For those of you interest in the type 1 community posts I write, I urge you to follow my new blog, "Footsteps of Hope". www.footstepsofhope.blogspot.com

I've decided to branch off to a special blog for my thoughts and journey through the life of diabetes and hope to continue to add content to both blogs.  For a preview of what my new blog is like, here is the first post:
Footsteps of Hope

There’s been something I’ve wanted to write about for a while now…as the journey goes on, the learning never stops, the morphing into whatever I need to be at the time, that time just keeps ticking away…without a cure.
My daughter has had Type 1 Diabetes now for 13 years.  The “they should have it figured out in ten years” milestone has come and gone…then the “who told you that?” phase was short, moving into, finally, acceptance.   I sit and let the word resonate on my palate like a fine wine.  Then I cry.  For a moment, it seems that hope is lost.  Hope, is gone.
No cure, no end in sight, night after night of praying and tending to the ghost of what might happen if I let my guard down.  More number crunching, more juice boxes bought for the “lifesaving shelf” (I should have bought stock in Juicy Juice!) , more number crunching, an eye on what the next best thing will be to make her life just that little bit more “normal”.  My emphasis switches from relying on hope to relying on the practical items that will get her through the day, make her life better, the practical of Living with Diabetes.  I hate it.  Is this what it is going to be?  Hearing day after day about another child passing away, another struggling with diagnosis and asking, “why?” … The day in and day out of working to make a difference…until, when, exactly?  Bitterness, exhaustion…defeat.
But then…wait…what is that???  If I listen closely enough, I can hear the pitter patter of little feet in the back of my mind…as the steps grow louder and bolder, I recognize this old friend that has helped me time and time again…HOPE.  Oh…I have missed you…HOPE…HOPE!  Hope for a Cure, Hope for a better life, HOPE!
If there is one thing I’ve learned through this journey, it is that without my side-kick, Hope, I am truly lost.  And I will HOPE.
A short story to share the Footsteps of Hope:  We were fortunate enough to be able to include a glucose monitor in our toolbox of “the next best thing to make life better, a little more “normal”…if sticking another device into your child is acceptable to you as “normal” in this life we call diabetes! We received our Dexcom on a Wednesday and decided to wait until Saturday to start so that we could both watch the video and learn together, and, not rush the process.  We were both a little concerned about the “plunger” – manual insertion – as the Minimed had a spring loaded device and that had hurt terribly.  Caitie decided to ice the spot while we watched the video of how to insert the sensor.  (2 minutes,tops!)  I helped with the first one and, being the first time, it was awkward and we didn’t hear the two clicks right away…but got it done.  Caitie said it did not hurt at all! Caitie went to a friend’s house to hang out that evening while we were out with friends.  We picked her up and got home around midnight.  We looked at the CGM and it said 130 with an arrow down.  We tested and the meter said 141.  We discussed a snack, or, were we at the “bottom of the arrow” since her BG was 141.  Caitie said she didn’t feel like she was dropping.  I stayed up another ½ hour to check her again, to see where she was.  At that time the CGM said 140-something (I can’t remember right now!) and so I went to bed and she was asleep. At 4am I heard an alarm and went in to check on her.  I don’t think I heard the alarm the first time, and, Caitie was sleeping right through it all.  I cleared the alarm and got her test kit.  The CGM said 48!I tested and she was 52.  I grabbed two juice boxes and got her to drink them (still sleeping).  I waited 15 minutes and tested her again…51… got another juice box and had her drink that one … she finally started to rouse and was drowsy.  She gave me that teenage look like, “Why are you sticking that straw in my face?!”  Another 15 minutes or so she tested at 78.  I waited a little while longer and she finally was in a safe range.  I think that the CGM saved her life that night.  The very first night of wearing it.  If it wasn’t that, I certainly believe it saved her from having a seizure.  I got goosebumps.  As a parent, I was breathless.  This CGM is a step in the Hope that I have for a Cure…it is a step in the right direction…that there are people out there working to save my daughter. I have been asked, recently, what I wish for my daughter…without hesitation but with tears immediate to my eyes, I whisper, “A Cure”.  I clear my throat, allowing my voice to strengthen, and I again say, to anyone who asks that question, “A Cure.”  Hope brings me closer to that Cure, Hope lifts me out of bed in the morning, through the challenges of each and every day, and Hope is there when I drift off to sleep.  Hope is what I share with my daughter.  How different life would be for all of us if … … …
And, so, I say, Hi, Hope.  Thank you for being beside me until that day comes.  Please don’t ever leave again.

What is Your Gift?

Recently, at work, I was asked to take part in an exercise to determine my "Behavioral Style".  We've got a consultant who is working with our organization and she came to interview me and have me take this test.  I was fascinated.  I guess that says something about my "Behavioral Style" right there!!  I was eager to see what the "test" revealed and yes, somewhat apprehensive...what would this say about me?  Would I like what it said??!

I immediately went back to a moment in time that I learned something about myself that I thought was not good.  I was working for a major NBA franchise and the President of the company held our Christmas party at his home.  It was meant to be a wonderful, warm, engaging affair with a potluck theme brought into this beautiful, stylish, expensive home.  It was something out of a storybook...people milling about, someone sat down at the piano and started to play...others really did gather around and start to sing carols.  It was something to behold!  I am not a singer.  Did you see the period at the end of that sentence?!  I am NOT a singer.  So, I found myself with a bit of fear in my belly...slowly I backed away from the merriment...please don't let anyone see me and scoop through my arm to drag me back in...please don't make me mouth the words because if I sing just one note, that party is going to be over, baby!!  Backing away, I found myself by the buffet...but, I was not hungry anymore, at all, stuffed.  So I meandered my way into the kitchen and weaved my way through the few that had found comfort in quiet conversation.  I looked around and saw the piles and piles of dishes that covered the beautiful granite countertops.  I, without really even thinking anything more but "sheesh, somebody's going to have to clean up this mess...and it shouldn't be the Prez or his wife..." picked up a washcloth, started some water and started to wash the dishes.  I was happy.  Content even, in finding my place and doing something constructive to help the evening go well.  Then the President of the franchise, of the home, came over to me (we share the same home state and were transplants at the time, so I felt a nice bond with him and trusted his judgement) and said, "Sue!  You really are a type A, aren't you?  Stop that, you don't need to do that!"  Seriously, I am laughing right now, because that was the first time I had heard that phrase, "Type A" and I didn't know what it meant!  Did he just give me a compliment or ... well, it didn't feel quite like that...he was telling me to stop.  Ugh.  What do I do?

Well, on the drive home I asked my boyfriend what "type A" meant.  He gave me some vague answer of it meaning "being uptight" and I got irritated, "I am NOT uptight!"  So when we got home, I looked it up.  "Driven, work oriented, competitive, multi-tasker, over-achiever"...okay...I can live with that!  What's wrong with that?!"

For years, my life went on and I kept that in the back of my mind and tried, sometimes really hard, to be "FUN".  Tried to be laid-back...married someone who's name was always mentioned in the same sentence as "laid back"!  I worked hard, still, and things still got to me, but, I tried not to show it...Type A seemed UN-fun, unlikeable, not someone I'D want to hang around with!!  And life went on.

About ten years later, hundreds of miles away from where that singing was drifting into the kitchen while I washed (yes, I kept washing the dishes!), we had a beautiful baby girl, and then another.  I had found myself a niche in being the supporting role to a successful professional and I took my job very seriously, I found strength in doing it right, and I worried at night that I had forgotten something.  This was a constant.  I worried about my family, whether I was doing right by my daughters, whether I was making the right choices for them from breakfast until reading books before bed.  Then,

Diabetes Happened.

I found myself in a sea of unknowns.  I had to learn, and learn quickly.  I had to make decisions.  I had to make sure they were the right decisions.  There were complications.  More decisions, more acting quickly.  In the end, I went before the board of the hospital to express my gratitude for the care her doctor had given but scolded and reprimanded them for not having the most up to date equipment to treat my daughter.  That complication nearly cost her her life and it was inexcusable.  Strength in the details...

As life has presented itself, I've had to manage a household, manage a disease...if you do not manage this disease meticulously, there are consequences.  Add to that the consequences to be paid would be by my daughter, with her health, and I was driven to details, multi-tasking, ...you get the picture.  My picture was, and sometimes still is by those that care to share their opinion, I am not always "FUN".  My kids come just short of calling me a "FUN-SUCKER" which, in our house, is The Worst!  (I think they may say it in their minds, though, I really do...)

So, present day, I sit down to take this, what did I call it?  (scrolling up now) "Behavioral Style" test.  Uh-oh.  The four descriptors are Dominance, Influence, Steadiness and Conscientiousness.  And, after all is said and done, I come out a "C", description:  Motivated to achieve high personal standards".  There's more, but, that's me in a nutshell.  I look at it again, and, again, I think to myself, "okay, I can live with that."  Then we start to go through things and it is clear to me that the "I's" are the FUN ones.  And that story comes up in my mind.  I want to be a fun one.  I SHOULD be a fun one.

As the interview goes on the consultant is amazing...she is describing how not a single one of the D's, I's, S's or C's can really function or survive without the support of the other three.  Each brings their gift to the table (or organization, or life, for that matter) and once we embrace our Gifts, we really can achieve great things.  We can learn to assess and interact with each other based on our strengths.  Realizing the difficulties in style match-ups...someone who is detail oriented and process driven might find the care-free attitude and disorganized desk of an "I" irritating and uncomfortable, but that "I" is getting the job done, just the same!  There is no "right" way, just a "right way" for each of us to embrace.  It is a lesson in acceptance not just of others and their characteristics, but of ourselves and saying, "it's okay, these things are important to me."  Somewhere out there, there is someone who IS saying, "Thank heavens she is focused on the details, we need that!" That consultant shared with me that she is an "I".  She thought it was apparent, but, I wasn't sure until she said it...then I could see it full-on.  She was influential and colorful and engaging, a real joy to talk to.

The exercise gave me a few a-ha moments, especially about that evening long ago and where I have journeyed since then.  Life throws things our way and we innately react to them the best we can.  Diabetes changed our lives.  It has taken me places I never dreamed of going, it has brought me friendships I don't see how I could do without, it has shown me kindness in friends I thought had forgotten me.  LIFE has shown me that surprises are around every corner, and, how we choose to deal with them, how we react to them, that is when our Gifts shine through.  Even if it takes us a while to get there, we all have gifts to share, and those that make us whole within.  What is your gift?  Embrace it and share it.  Others WILL appreciate it.

I always thought I should be an "I" but now, I think I am really on my way to being okay with "me".

Sometimes, you've got to laugh...

There are moments in life that you feel the urge to give that primal scream a try...

I was telling my husband this on the way to the airport yesterday.  It seems our days have been filled lately with lots of "teachable moments", "life lessons", "challenges"...you know, those politically correct words that we parents use when we are working hard to teach our children the big lessons, to value themselves and others, to forgive and forget, or to forgive, but remember and learn, or to manage a disease way bigger than themselves in a way that will give them freedom to choose and excel, we hope...  with a teenager who is about to get her license and a "tween" who is trying hard to navigate the ups and downs (literally) of diabetes through hormones and middle school life, we've got a run on discussion topics these days!!  Thus, my thought of a good ol' primal scream after I dropped my husband off at the airport.   I was thinking this because, well, I got caught last week...

Every once in a while, as I've told you, diabetes gets to me.  Sometimes I have a week where I just have to say, "Diabetes is kickin' my #@! this week!"   Add to that the trials and tribulations of girls in teenage land (did I mention that before?!) and I had my hands full last week!  Diabetes was being a stinker...calls from school were coming in at every test, out of range and in the "Call Mom" zone.  I was managing a fundraiser, too, answering emails, trying to put it all on the calendar and another call came in from school, where, they take exceptionally good care of my daughter and she is more independent than any adult with diabetes would expect.  (I say adult with diabetes because sometimes you run into someone who doesn't know what it is like and they assume that a child can manage testing, calculating doses of the insulin that keeps them alive perfectly, and treat their low or high blood sugar without much more thought than it takes to tie a shoe), but, I digress...

The call came in and I took a deep breath and answered in my pleasant mom voice, "Hello?"  We went through the scenario and I told them I was on my way to school anyway to deliver the fundraiser, so, I'd follow up when I got there.  Then I hung up the phone, shoved it in my pocket, ... , and began my rant, "Ugh!  This day SU#$!! (I don't let my kids use that word, so, I can't either), "Seriously," I went on to my empty house, "Ugh!  Sometimes, my life just SU$#!, you know?!"  grumble, grumble...and then I hear, "Hello?"  "HELLO_OO?!!"  "HELL-O!" emanating from my pocket!

Ye-ahhhh... I stood there, frozen.  "Hello??"  The secretary from the school was shouting from inside my coat... ughhhh...

In that moment, I realized that A.  My life was really not all that bad, and, B.  Embarrassment is a good cure for what might ail you if you are absorbing yourself in self-pity.  :)

I reached in to my pocket and pulled out the secretary I was going to see in a few minutes face to face...and, I played stupid, hoping she had indeed not heard my tantrum.  "Oh, heh, heh, Hiiiiii!  I must have redialed by mistake!  I'm so sorry, see you soon!!"  Chipper Chipper!!

I hung up the phone this time, checking it once and twice again, and headed out.  I backed down my driveway considering the conversation that may be going on in the office, and, then, I just had to shake my head and laugh~out loud.  "Sue, Sue, Sue"  I felt so silly.  I was a little inconvenienced and I threw a tantrum.  My daughter is LIVING the disease and she handles it with grace and a shrug every now and then.  Shame on me...and, serves me right for getting caught in my childish rant.  And, thank heavens I laughed about it because that was the greatest stress reliever of all!  I walked into school composed and smiling, we never spoke of the phone conversation, so, I really don't know if she heard me or not, but, I am choosing to believe she did, because, when I think of someone actually hearing me complain about my life, I am embarrassed.  I actually love my life, with all of its ups and downs, the "challenges" and the "teachable moments".  My kids amaze me with their grace and intuition.  My husband listens to me when I need to vent about the day's events...my family is whole and knows we can lean on each other.  And...

yes, they can make fun of me, and we can laugh together, because, after all, laughter IS the best medicine.

Being a Mom...of a child with Diabetes

Being a mom is one of the most rewarding, sweet, wonderful things a woman can be.  We all know the trials and tribulations that accompany those rewards...the worry, the planning, the ups, the downs...but in the end, even in the day to day, there is a peace that you have when you look at your son or daughter.  There is a love that knows no boundaries and is never measurable.

Being a mom of a child with Diabetes is all those things, to be sure.  But one must endure a new level of worry that sometimes seems all-consuming.  There is the day to day worry, watching the blood sugar and tweaking life's most un-thought about details...how MUCH bread should she eat?  Is the perfect correction from yesterday going to work today?  Will my child survive this thing called Diabetes?  And when I say "survive", I mean truly that.  It takes my breath away...

The most innocent, well-intentioned action or comment can bring about an ache in your chest that just burns.  I had one of those yesterday.  The school nurse called to talk about our move into middle school next year.  Of course I've been thinking about it...the school has been bringing it up for two years now, "when she gets to middle school..." fill in the blank...  I know that they are doing their best to prepare ME as well, thinking they need to 'cut the cord', so to speak.  It amazes me that no one seems to grasp the idea that all that I am doing now is in order to have my daughter thrive independently from me.  But she is 11 years old.  She can count carbohydrates better than any average adult.  She can estimate, plan, initiate and execute her diabetes management more expertly that many adults.  But she is 11 years old.  Middle school is a scary thought to her.  She is still a child...one who would rather play than do homework, one that would rather have ice cream than a sensible dinner.  Yes, she knows better than any 11 year old that she needs the sensible dinner, but she's a kid, and, if she can fanagle that ice cream with a smile and a hug, you bet she's going to go for it!!

I commend the nurse and the school for being forward thinking, for being proactive.  I salute them for this as it is what I have always wished for our school system.  I agree with everything that is going on.

But it still breaks my heart.

While other moms are worried about what teachers their children will get when entering the "new school", while they're discussing what kind of social atmosphere the blending of four schools will bring, while they're worried for their children's social standing and will there be more homework, I cry inside as I think about whether my daughter will survive the first two weeks of wild swings in blood sugar, whether there will be someone who cares enough to learn what diabetes really does to her body, whether she will survive this damn disease and all that comes with it.  Every dance, every activity, every test, every day, there is a life or death thing to worry about.  Literally.

I don't do this every day...honestly, most days go by and I thank God when I kiss her "good morning" and she complains about having to get up so early, and I thank God when I kiss her "good night" that He's kept her safe for another day...and I even sleep through the night occassionally, not worrying about all the rest of it.  But every now and then, it gets me.  This damn disease has taken her innocence far too soon and my heart breaks for this child who is expected to be as responsible as a doctor on his best day.

So guess what?  Today, I am on a field trip with her to the middle school.  We're watching the band play and discussing what instrument might be in her future as a sixth grader.  She had said once she wanted to take up the drums...that is my girl...full throttle on life...biggest bang for your buck.  When I have days like these, I take a look at her and follow her lead.  If she holds my hand as we walk in, I'll be there...if she doesn't, I'll smile and know that she's ready to walk in alone...but I will always be beside her if she needs me.

Two for One…

I had every intention of writing every day. It is a goal, still. However, there may be a moment from time to time where you will get a "two'fer". These will be days where something went awry in my grand scheme of things and I'll relay the delay to you if possible! More often than not, it will come under the category of "the only sure thing about diabetes is that there is no sure thing". This was the case the night before last…

My ten year old lives with diabetes raging an ever present battle in her body. Since she was diagnosed at seven months old, diabetes is our family disease. We need to monitor her blood sugar 24/7, watch for signs of high blood sugar, low blood sugar, illness, etc. My daughter handles this with the grace of a Queen. We, her parents, probably could take a lesson or two! Most of the time we go along the road and stop to take care of things as they happen with little pause or reaction. It is what it is, as my dad says. I adhere to this philosophy whenever possible, and, when I need to, I move on to "He only gives us what we can handle…" Well, the other night was one of those nights where I looked up and wondered, "Really?!" Now, able to look back, I'm finding the humor and yes, really, I could handle it. That was nothin'. Now, I'm not trying to say I need MORE, just, I guess I'm thanking Him for giving me the opportunity to see that we're still dealing with everything, well…okay.

So, here's what happened:

It was a typical night in our house. After a day of swimming, running to and fro and to and fro in what seemed every direction with the kids and their activities, things were starting to quiet down. I grabbed the bag of chips off the top of the frig (where I keep them to make it harder for me to grab them) and sat down to guiltily munch – I know you are NOT supposed to "munch" after 8pm if you are going to ever lose those last ten pounds—but, every now and then, the chips win! Anyway, I sit down, put my feet up and take a breath. About two minutes later, I realize it is really bedtime for the kids and shuffle them off—my teenager, who is in the habit of using this time to discuss what is on her mind, starts to tell me she has been forced into babysitting the next day (by me) and that she doesn't want to. Yes, teenager, I know you do not want to do anything but hang out with your friends and have an ever flowing river from my wallet for movies and McDonalds, but, teenager, I am trying to teach you a valuable lesson and I am going to keep trying…we "discuss" the situation further to the inevitable end of her going into her room to sulk and me moving on to my ten year old, who grabs the growling dog and takes him to bed to "cuddle".

We check her blood sugar, like we do every night, to make sure she is going to bed in a safe range for the night. To my dismay, her meter signals her blood sugar is high and I begin my "oh, darn, it's one of those night's" routine. (Of course, these are NOT the words I use in my mind!!) The routine begins, "Did you have something to eat that we didn't dose (give you insulin) for?" "Is your pump site okay?" "Are you feeling alright?" As in most nights when this happens, there is no concrete reason why her blood sugar is high. So, we give her the insulin she needs and I tuck her in…my night now begins. When she has a wacky number at bedtime, my routine is to then monitor her until things are right. Which means, every hour, I test her blood sugar and make the necessary adjustments, or change her pump site, while she sleeps. I have vowed to let her be a child, to take care of her, for as long as I can. As the night wears on and I become tired, my love and admiration for her props me up—this body is working so hard to make things right, the least I can do is try to help! I do not use an alarm clock, I keep vigil with my routine as my body has learned to adjust to this life.

To make a long story short, I didn't get a whole lot of sleep the other night, so, I was in a bit of a fog yesterday morning! I tell you this story because I hear from so many people that they didn't realize that diabetes isn't something you "put to bed at night" like the child who has it. There is no cure for this disease, the people and the families that live with it, live with it every minute of every day. It can loom, somedays, as if waiting to strike, as blood sugars go wild and children and adults reel in a fog as they try to stay on top of things and come back into focus. It is worth mentioning, I think, that these children and adults who live with this disease with such grace, are my heroes.

Please be a part of Caitlin’s Cure

Dearest Friends and Family,

As I take a look back in time, I cannot help but mark our journey with Diabetes by the Walks we've taken…the walk to the car with my seven month old baby girl when she was so sick…the walk into the ER that frightful night of diagnosis. It seems so long ago and, yet, just like yesterday as the tears come quickly to my eyes. I remember the walk into Children's Hospital for the first time, over the skywalk, as the doctors and nurses put us on the path to live with this disease, supporting us to help our daughter grow into a beautiful, healthy girl.

I remember our first Walk to Cure, with my mom by my side. She'd scour the internet for clues and information on how to handle our new life. I remember our second, third Walks…all of them. What I remember most is the incredible support of family and friends as we've walked. Faces have changed. Mom walks with us in heaven and I'm sure she smiles as she sees our family endure and grow. The kids have gotten older and now bring their friends along, too. Each year we have been more successful than the last in raising funds to help the research advance to the Cure.

What we are doing IS working! Theories are turning into clinical trials, advancements are being made on many fronts, and, the people who live with this disease every day are being given tools to help them lead better, healthier lives. This is not a dream. The scientists (a fairly cautious lot) are encouraged that we WILL find a Cure for our children SOON!

Caitie is ten now…for the first time really starting to understand what it means to her to have diabetes, and, she doesn't like it. She's taking on many of her cares, brave and strong. It breaks my heart. Every time she has to stop, poke her finger…it seems just a bit of her childhood slips away and she's forced into a world no child should have to handle. Every time her blood sugar goes low, and she cries with frustration and confusion—this disease takes a little from each of us. I look around and see friends and schoolmates who are diagnosed and then have to take on this challenge. All of these children, all of these young adults showing so much courage and conviction while taking on a life they never imagined—this is why we Walk. It is working, lives are improving, but, it is NOT ENOUGH. These kids need their childhood back, the children who will be diagnosed need to be saved from even a day of having to deal with life with diabetes. It isn't fair, it isn't right.

But, we can do something about it!!

Won't you join us in helping to find the Cure for Diabetes? It is easy to help~easy to do something that will make an impact on thousands of people! It is incredibly easy to do something to make Caitie's life one that will someday be free of Diabetes. All you have to do is sign up to Walk with us and support our efforts for "Caitlin's Cure". If you'd like to join us, please follow the link provided and register to Walk to Cure Diabetes at the Milwaukee County Zoo with "Caitlin's Cure" on September 18^th.

If you are unable to Walk with us, you can still be a part of "Caitlin's Cure" by clicking on the link below.

Please consider donating to "Caitlin's Cure" and supporting JDRF's efforts. Nearly 87¢ of every dollar goes directly to funding the research for the Cure. Your money is carefully spent and tremendous results are happening every day. Every day, we are closer to the Cure. Can't you just imagine the Walk we will take when that day comes? I hope you'll join us that day, too!

Thank you, for all that you've done in the past and for all that you continue to do. We are so grateful to you.

Sincerely,
Sue
Caitie's Captain of Hope

The Link to Join our Walk team and Caitie's Fundraising Page is: http://walk.jdrf.org/walker.cfm?id=87702310

Hello World!

Well, I've done it! I have moved into the world of "blogging" and I am hoping that someone finds my musings entertaining, or, even better, useful!

I've been thinking about this for some time...trying to put my love of writing together with my experiences of being a mom to a teenager and a child with diabetes, too. Life is never dull, that's for sure! I'm going to be trying to combine some stories with some great tips and info-let me know what you think! I'll be happy to follow a lead or investigate - education, both on the parenting front and the diabetes front, is close to my heart!

So, my first post...I'm taking my mom's advice and "writing some of this stuff down"! Hope you enjoy the ride as much as I do!