My Night.

Dark, quiet house. 

Its 2am

buzz, Buzz, Buzz, BUZZ, BUZZ (my alarm gets increasingly louder as it goes… SO annoying)

I wake up – smack the alarm.

Hubby is lightly snoring next to me.  He didn’t even hear the dang thing.  This is how he feels when it’s his night for checks and I sleep through his alarm.  Hrmph.

I get up.  Stumble down one hall and on to the next all where the kids’ rooms are.

As I open the door to my sleeping son’s room I immediately listen for his steady breathing.  He is snoring louder than his daddy… the thought of that makes me giggle a little.  Maybe I’m a little punchy?

I dig his pump out from under him… he is laying on it… and check the reading from his CGMS.  120.  I am surprised.  His sugars have been stubbornly hanging in the low 200’s most nights, so this is a great number.  BUT… I don’t necessarily trust it.  I notice he is laying on the arm that has the sensor on it. 

I am thirsty… so I head to the kitchen to get a drink… and take my water back to the master bathroom where his test kit is.  I put the lancet in and poke my finger in the process.  That DOES NOT make me giggle.  New lancet.  OK – back to his room.  When I lift his little hand he jerks it back away from me.  Even in his sleep he knows what’s coming.  I get hold of it again… clean off one of his fingers.  I think I remember the middle finger being the least bruised.  Poke.  Wait for the meter…… 151.  Nice.  I’ll take that 30 points off since its 30 points in the right direction.  I cover him back up.  Roll him over so that the sensor can get some more fluid to it.   And walk out.

Back to bed.  But not back to sleep.  My brain finally engaged and now I am fully awake.  *sigh*  I know sleep will come again in an hour… or two. 

Just another night in the life of raising a child with type 1 diabetes.

Sugar Family Update... What We've Been Up To :)

I feel a bit like I have been neglecting The Sugar Kids Blog since I have been spending quite a bit of time getting my other blog up and running.  Have you seen it yet? Head over to Sugar Free For Me and check it out.  :)

There has been quite a bit going on, though, and I am excited about some stuff coming up!

On Thurs, Feb 10th I took the day off of work to attend a field trip with the Sugar Kids and Sugar Daddy.  :)  It was at a farm that we had actually visited before... but the kids are a year older now and we had SO much fun hanging and learning with their classmates.  It was a good day for me... I realized that maybe I need to take more days like that to just be a MOM.  Get out of the office and remember that I have two fabulous kids that I love spending time with... and who love spending time with me.  Here are some pictures from that day.

On Valentines Day I had to work, but we had a wonderful evening at home.  I made a YUMMY dinner, and got small gifts for all my valentines.  The Sugar kids were so excited when they opened their little bags to find pencils, small toys and of course - CHOCOLATE!  I love the little boxes that Whitman's and Russel Stovers makes.  They have like 3 or 4 pieces of chocolate and nutritional info is on the back!  What more can you ask for in a T1D household???  :)  The Sugar kids enjoyed their chocolate completely.. and I enjoyed watching them get such a special treat.

This past Saturday Sugar Daddy and I celebrated a belated Valentines Day.  The Sugar kids went to stay at Grandma and Grandpa's house and we went out to a nice dinner followed by a full night of uninterrupted sleep.  Heaven?  You better believe it!  :)

Yesterday was Presidents Day so both the kids and Sugar Daddy and I had it off!  Yay!!!!  We were busy.  We started out at the mall... along with about a million of our closest friends.  Apparently that's where EVERYONE ends up when there is a day off of work & school.  We had lunch and then got going.  The kids had made Build A Bear friends in their classroom for their Valentines Day Party at school.  So, we went to Build A Bear and got outfits for each of the friends.  Really cute!  After that we went to the play area, until they kicked us out to have it cleaned.  Next was Stride Rite for new shoes... and then Paradise Bakery for a cookie and milk snack.  They seriously have the best cookies ever.  Sinful, really.  Then back to the play area... at least the kids got to play off the cookies.  Sugar Daddy and I did a good job of sitting around and watching them.

Coming up:  Have I mentioned that Sugar Boy is a TOTAL Thomas the Tank Engine fan?  I am sure I have.  Well, it turns out that Day Out With Thomas is coming to Arizona!  Its the first time that the tour has come to our state.  We are surprising the Sugar Kids (Sugar Boy, really - Sweet Girl will enjoy herself but lets face it, she is not the Thomas freak that her brother is) with the trip in early March! 

So, that's it!  That's what we have been doing... and what we are going to be doing.  :)

Love is in the air...

We've Come A Long Way, Baby

Last Saturday was a GREAT day!

Sugar Daddy had to work for the morning and early afternoon, so I was solo with the kiddos.  I woke up knowing that we had a VERY full day planned, and I was ready to take the day on.  Sweet Girl has dance lessons on Saturday mornings.  Then, after dance its our new tradition to stop at Dunkin Donuts on the way home for a donut for the kids and an iced coffee for mommy.  After that I had planned to hand over the kids to Sugar Daddy for a couple hours so I could go get my hair done, and then we would all go to church as a family (since Sugar Daddy was playing mass that night) and dinner after that.

We did indeed go to dance, followed by our post-dance Dunkin Donuts trip.  (33 carbs in a glazed chocolate cake donut, in case you ever need to know...)  But sometime that morning I realized that the hair appointment was not going to work.  It was just too stressful to try and swing our schedules to do the kid hand-off, and I really didn't want to take the Sugar Kids with me.  Somehow having two 4 year olds bouncing off the walls (donuts do that to them...) of the hair salon while I was suck in a chair and with foil all over my head was just not my idea of a good time.  Tracy over at The Super Hero and The Princess had suggested a get-together at the Train park, and really that just sounded like SO MUCH more fun for both myself and the kids!  So I cancelled the hair appointment and we headed out to the park.

We had a GREAT afternoon.  While I enjoyed some good D Mama time hanging with Tracy, the Sugar Kids got in some great play time with The Superhero and The Princess.  The weather was beautiful and it was truly an awesome afternoon.  Diabetes even managed to behave itself for both me and Tracy!!  Here are some pics that Tracy took of the kiddos.  The one with The Sugar Kids holding hands with The Superhero is my favorite.  =)

After leaving the park, we headed to church with Sugar Daddy.  The kids were hungry so we got them each a banana from the dining room and they scarfed them down before it was time to head into mass.  The banana's were a little on the green side, but the kids didn't seem to mind.  I dosed for the banana and off we went.

We sat down at church and I went to check Sugar Boys number by glancing at Linkie (our CGMS).  Linkie was off-line... The sensor had expired and it needed to be re-started.  Darn it!  Oh well... he had just had a banana so I figured he should be fine.  Both the kids were whiny and antsy the whole way through mass, but that was to be expected... they were tired!  They had played hard!  Finally, just before communion, after shagging Sugar Boy out of my lap for the umpteenth time, he uttered the words that make your blood run cold... "Mom, I'm LOW!!!"  Of course this was said in a voice just above a whisper and with Sugar Boy on the verge of tears.  I grabbed the sugar box, opened the test case and got an alcohol swab with swiftness that surprised even me.  Less than 30 seconds after he had uttered those words we had a number.... 47.  I pulled a juice box out, got the straw in and had it to his lips in another 10 seconds. 

All of this is not uncommon for us D peeps... we live and re-live this scenario over and over and over again.  But, almost two and a half years after diagnosis I was able to do that entire scenario so quickly, so smoothly that no one around us even had a clue that there was something not right.  All they saw was a tired little boy and girl sitting with their mama, and mama doing what she could to keep them quiet during mass.  Only those sitting right next to us may have noticed the test being done and the juice coming out.  The other difference:  it used to really rattle me.  This saving of my sons life in the middle of church... the grocery store... wherever.  Now, its just something we handle.  Quickly, quietly, and without incident.

We've come a long way, baby.

PS - I figured it out later... I over-dosed for the banana.  It was an under-ripe banana, remember.  Yep - less sugar in those.  Ugh.  I should have thought of that.  Just goes to show no matter how far you have come... it's still all to easy to screw things up!

Dylan's Essay

When Brian and I were married almost 8 years ago, I inherited a nephew.  He had just turn 6 at the time.  Cutest kid you can imagine.  He was the ring bearer at our wedding.  When you looked at Dylan you couldn't help but smile.  There he was in that big church, a small boy wearing a tux, and walking with a limp. 

You see, when Dylan was 6 years old he was diagnosed with  Legg Calve Perthes Disease.  Its a rare disease that occurs when the ball of the thighbone in the hip doesn't get enough blood, causing the bone to die.  Over the years, Dylan has suffered from this painful and debilitating disease which eventually led to him having surgery in May 2009.  He had to give up a lot.  He was not able to play some of the sports that he desperately wanted to. He never knew when he was going to get up and have his leg lock up on him.  He and his parents constantly had to think about his activity level and whether or not he was going to pay tomorrow for having a bit of fun today.

Today, Dylan's leg still gives him a twinge now and then, but for the most part he is completely healed.  The surgery did its job and Dylan is your typical teenager.

But is he?  I would like to share with you, as a guest post the entrance essay that Dylan wrote for the high school he is applying for.  As part of the application process he had the choice of 3 different essay questions.  The one he chose to respond to was "Describe a person that has been inspirational in your life".  I hope you enjoy reading Dylan's essay as much as I did:

(To conform with the privacy policy of my blog, I have changed the essay to show my son's first name as Sugar Boy.)

The person who has been most inspirational to me is my cousin Sugar Boy.  Some people might find this surprising, due to the fact that Sugar Boy is only four years old. However, age does not matter when it comes to inspiring or motivating others, and my little cousin is a great example of this.

When he was just two years of age, Sugar Boy was diagnosed with Type 1 Diabetes.  From that moment on, his life was affected.  His daily life changed from being a normal little boy, to having multiple daily finger pricks, restrictions on what he can and cannot eat and having someone constantly watching over him.  From the beginning, he had to deal with both physical and emotional pain, but he made it through each and every day with a smile.  I admire him greatly for being able to make it through the difficult times of being a diabetic.

Sugar Boy is now four years old and has an insulin pump, but still requires many pokes and prods each day.  He requires a lot of extra care, and I try to help out whenever I can.  I am always on alert for something unusual when I am around him.  When I am with him, I feel like his life is in my hands.  It is a very big feeling of responsibility.

Sugar Boy’s entire life, as well as our whole family, has been impacted by this horrible disease and we have all been inspired to help find a cure.   There is a lot of research being done, and we continue to pray and participate in many events to raise money to help children like Sugar Boy, and to find a cure for this disease.  Sugar Boy has inspired me to do as much as I can to help every person like him.  He has taught me that it is possible to live with a disease like this and still have a good attitude.  I believe that if a four year old can deal with the emotional and physical pain of having Type 1 Diabetes, I can overcome anything with the right attitude and the help of God, family and friends.

Along with inspiring me with his attitude, and inspiring my family to help find a cure for Diabetes, Sugar Boy has also taught me the greatest lesson of all: never lose hope.  He is always a fun, rowdy little boy, despite his condition.  Even though he is only four years old, he has been a big inspiration in my life.  When times get hard and even when he is in pain, he pushes through and never gives up hope.  He shows us all that with hope, we can get though anything.

Typical teenager?  I think not.

Hey Sweet Momma! Why A Butterfly?

A couple of people have asked me about the design that I chose for my blog.  The design seemingly has nothing to do with the name of my blog. 

Sugar Kids =  Butterfly?  Wha??

Well, I figured it was time to explain.

The reason I chose a butterfly is because of the symbolic meaning that goes along with butterflies.

Butterflies symbolize change.  But more than that they are the symbol of perseverance because of the change that they over-come.  Their bodies start out as one thing... and then, through a process that is both stressfull and complex, they change.  And they emerge from the change strong and beautiful.

Sound familiar?  Our D Kids are the bravest, strongest examples of perseverance that I have ever witnessed.  In spite of everything they go through, they face life with innocent joy… always managing to find beauty in their worlds.

 

In addition to that, my design shows a butterfly rising from the swirls and circles that is life.  That is the way I see my Sugar Kids.  I see them rising above whatever life throws at them and soaring with wings outstretched.

That’s it.  It’s actually really simple.  =)

Re-Post: Getting It Out

I was exploring my old blog the other day, and came across a few posts that I felt particularly sentimental over.  I figured I would re-post them over the next week so I could have them on my new blog, and so that I could share them with those of you that were not following me back then.  =)

This post was originally written and posted on 7/16/10.

I know there are different stages of grief. I have never looked them up, or studied them, and truthfully, I couldn’t tell you for sure what they are or what order they come in. I am not totally sure I want to know. I know that I have gone through some of them, I know I have revisited them at times, and I know that I will continue to do so. I also know that I have times when I ignore the grief all together. When I just pretend that it’s not there and I am fine. I think that’s where I am right now. I think that’s why I have not been able to blog. Because if I sit down and start to type it out – it’s all just going to let loose. And then what? Yep…. Then I have to face it.

Well, I think today is the day. It’s time to face the music.

Some days I still can’t grasp that this is our life now. Some days it almost feels temporary. And at the end of those days, when I let my mind drift forward to the days, weeks, years to come and I let the little niggling thought enter that it’s NOT temporary – I feel myself start to shut down. I feel the hurt in the place where my heart is and my cheeks start to tingle and I throw up a little in my mouth. Because this is it. It’s not going to change.

Most days we just live one day at a time. Sometimes it’s one hour at a time. Or in the cases of low blood sugar we literally live from 15 minutes to 15 minutes.

It amazes me sometimes how Diabetes has managed to penetrate into all the little nooks and corners of our lives. There is almost nothing that it does not affect in some way. I can’t go to the grocery store with the kids without thinking about how hot it will be in the car and whether the heat will get to the insulin and kill it before I can get the car cooled down. We can’t plan to go out to dinner without first picturing the menu’s of the different restaurants in our heads and wondering which would be best, and easiest to figure out the carbs when we are there. I can’t take the kids to the pool without worrying what the exercise will do to Sugar Boy's blood sugar while he is in the water and what it will take to keep him stable so that he can have the best time possible... and so that he does not go low while in the water, which could be disastrous. We can't go to bed without setting our alarm clocks for at least once, maybe twice, sometimes three times during the night when we get up to check and make sure that he is still ok... that he doesn’t need sugar to bring him up from a low or more insulin to bring him down from a high. We can't wake up in the morning without listening at his baby monitor to make sure that we can hear his steady sleep-filled breaths coming over the monitor. We can’t EVER leave the house with Sugar Boy and not have his “sugar box” with us which contains his blood glucose testing kit, glucagon, sugar tablets, juice boxes, spare syringes and alcohol wipes… all the things that we may need in order to help keep him alive while we are away from home.

That’s why I was totally surprised when this week we discovered something that we could do as a family that Diabetes had absolutely NO influence on….We got a cat! It was SO wonderful to feel so completely NORMAL! That’s something that families do all the time… get a pet, bring it home…. deal with all the things that come with a kitten – It was WONDERFUL, because Diabetes had no place there.

Of course, unless you are going to get a cat (or dog) every day and soon have them over-run your house it was a temporary reprieve. But still very special… and definitely a moment I can look back on and savor! But now I am starting to feel the same numbness set in.. the same sadness…

I know a lot of it has to do with the kids starting school in less than a month. I am hoping I will feel better after we talk to the teacher and the nurse… but here again – something we can’t do NORMALLY! I am having such a hard time being excited about this new adventure because darn Diabetes has overshadowed it with fear. I am so afraid of handing over my son to strangers and trusting them to keep him alive for the 4 hours he is there 4 days a week. How do you do that? How do you EVER feel comfortable doing that? I know we can prepare – I know we can have meetings and write 504 plans and pack supplies…. But it just doesn’t feel like enough.

Will it…. ANY OF THIS…. EVER feel right? Normal? OK?

What's in a Cure?

Definition of 'Cure' – as supplied by Merriam-Webster Dictionary

1. Recovery or relief from a disease

2. Something (as a drug or treatment) that cures a disease

3. A course or period of treatment 

4. A complete or permanent solution or remedy

5. A process or method of curing

Well, that’s pretty broad, now isn’t it?

Since Merriam-Webster was not much help, here is my definition of a cure: 

To push the re-set button.  To go back to the way it was before diagnosis.  To not ever have to think EVER again about the disease.  To not have to worry ever again about a rising or falling blood sugar.  To never have to poke another finger or inject insulin.  To never count another carb or weigh his food.  To have a completely disease-free son… perfectly healthy.

So, if that is my definition of cure…. Is it realistic to expect that it will happen?  Let’s be honest here folks… I mean, really lay it all out and use our heads.  No.  It probably won’t.  Because we are well-educated in this disease and because we understand the mechanism of how this disease works we know that it is not likely that we will see the above-defined CURE for our children.  Now, don’t get me wrong – if it were to happen, I would be partying right along with everyone else and gladly eating my words.  Hell, I would GIVE ANYTHING to see it happen. 

What I do think will eventually happen is some sort of preventative measure will be put into place.  So that future generations of children will not have to go through what our babies do.  How fantastic would that be?  How amazing that Sugar Boy and Sweet Girl may not have to worry about their own children or grandchildren going through and living with the daily burdens of the disease like Sugar Boy does now.

So, if I can’t have MY kind of cure, let’s go back and look again at what Merriam-Webster said, because I’m pretty sure that I just might be willing to settle for something different.

Recovery or relief from a disease.  Lets break that down even further: RELIEF FROM A DISEASE.  What does that mean?  Well, we all know what relief feels like.  Relief happens when the stress is removed.  Whether the stress be mental or physical.  What would ease the stress of Type 1 Diabetes?  Less finger sticks?  Less highs?  Less lows?  Being able to sleep through the night without worry of the unthinkable? Being able to eat anything and everything and not worry about what it will do to your blood sugar?  I think so.

Something (as a drug or treatment) that cures a disease.  Hmmm.  This kind of goes with the next one…

A course or period of treatment.  Hmmm, again.  If you were to follow this definition you could say that insulin is a cure.  Easy now!  I didn’t say that!!!!  I said, if you follow this definition you could say that insulin is a cure.  I gave you MY definition above so put away the pitchforks and torches for a few minutes until I get through the rest of this, ok?

What would WE accept as a “cure” if we can’t have what I wrote above?  Jeffrey Brewer, President and CEO of JDRF suggested, “Maybe a cure is taking two pills a day: one pill stems the autoimmune attack and the other pill regenerates beta cells. If that meant insulin independence and freedom from complications, that’d be pretty good, right?”  I would take that!  I would even utter the word “cure” for that. 

I find it ironic that 88 years after the discovery of insulin we are willing to consider that freedom from insulin would be a cure.  When 88 years prior a mother held her baby and thanked God for insulin… because it was their cure.  It was the substance that saved her child from immediate and CERTAIN death by diabetes.  And THAT was her definition of CURE.  It was the discovery that came just in the nick of time… because another few months, weeks, DAYS.... that child would have been dead.

In the end I think I agree most with what Mr. Brewer had to say when he said this:

“At some point, we’re going to have a new problem of people arguing whether or not we have reached the cure. I look forward to the day when we are arguing about whether we’ve reached the cure.”

Re-Post: Happy Face

I was exploring my old blog the other day, and came across a few posts that I felt particularly sentimental over.  I figured I would re-post them over the next week so I could have them on my new blog, and so that I could share them with those of you that were not following me back then.  =)

This post was originally written and posted on 4/7/10.

Its amazing to me how as women, wives, mothers – mothers of children with special needs – we often feel obligated to put on the “happy face”. We feel like as long as we appear strong, secure, and infallible…. We will be! I often find myself carefully crafting my image – and the image of my family – so that we appear to others as if we have it “all together” ALL OF THE TIME! Why do we do that? It takes so much effort to pull it off sometimes. Why can’t I just say, “You know what? Today – I didn't get it all done.”

I know that the people I surround myself with love me. I know without much doubt that if I were to make that statement – if I were to show up and admit that everything is not “just so” that they would say, “It’s ok.” And that would be the end of it. So, why can’t I do it?

What’s wrong with me?

Now, I don’t want this to sound like I am a fake. I don’t think that I am. The image-crafting is generally not done for the sake of others… at least not completely. It’s done for my sake as well. It’s because I have this picture in my mind of what I want to be, and how I want to be, and how I want my family to be – and I try and get as close to that as possible…. Even if I can only pull it off for a few hours.

Part of it – the biggest part of it, I would say – is the need to feel and appear strong. I AM TOUGH! I am tougher than the financial hardship we may be enduring, I am tougher than the pain that my weight gain has caused, I am tougher than DIABETES. And to prove it – no one is allowed to see when those things bring me down. No one. Not even myself.

At least that’s the way it WAS

.
The very first D blog I ever read was a Letter to Type 1 Diabetes.
I read this letter, and for the FIRST TIME, over a year after diagnosis, sitting right at my desk at work – I cried. I cried hard. Tears drenched my face. It felt SO GOOD. Here was a letter that showed grief for the thing that was wrecking my son… but it showed strength too. And I realized that that letter expressed EXACTLY how I felt – but I had been unable, or unwilling, to express those feelings.

Since then, I have read many, many blog posts about how many ways Diabetes can go wrong – and how we feel about it when it does. Those posts heal me… EACH and EVERY time!
I still put on the happy face. I still try and appear as if I have it all together. And you know what? For the MOST PART I do… I would say I do NOW more than ever… because I have my outlet now. I have a way to get it out when I am angry, sad, or just plain defeated