will just keep it real and call them moles.

 

Another reason I do not like lying out in the sun is the sunscreen. I mean, who really knows which one is the healthiest? Lately, they have labeled them all as unsafe. Who knows?

 

Anyway, a couple of years ago, I went to a tanning place. You enter a dark dressing room and then a recording tells you to hold your breath, just as a blast of cold liquid is sprayed on your naked body, causing you to gasp while inhaling the liquid into your lungs! What is this liquid anyway? Probably more cancer-causing chemicals! Then you are told by the recording  to turn around and subject yourself to the same torture again.

 The only reason I subjected myself to the process is because I am an efficient seeker of beauty. The whole thing was over in five minutes and I was on my way. Sticky, albeit, but on my way. No sweaty beaches, no chemical sunscreen, no sunburn and no sitting in some dumb salon pretending to care if I am wearing the latest fashionable item. Efficient beauty is how I like it.  So what if I spent the next couple of days smelling like vegetable oil! I was happy to have a "healthy" glow.

 

So this year, I took my friend's advice and made an appointment to acquire a healthy glow yet again. This time, however, I decided to go to a tanning place that uses a real person to spray it on. I thought this would be better than the black dressing room with the recording. Plus, I thought maybe she could paint some tight ab muscles on me. Lol!

 

On the day of the appointment it started raining. I brought the boys with me to the salon and made them sit in the waiting room. I went into the spray tan room. No black dressing room today, it was  more like a doctor's office. It was better than the black dressing room, although the lighting  was fluorescent and made the atmosphere somewhat clinical.  Standing naked in this light was anything but (pun intended) flattering. I was told I could choose to leave my underwear and bra on, but she said most people just leave their underwear on and bra off, so they don't get tan lines on top. I did just that.

 

The twenty year old perky (of course) spray tan girl  walked in. Although  she was actually very professional and nice, I wished they  had hired someone more like Maude from the Golden Girls TV show to do the job. I didn't  enjoy having to get naked in front of someone as young and perky as (let's just call her) "Tiffany".  You get the picture!  

 

But, I needed to "tan the fat", so I sucked it up. I cracked jokes to distract "Tiffany" from my 41-year-old white, peanut butter and jelly loving body, which was now shining under clinical lighting.  But who was I fooling! It was really embarrassing! But, I just kept my head held high and acted like this was perfectly normal. She told me to stand forward with my arms in the air while she sprayed, then with my arms down.  There were a myriad of different positions.  My favorite was when she told me to face away from her and  sort of bend forward, so I wouldn't get a streak of tan under my butt... OMG! Where is the black dressing room with the recording???

 

Despite the humiliation, once she finished I was thrilled. I was so happy to get it all over with in about 20 minutes. Done. Check! The boys were still patiently waiting in the room that was just outside the door. When I came out with my newly tanned skin, Zeke  looked at me  and said "Mom, did that lady paint you orange?" Oh, God!

 

As we started to leave, I looked outside.   It was now pouring. I do mean buckets. Hard, huge raindrops with wind. The "Tiffany" girl told me to take her umbrella, cover myself, go to the car, then pull  towards the door and she would run out to get the umbrella. I told her I would park close so she  wouldn't get wet. HA!

 

The minute the boys and I got outside, we got hit from every angle. I was struggling to determine which angle the rain was coming from, but I was getting pelted from all angles. As for the boys, they were on their own. Normally, I would cover them and sacrifice myself, but not today little people! Run! is all I said to them

 

Finally, we get into the car. I kept one arm out of the car in order to close the umbrella.  It was getting pelted by the rain . Because my hands had lotion on them and were slippery I was having difficulty closing the umbrella. Closing it took  at least 45 seconds.  In the middle of it all, I dropped my keys almost under the car! Now  I had to expose my entire upper body to the wind and rain  in order to retrieve  the keys. I  finally got the keys, finally closed the car door and then looked at my arm. The spray tan was dripping down my arm. It was like bad mascara in a horror movie from the seventies! My tan was ruined! I tried to mop it up with an old napkin I found in the car.  But like any paint job, once you start touching things up the whole thing just looks worse.  I returned to where "Tiffany" was waiting for her umbrella and I tell her my tan is ruined. She asks me to come back in so she can re-do my arms.

 

Once I got in and took off my shirt, I realized the rain had soaked all the way through my shirt. I was as spotted as a cheetah! I pulled up my pant leg, same thing. Cheetah legs. Ugh!

 

No! These gross feet are not mine, but mine looked like these! 

She told me to use the  baby wipes that were on the counter and wipe off all of the tan! She would then re-spray me. Omg!

 

So, I did. I should have counted how many blessed baby wipes it took to wipe it all off. Fifteen minutes later she returned to my mostly-naked, half-spray-tanned, wet-haired, hair net wearing self! Seriously.

 Guys, if you had any fantasies about two hot chicks spray tanning each other,hold on to that vision, because it truly was not the reality. 

This is what I was imagining...

This is what It was like...

Despite all that happened, I was glad I did it. My funny friend was right, tanned fat did look better than white Norwegian fat!