Dr. Rep. Chaffetz,                                                           

                To begin to explain how our lives have changed since Ty was diagnosed over two years ago is not possible in the two pages I am limited to.  But, I'll certainly try.

                Our youngest of five, Ty has always been a favorite among his siblings, receiving seemingly more "gushings" from his older siblings, friends, relatives, and admittedly, us (he's the baby!).  So imagine the concern my husband and I had when, on a business trip to CA in June 2012, we received a few concerned phone calls regarding our baby Ty. The aunts who were watching him while we were away, talked of his incessant thirst, his diapers being filled to capacity in the matter of minutes, his loss of appetite and his grumpiness. Ty?  The fun-loving, full-of- energy, happy-to-be- with-anyone little boy was now inconsolably unhappy? Perhaps he was coming down with a cold. Perhaps he was drinking a lot because it was a hot summer. All the rationalizations went through my head. My heart knew better.

                Upon arriving home, my husband and I saw there was a noticeable difference in Ty's appearance. In only a week, he  had lost five pounds. This concerned me the most. I called my mom, who knew more about diabetes since my youngest brother is diabetic. She confirmed the signs I already knew, yet I still wanted to hope for something else. My mother-in-law, ironically, is a juvenile diabetes educator at Primary Children's hospital. After our trip, she came to our home, armed with meters, to test Ty. I found out my baby had a life-threatening disease in my living room. From there it was a blur of nurses and numbers, trainings and testing, carb counting and heart breaking. It felt like a death. I mourned the life we once knew. I feared the future that lay before us.

                Luckily the moments of despair were just that.  Moments.  Shortly after we returned home from the hospital, I decided to turn FEAR into FIGHT.  I heard about the JDRF's Walk to Cure Diabetes and decided to put my efforts into raising money for a cure. Only a few weeks after Ty's diagnosis, the Walk was a way to focus positive energy toward a common goal with the hundreds of families with a T1D child, all in an effort to hopefully cure this horrific disease.  Unfortunately, the first Walk we did, Ty was sick with the stomach flu. We attended, but ended up admitting him to the hospital only hours after. 

                You see, a common virus for a diabetic is not common at all. It's life-threatening.  One moment I wish to forget, but know I never will, was  a few days after the walk, after we had been discharged from the hospital. Ty was still not better and was having non-stop vomiting/diarrhea.  He couldn't keep anything down, which for him meant dehydration and dropping blood sugars. I sat on the kitchen floor, sobbing, pleading with my 2-year old to eat or drink something. You can't rationalize anything with a toddler, especially a sick one. He simply didn't understand. I prayed and the answer came in the form of a loving neighbor and McDonalds French fries. She came with her kids, showed how "fun" eating this "fun" food was. With a little peer pressure, he ate a few fries and I wept in gratitude.

                We've taken part in three Walks now and have raised thousands toward JDRF research. Our team: Team Ty-Ty. Our motto: "If at first you don't cure, Ty-Ty again." Part of the fund raising/awareness is that we decided every year on July 1, the day of Ty's diagnosis to hold a neighborhood BBQ. Neighbors  come together, enjoy good food and visit in the shade on a summer evening. It has been a great success. We wanted the tragic memory of that day in the hospital with our young son to be turned to one of hope.  Also, every year during Diabetes Awareness month (November) I flood my feed on social media of facts about diabetes, with the hashtag #diabetesawarenessmonth. I've received a lot of positive feedback from friends, many of whom were unaware of the facts I post. My hope is to debunk the myths that circulate regarding diabetes and to raise awareness.  I've also had the opportunity to teach my children's (T1D and non) classrooms about diabetes. It has warmed my heart to teach such impressionable minds, inquisitive and curious about what Type 1 Diabetes truly is.

                There is no normal in this disease. For no rhyme or reason Ty's blood sugars will yo-yo, bouncing from 400s to 40s in the matter of an hour. It is a disease that is extremely difficult to predict. Technology is getting better at trying to predict the fluctuations. There have been some God-sent medical advances over the last decade, made possible through JDRF research. Ty now wears a pump. It's almost as if one of his vital organs is strapped to him 24-7, managed by me and powered by AA batteries. It's not without its imperfections, but it has been extremely helpful in Ty's diabetic care. Because Ty eats so often and is picky, I'm able to give his insulin through a remote, sometimes in increments depending on if he finishes his meal, sometimes even when he sleeps to bring a stubborn high blood sugar down. This has eliminated the sometimes 6-10 shots a day that we were administering prior to the pump.

                The other device we are attempting to get right now is the continuous glucose monitor (Dexcom). I've spoken with several families who believe this device has saved their child multiple times. Our insurance has now denied us two years in a row, claiming Ty is too young. This contradicts the FDA's declaration from February of this year, which claims this is beneficial to anyone over age 2. My insurance claims they must be 8, so we are appealing their decision. I can't imagine anyone benefitting more from this device than a young child. It is children who need it! Often they can't vocalize when they are high or low, but a quick glance at the monitor would tell me where his level is at any given time. It could even eliminate the middle-of-the-night blood sugar checks as it will alarm if he goes out of his specified range.  Yes, I wake at 2:30 a.m. daily to monitor Ty's levels and often he is dangerously low. This constitutes administering carbs (juice and crackers) through a sleeping mouth. Though a challenge, I'm willing to go without a full nights' sleep every day of my life if it means Ty will stay in range. If he drops too low, he could have a seizure, go unconscious or even die. I'm not willing to allow that. A Dexcom would sound an alarm should he dip too low or go too high. That way, on the nights he stays in range, we both are able to have a peaceful night's rest.  It will also allow me to see what his levels are, remotely, when he starts school next year. I can't begin to tell you the assurance and peace that would provide.

                My main hope for Ty's future is a cure. I believe it is possible in the very near future, but only if we get continued support from the Federal government. Until a cure is discovered, my hope is to have access to devices that will aid in his care, all of which will require continued Federal funding. My hope is that he will live a normal life, able to participate in sports, eat what he wants, uninhibited by this disease. My hope is that Type 1 Diabetes will not define him, that it won't be a even a dent in his armor, but the conduit that will make him a stronger, even more powerful individual.  Please continue funding for Ty and millions like him so that his quality of life, or life itself, will not be threatened. Above all, my hope is that Ty will love his life, embracing the challenges that come with it, and be a voice for change in the world.......a world without Type 1 Diabetes. 

Sincerely,

Melody Hillam (Mom)

Venting

Here I sit, surrounded by clutter.  There are dishes in the sink, laundry needing folding, ironing to be done, the list could go on.  Yet, I had to sit and write.  I need to vent.  Bear with me as I have a pity-party, which is so often the case.  I figure no one really follows this blog anymore, since the last post was 8 months ago, so I can vent to cyberspace and no one will mind, right?  Here we go.....

Today is a beautiful February.  That is not typically an adjective that goes with this month, but today is different.  The inversion has cleared from last night's storm.  The world has a fresh few inches of snow and the sun is beaming in all it's glory and you, my Ty-Ty, are at the neighborhood preschool.  I just dropped you off, with your pack of gear (snacks, juice, meter, etc) and with the instructions (what your BG is, what to do for snack time, when to call me, etc.).  This is a good thing.  I'm glad you can be like your older brothers and sisters, attending a neighborhood preschool as they did.  What has my panties in a wod today is the mass text I received from a good friend yesterday.  It reads: "It is time for another adventure!  Tomorrow at 9:30 - snowshoeing....let me know if you can come."  These little "adventures" have been happening for a few years usually take place around someone's birthday, tomorrow being my good friend who sent the message.  There have been fun days of skiing, hiking, mountain biking, etc.  When I read the text I got so excited!  I have always wanted to try snowshoeing and have been determined that this year I was going to try it, by golly! 

That's when the realist in me speaks up. "Ty has joy school.  He is going to ____ house."  I love the joy school moms--they have all been amazing with your diabetes.  Some are more comfortable than others.  Today's mom, however, is not one of those moms.  She is wonderful, but knows little about the disease and needs a hand when it is needed.  That is expected and I've been totally fine with it.  Until today. I knew the truth of it.  I couldn't go far.  I would need to stick close to test you or run over should she need me to.  My text in response: "I SSOOOO want to say yes to this, but I think I'll have to say no. : ( : ( : (  Not sure that _____ is 100% comfortable with diabetes, enough for me to be unreachable.  So I should probably be accessible.  So sad though!  I've always wanted to try snowshoeing and thought this would be the year. : ( Thanks for the invite though."

Then the sadness kicked in.

Therein lies my pity party.  So much has changed over the last year and a half since you were diagnosed.  One noticeable difference is that I don't get these sorts of invites as often.  I think people figure I can't go because I'm tied to you, which is 99% true.  Still, there is that 1% chance that I could possibly make an outing work. The odds are rarely in my favor. The selfish side of me thinks "poor me" as I sit home in my messy house, thinking of my friends laughing, muscles active as they snowshoe on this clear, sunshiny winter day.  I grow angry once again.  Not angry at you. Don't misunderstand--I don't resent you, my sweet boy.  It's this #*%$@^#* disease!!  This disease with so many unknown twists and turns, where everything can change in an instant, where to those without the knowledge to care for the disease, may not notice the signs of a low or what to do if you're high.  This is what keeps me home bound.  I know it's the right choice.  But still I get angry with diabetes.  It has taken my social life, my joys, my breaks from T1D (is there ever one?) away forever.  At least that's how it feels sometimes.  Today anyway.

So once again, we plug along.  Today will pass and I'll get over pitying myself. I hope to keep some sort of a social life as the years progress.  But even if I don't, being a mom to you is worth every sacrifice this disease makes me give.  I look at the picture above and think, for you, I'd do (or not do) anything. 

See?  I feel better already. 

Vent over.

Happy Diaversary

I think about this blog daily.  In my runnings around, in my quiet moments, in the moments when I want to scream about the frustrations of diabetes knowing this may be the only safe outlets to my emotional ramblings.  Ty, tomorrow is your "diaversary".  July 1, the day that we discovered you had Type 1 Diabetes one year ago.  The day we took you to the hospital.  The day our lives changed.  There couldn't be a more fitting time, to resurrect this blog after an eight-month hiatus. 

Much has changed.  Much has stayed the same.  I just can't believe it has been a year.  Your diaversary.  The word is a weird word.  It underlines in red even now because, quite frankly, it's not a real word.  It's not all that easy to say either.  I joined a Facebook T1D support group right after your diagnosis and this word, "diaversary" is talked about quite frequently.  To many in the diabetic community it is a day of celebration. It is a day when parents take their T1D out for ice cream, given gifts, celebrated if you will, as a way to "stick it" to the disease. When I first heard it, and the traditions that many parents have started with their T1D, I'll be honest, I thought they were crazy.  Who wants to celebrate the day that brought so much heartache, tears, anger and change?  I don't!

It was as time passed, and the nearing of this one-year mark for you/us, that I began to understand.  This year that, in hindsight, I would never, EVER want to repeat.  It has been a year of so many questions, so many trainings of all things diabetic that I didn't want to do but I knew I HAD to, a year that put you in the hospital three different times, a year that felt like we were walking through thick, black slop, where as soon as I saw the other side of the riverbank and felt like we were making ground, the black sludge stopped us in our tracks and pulled us down for yet another reality check.  Yet, somehow, some way we trudged on, pulled ourselves up onto that lush green riverbank, surrounded by all that is living.  That's when I grab you up into my arms, squeeze you hard and kiss you all over your face, happy that we pulled through the muck together and that we too, are living.

I finally see the reasons to celebrate.  Tomorrow we celebrate you, your bravery and health. A year ago, you were a very, very sick little boy, lethargic, irritable, not wanting to eat anything but drink everything, losing weight by the minute and urinating through your diapers every 20 minutes. A year ago, part of you was dying, being killed off by your own little body. Doesn't make much sense, does it?  But guess what?  You made it!  You made it through your first year, which, from what I hear, is the toughest year to get through.  You've tolerated hundreds of shots, site changes, and finger pricks, which at your age is not small feat. You've grown 4.5 inches and put on over 12 pounds! You are playfully energetic (almost too much so!). You are a happy little boy, still drawing everyone in (yes even strangers) with your likable personality and charm. Your A1C has come down to 7.5 and the doctors and family members say you are a vision of health. 

So, how will we celebrate?  I decided to celebrate your special day differently.  I'm throwing a neighborhood dinner as a way to raise money for the upcoming JDRF Walk for the Cure.  All money raised will go toward research, in hopes that you and millions like you, will not have to live with this disease the rest of your life. All who are coming know you and love you and will come to celebrate your life with us. Lots of work to prepare for tomorrow and I'm hoping for a good enough turnout that I can make this our new tradition every July 1. What do you think? It will forever be a special day in our lives, not one to be mourned, but one to be celebrated. Yes, tomorrow Dad and I celebrate that you are still here with us because there were at least a few times this last year where we weren't so sure you'd be able to stay with us. 

So thanks for staying with us.

Happy 1 year Diaversary Ty-Ty.

Let's sit in the green a little while together.

Pump Anticipation

The surprising first words out of your mouth one morning a few weeks ago?

"I wanna pump."

What?

Seriously?

How in the HECK do you even know what that is?

Sometimes I think your spirit just knows what to tell me,

knows what is best for your little body.

You have to voice it to knock me upside the head and get me to listen.

We had done the saline trial, but it was the same horrific weekend when you ended up in the ER with the stomach flu.  Needless to say, it wasn't a great trial.  BUT, you were introduced to it and Dad and I at least were convinced that you wouldn't yank it off and pull the site out every two seconds.  In fact, you were amazing with it. 

So we ordered one.

Supposed to get it on Nov. 20

So why is it that I'm having such a hard time with it? 

One mom I met said having her T1D child attached to a tube all the time just screamed, "Sick kid here!"

That sort of stuck with me.

Not sure I like that idea. 

Especially when I'm trying SO hard to allow you to live a "normal life". 

I don't want the curious eyes and the pity of strangers.

Because I don't want you to be labeled.

Ever.

"The sick one."

"The one who could suddenly go into seizures or a coma if he doesn't eat enough."

"The one who has to be pricked every 20 min if he runs around at the park with the other kids."

I don't want any of it.

But it is when you voiced your desire, (whether or not you fully understood that desire at 2) that I realized that it's not about me.  And it's not about those curious, pitiful eyes.

It's about you.

What is best for you.

I am taking a jump and hoping it is the pump.

My hope is that it will help level you out from having such outragously fluctuating numbers.

That it will allow me to bolus in such minute increments that you can eat virtually anything.

Grazing will be allowed again! Imagine! (withing reason of course)

I won't have to turn down the Smarties offered to you by the grocery story clerk, making both she and I feel horrible when I have to explain that you have diabetes--I'd just simply type in the carbs! Wallah!

I can bolus you through a remote without you even knowing-Ha! Amazing!

Best part?

No shots.

Because lets face it, although you are great with them, you also hate them.

And so do I.

So here's to another change

only months after the drastic change of diabetes has brought to our lives.

But can we wait four weeks?

How many more shots between now and then?

Only 140-ish

We can do it, right?

Until then,

let's both find patience with the pokes!

Your Reflection

The other night, as I was getting you ready for bed, I was preparing to wash your hands (anticipating the middle-of-the-night checks).  You seemed to be in a good mood, as you usually are.  I lifted you up to the sink and turned on the faucet.  You looked at your reflection in the mirror, then out of the blue, you said, "Diabetes."  It's a word we've practiced with you only a few times, but I was shocked to hear it come out of your mouth, especially with your limited 2-year-old vocabulary and ability to form words.  

Immediately my heart sank.  It ached with sadness once again.  

It begged the question: Is that what you see when you look in the mirror?  Is it the disease?  Or the boy?  

My challenge is (and will continue to be) raising you in a way that you will see so much more than diabetes when you look at your reflection.  I hope you will see a confident, active boy.  A boy like every other boy, able to do anything you put your body and determined mind to.  I hope you will see the boy who loves cars,  Buzz Lightyear and every other Super Hero, a boy who loves to swing, blow bubbles, swim, run and mimick everything his older brothers do.  I hope you will see beauty in God's creation of your body, ever-grateful to Him that you have a healthy body thanks to the advances of modern medicine, again provided by Him who knows and loves you dearly.  I hope you will see that you are my son, a brother, a grandson, a cousin, fitting into this family perfectly, like every other child.  Above all, I hope you will see Ty, a boy who is loved like crazy, by everyone around you.  

Because you are.  

So, Ty, please don't see diabetes when you see yourself.  You are so, so much more than that.

Please see you.

First sick day

I haven't written in a while.  I don't feel badly, however, because my absence here, on this blog, only indicates that my care for you has increased.  It had to. Diabetes has given us all a beating lately.  

I wouldn't want to relive the last few weeks for any amount of money in the world.  You got sick with the stomach flu.  It is something I've dreaded from the day of your diagnosis.  I've heard from doctors, nurses, and other moms of T1D kids how awful it is for a diabetic and it is something I didn't want to face until further down the diabetic road.  Much further down.  When I was a bit more familiar with the disease.  Didn't get so lucky.

Last week you started having diarrhea, then vomiting, then rather quickly your blood glucose plummeted because you refused to eat or drink anything.  I was scared, didn't know how to keep your levels up.  Grandma, being so knowlegable as a juvenile diabetic educator, kept close tabs and was always available via phone and told me to call her no matter what time.  She worried about ketones showing up in your blood, something I still know very little about.  So we started to test your ketones every 3 hours.  I took Grandma up on her offer one "night" at 2 a.m. when the ketone meter read 1.8.  She had informed me if it reached level 3, we'd need to take you to the hospital.  She also informed me that in order to get the ketones down, we needed to somehow give you insulin, which meant your levels needed to be at least 250 before we did that.  Since you wouldn't eat, getting you to 250 was a challenge.  Are you starting to see the frustrating cycle I was in?

The next day we were able to give you a tiny bit of insulin, which helped bring your ketones down.  By Saturday of last week, after struggling and begging for you to eat ANYTHING (you even said NO to candy, popsicles, donuts, juice, chocolate milk, you name it) we finally had to give you the Glucagon shot to bring your blood-glucose within range.  And not just one dose, but four!  This was all during the Race for the Cure so, unfortunately for everyone who came out to support us, I was rather distracted the entire time.

After we got home and saw just how ill you were, still not eating, we decided to call the nurse on-call.  She advised us to go to Primary Children's ER.  We grabbed a few things and headed down the all-to-familiar road to Salt Lake.  Halfway there, you broke out in a sweat and started whining, lethargically falling asleep.  I checked you.  136--so I let you fall asleep.  20 minutes later, after we had checked in at the hospital, I checked you again in the waiting room.  68.  That was a huge drop in just 20 minutes.  I was going crazy, anxious for them to give you an IV ASAP to get your levels up and get you hydrated, because I just didn't know what another 20 min would do to you.  As the nurse tried to find a vein, I remembered all too well the last time you were dehydrated.  I loathed that moment when you were 8 months and I still do.  Watching the nurse dig a needle through your tiny hand, trying to find a plump-enough vein.  After a failed attempt in one hand, she moved to the other.  More digging.  Are these people incompetent or what?!  Find the dang vein already!  I had to refrain from saying something (or fiercely socking her in the face) while you screamed in agony on the stretcher. They finally found one and started the IV with fluids and glucose. I could relax for the time being.  Your daddy was a great support for me.  Had he not been there, I'm sure my violent side would have shown herself.

We were in the ER observation room overnight, a bit more than 24 hrs.  I stayed, Dad went to be with the other kids.  I actually very much disliked this area of the hospital.  I felt like no one knew (or cared) about your diabetes.  I had to find my own juice when you were low (like 52!) and when you were, and I told them, they seemed to shrug it off and I didn't see my nurse for another 15 min. Yep, Mama Bear was not happy.  But, looking on the bright side, they did get you hydrated and injected you with some glucose water, you had a great nights' sleep.  So, I guess not ALL bad.  I was as anxious to get home as they were to send me, but on Sunday, as they were about to discharge us, I mentioned to them how I worried you still weren't eating on your own. They just told me to call with any questions.

Should have listened to my gut.

Monday was awful.  You were back to plummeting blood-glucose numbers, spilling ketones and still ingesting no carbs. I finally broke, sobbed, pleaded with not only you to drink, but also to God, that He would intervene. I had done everything I knew how to do and I simply couldn't do it anymore.  I had to put it into His hands. His sweet repose came through a dear friend, who dropped everything when I called and brought her kids and a huge bag of McDonalds junk food over.  I suggested if she bring her kids, peer pressure might do the trick.  I set out a blanket on our family room floor and tried to get you excited about having a picnic.  It did the trick.  You ate a fry!  Then you ate 2, then 3, then pretty soon you had taken a few sips of fruit punch and eaten quite a few fries and one disgustingly beautiful not-so-chicken chicken nugget.  It was enough to bring your levels up and allow both of us a much-needed afternoon rest.  I will forever be thankful to Ally for her actions that day.  It is because she ACTED that you were able to eat.  Those fries were a start.  So many others did so much that helped ease the burden.  Taking other kids while we are at the hospital, bringing in meals, or a gallon of milk to an empty fridge.  After that day, you slowly started to eat, regain strength and after a few days, we were able to dose your insulin regularly. 

These are days when I hate diabetes.  Your sick days will never be average.  A simple flu virus suddenly becomes life-threatening to you.  I'm emotionally spent.  Tears readily spill these days.  I avoid people.  I see the looming dark clouds edging closer by the moment.  I know those clouds, and they are not friendly.  At times I feel as if those clouds would swallow me whole.  They have before.  They've kept me in the dark place for quite some time.  Luckily I always find my way out.  I'm trying to fight them away, but my fight is feeble, my strength spent.  I don't want to go back to that dark place.  You know one thing that keeps them at bay?  It's your hugs that you so readily give.  You are the only child in the family who will gladly,willingly, seek me out for a long cuddle.  You know how to fold your little body around mine, to fit your limbs so perfectly in the crevices of my body.  It is healing and I love it.  To me it is heavenly.  Never stop. It brings peace to my limping soul, picks me up and helps me trudge on.

Ty-Ty, together we'll make it. 

Walk to Cure Diabetes

We have formed a team (Team Ty Ty) for JDRF's Walk to Cure Diabetes walk in just 4 weeks.  We plan to be huge advocates in helping find a cure, so this is just the beginning!  If you follow this blog, please donate and help us, if even a small way, to find a cure for this disease that does not rest.