A Little Diddy

A little diddy....bout Jack and Diane......HA! Just kidding......it's about diabetes....what else, right? Short and sweet and to the point....lol


D is for the delightful way you fight me for control every day
I is for Insomnia.....it's not just a sleep habit...it's a way of life
A is for all the highs and lows that I wish I could ignore
B is for bloody test strips that show up all over the floor
E is for the enigmatic personality which you posess
T is for triple shot espresso which I now require to function like the rest
E is for Emma....my heart...my soul...who will win the battle against you
S is for my sanity which you have stolen...but it's ok...I still know what to do.

Grease is SO not the word!

Who would have thought that my child would take a liking to the movie "Grease"? Who would have thought that she would become obsessed with it? Who would have thought that on the first full day of summer vacation, she would want to have a movie marathon of it? We're talking 5 times watching...back to back to back to...well, you get the idea. At least she took time off to sleep last night I suppose. Anyway, I knew that we would have to make some basal changes with the start of summer vacation...because we always do. Her daily schedule is not the same, we are much more random during the summer...coming and going as we please...eating when we are hungry...getting up and ready for the day whenever we feel like it. I enjoy the summer months with her. I like the freedom and the fun. I do not like the feeling of starting from scratch with her basals and ratios though!
Anyway, back to the movie obsession. Emma was not very active at all today because she spent most of the day watching Danny Zucko and Sandy Olson sing and dance all over Rydell High. I was ok with it, because I was tired....we had a camp out in the living room last night and my 35 year old back is not a fan of sleeping on the floor. Plus I figured...it's her first full day off...let her do what she wants...she's worked hard all year and done extremely well in 2nd grade. Well, diabetes apparently is not a fan of "Grease"! Emma's blood sugars were high all day long....really high...like stupid high. I rocked the temp basal, I rage bolused, I forced her to drink enough water to fill a lake...and still...highs. It got to the point that I was hearing her sing along to "Summer Lovin" and I began to sing along in my head with different lyrics to showcase my frustration, "Tell me more! Tell me more! Is this insulin or water I'm bolusin?" and "Tell me more! Tell me more! Do I need to change her site?" Ridiculousness at it's finest.
So, tomorrow I have decided to limit the grease lightning to one viewing. Tomorrow we shall swim...we shall play in the great outdoors...we shall be active little buggers and hopefully diabetes will like me better for it.
Oh those summmmmer nights....have so far been a real pain in the bum.

4 years

So here it is....I feel like I have been dreading this day, thinking about this day, anticipating the awfulness of this day for the past year. Emma's 4 yr anniversary of her diagnosis is tomorrow...just a few short hours away. 4 years.....when I say it out loud it makes my heart hurt. When I read it on the screen...my eyes begin to fill with tears. I look at my girl now and I try to remember how she was 4 years ago and it seems like a distant memory to me....a completely different girl...and completely different life. I look at my own face in the mirror and I know that I am different. I come across pictures of myself from years ago and I hardly recognize me. I am not that girl anymore. That girl was lost forever when the doctor walked into that dismal room in the hospital and uttered the words, "Emma has type 1 diabetes." That version of myself died that day. She wilted away into a puddle on the floor and sighed her last breath into the world around her. The Amy you all know and hopefully like...if not love...emerged from that puddle of naive innocence. I look back over the years and I still mourn the loss of the old me. I wonder what her life would have been like if the doctor had simply walked into the room and told her it was a freak bladder infection and had written me a prescription for an antibiotic. I wonder if she would have gone along about her merry way and I wonder where she would be today...if she would be happy.
I stand here today and look behind me at all of the years past...all of the experiences that diabetes has brought us...all of the lessons learned...the failures...the victories...the bonds...the love. I look back and I am proud. I'm proud of that tiny shred of confidence I have in my back pocket now. I'm proud of the Mom I am today. I'm proud of the D-Mom I have become. Most of all I am proud of Emma. I'm sure you all know from reading my blog just how special I think she is. I am honoured to be her Mom. She is my heart. She teaches me more every single day than I could ever hope to teach her. I am proud of her strength, her bravery, her beauty, tenacity, humour, and stubborness. I am proud of her.
And yet I still mourn the loss of that 4 year old little girl she used to be. My heart is heavy when I think about who she would have become as a person had diabetes not been in the cards.
She is 8 now. Tomorrow will signify 4 years of living with diabetes....half of her life. She has lived half of her life with diabetes. The day after tomorrow will tip the scales the other way....she will begin accumulating more days with this disease than without. That thought has been running through my head for days...weeks...months. Typing it out hurts. I can imagine the pain that I would feel if I attempted to say it out loud. I don't want the scales to tip in the other direction. I don't want her to have more days with it. I think the enormity of that fact will completely demolish me. I don't know that I will be able to breathe tomorrow...or the next day. I don't know that I will be able to keep it together and hold it all inside...shoving it way down deep like I have trained myself to do over the years....shoving it down to push the sad thoughts...the tears...push them away and hide them from Emma. I don't know that I will have the strength to do that tomorrow. 4 years with this disease is enough. I am so tired. I'm so tired of trying to be positive....trying to be upbeat and focus on the good things that have come to us. I'm tired of the cliches....it will be ok...you will be fine...you can do this...you are strong...you have done this for 4 years...just keep going....you can do it...you have to do it. I hate the fact that I say those things to other people....when i find it so hard to believe them about myself right now in this moment. I hate that i don't feel strong right now. i hate that i can't stop crying adn the keys on the keyboard are all blurry and i hate that i keep blinking back the tears and wiping my nose on my sleeve. I hate that diabetes has stolen more tears from me. I hate that i have that sad lump in my throat and i can't breathe. I just want to breath again. I just want to let out a great big sigh and breathe.
I am sad.
Plain and simple....I'm sad....I'm sad for the shit we have had to endure as a family...I'm sad that there is no way out of this...we just have to make the best of it and keep moving. I'm sad that we have to still wait for a cure. I'm sad.
4 years.....is a long time. 4 years of waking up with my heart pounding and hoping that she lived through the night. 4 years of educating the ignorant masses about type 1 diabetes and feeling like a broken record...yes she can eat anything...yes ANYTHING....no she didn't get this from eating too much sugar...no there was nothing i could do to prevent it...no she will not outgrow it...yes it is awful....yes i know that you think you would never be able to give your baby needles everyday....but as i smile and nod i am shouting inside my own head that you WOULD be able to do it...you WOULD because it is your baby and you would do anything for them..to them...to keep them alive. 4 years of checking blood sugars, giving insulin, counting carbs, calculations, math, ratios, adjusting. 4 years of feeling like i have no control in this. 4 years of fighting for control over this. 4 years of making it my daily mission to show diabetes that I AM THE ONE IN CONTROL of this. 4 years of tears streaming down my baby girl's face from pain....4 years of battling highs and lows and ketones and illnesses. 4 years of joys and pride and victories and a connection formed with my daughter that would never have been there otherwise. 4 years of smiles and laughter and fun.
4 years of living. 4 years of growing. 4 years.
It's a long time...and yet there are days where it feels like the blink of an eye. 4 years of our lives.....
So, if you see me tomorrow and I look a wreck...or I look sad...or you see my eyes are red and puffy...or you see tears falling from the corners as I furiously try to brush them away to hide them from  you...from her...from all. Please understand. Please know that I am just a Mom...trying to make it through a day....a day that I will never forget.

A perfect day

Today was perfect....absolutely perfect. I love when days like that occur.
Emma's 4 year anniversary of being diagnosed with diabetes is in a couple of days, but we decided to celebrate her bravery and how far we have come today instead. We started out bright and early and drove to Toronto to take her to the CN Tower. For those of you who do not live in Canada....the CN Tower is one of the world's tallest free standing structures...so it is quite the experience to go to the top! There is a glass floor section as well, so you can stand there right on it and look WAY down below...very cool...and a little scary too. True to form though, we walked right out on it and took some pics. Here is one of Emma and I laying down on it actually

I may or may not have done a little riverdance routine on there as well as some jumping in place as I sang that old classic by Kriss Kross "Jump! Jump!" Maybe....probably not....ok....yes, yes I did all of that!

As we walked around outside on the observation deck, Emma decided she wanted a snack...so 1,815ft 5inches in the air or not, she checked her blood sugar. I stood there watching her and couldn't help but laugh at how odd our lives our now that diabetes is in it. There we were on top of the world and without paying for an entry ticket, diabetes was still right there with us. One of my main goals for the day was to make it about Emma...make it about her bravery and her strength. I didn't want it to be a sad day focused on diabetes and the fact that she has had to endure more in her short life than many adults will ever have to. I didn't want to focus on diabetes....I wanted it to be in the background...fading away...ignoring us...letting us be happy. Well, seeing my girl check her blood sugar there today....it made me smile...diabetes doesn't stop her from doing anything...and I will spend the rest of my life (or until a cure is found!) making sure that it will never stop her!
After the CN Tower fun, we did some shopping, had dinner, played at the park, and she even got soaking wet at the splashpad there. I couldn't have hoped for a better day. Diabetes was there....we had a couple of high blood sugar numbers...we had to bolus for food...we had to do all of the usual things that we do every single day.....but it was not important today. Today wasn't about diabetes....it was about Emma.
After Emma watched her bedtime movie, I went upstairs to suprise her with one final thing.....there's a carnival in town and I told her we were going to go...in her jammies...to ride the ferris wheel at night and see all of the pretty carnival ride lights. The look on her face was priceless and i will never forget it. As we ran downstairs to get our shoes on, Emma said to me, "You are the best Mommy ever!" It sort of hit me all at once in that moment.....I had to fight back the tears and swallow that lump in my throat. Luckily she was in front of me and well on her way to her shoes, so she didn't see me...she didn't see the tears...she didn't see that look on my face that I'm sure expressed the feeling I was having...like someone had punched me in the gut and knocked the wind right out of my lungs. I gathered myself and said to her in what I hoped was my most excited and happy voice, "thanks sweetie, but YOU are the best! You are the best for what you do every single day!"
I hope she knows. I hope she knows how special she is and how utterly brave she is. I hope she understands that I am amazed by her. I look at her and am in awe all of the time. I look into her eyes and I see the wisdom...and the old soul shining brightly within her. I see it....and I am in awe. I hope she knows that this day meant the world to me too. I hope she knows that I spent most of the day watching her...soaking in her happiness...enjoying her delight...because that is what matters to me most.
So, while I know that the 26th will probably be one of the hardest and most heart wrenching days of my life as it will signify half of her life lived with this disease......I will take comfort in this day...today....and know that it was perfectly perfect....and I am greatful. This smile says it all!

For all my newly diagnosed friends

One day you will find yourself standing at the kitchen sink doing the dishes...and you will realize that you are doing it...you are living this life. Every little nuance...every little detail...it has become second nature to you. The needles, the lows, the carbs....it is just there....part of your life. It's not in the forefront of your mind as much as it was when you were first accosted by this disease. It's not consuming every single thought in your poor tired brain. It is still just as present...and just as THERE...but it's somehow not as prominent...not as heart wrenchingly painful. You are making it work and you have gotten so caught up in the day to day routine, that you have somehow let the last 4 years slip past you like a thief in the night.
I don't know if it's because of the old saying about time healing all wounds. I don't know if it's because of the fact that it is really human nature to find comfort in the routine. I don't know if it's because through the repetitive actions and experiences this life throws at us....we somehow gain confidence. Or maybe we just become jaded to it all. We have seen so many horrible things because of this disease. We have endured such incredible stress and pain because of this disease. So, maybe all of the experiences rolled into one have caused us to build up this shield of protection around us that will save us from the pain. I don't really know.
I don't know what it feels like to be diabetic. I don't know what it feels like to be a Mommy to a kid with a functioning pancreas. It's part of our lives....just a part of who we are...and we have learned how to make it work. So, if you are new to this life and feeling like you will never get there...like the day will never come where your every thought is consumed by this disease. Please read this and know that it will happen....that day will come...I promise you. I have stood where you are standing. I have seen the world through your eyes. I have felt what it feels like to have all of those thoughts crashing around in my head too. I have laid awake at night with tears rolling down my cheeks and landing on my pillow. I have (and still do) held my breath as I open the door to my daughter's room in the morning as I say a silent prayer in my head that she is still alive. I've been where you are. I know your days and I know your nights. I know your life...and I know you.
That day will come...I promise you. Just keep doing what your doing. Keep going. Keep checking. Keep talking. Keep learning. Keep breathing. Keep living. That day will come when you least expect it...I promise.

My D-Mom goggles

I was sitting here thinking about the fact that as a Mom of a type 1 diabetic child, I sort of see things differently. I mean I have known for most of my life that I do not belong in the group of people that one would classify as being normal. However, since I began my career as a Mom of a type 1 diabetic child....I think that odd-ness has sort of been magnified. I feel like I sometimes see things differently out there in the big bad world. It's like I walk around wearing these D-Mom goggles...so to speak. I see things in a whole new way because of diabetes. From simple things like walking down the aisle at the grocery store and seeing the food on the shelves in a completely different way......to going on a school field trip with Emma and noticing a particular classmate that looks just a little too pale...and little too lethargic in the summer heat. I see things through my D-Mom colored goggles now. I see the food on the shelves at the store and I see carbs...I see numbers...fibre...fast acting sugars, protein, fat.....I see how this food is going to be digested in her body. I see how much insulin she will need before eating it. I see this food as fuel instead of simply something to eat for pleasure or nourishment. I see it as the fuel her body needs to function properly and in a healthy manner. I see the classmates at the park and my D-Mom goggles zero in on their eyes....searching for the familiar signs of high blood sugars or low blood sugars. I find myself unable to focus on anything else around me because I can't shake that feeling in my gut when I see the pale complexion on their face.
My D-Mom goggles are always on....day and night...I never remove them. They have become a part of me now and like it or not, I have to accept it. So, diabetes has in fact changed me to a certain extent. It has possibly magnified my oddness...or my quirkiness....it has left me with a feeling inside that I must wear these goggles with pride and bravery. I put them on years ago originally for my daughter....and now I wear them for countless others. I wear them because they are mine and I make them look good.

D-friends that just get it

So last night at bedtime, Emma said to me with a deep sigh, "Mommy, I hate how sometimes people just don't get it. They act like my diabetes is brand new....and it makes me feel weird." I felt another boulder of diabetes related apathy and despair added to the already existing pile of rubble on my heart. I think that we are kind of moving into a new stage with this disease. Emma is now 8 years old and fast approaching her 4th year of living with this. We are by no means experts....in fact I don't think there is such a thing as being a "diabetes expert". In my opinion, even the most educated and experienced endocrinologist should not be able to consider themselves a "diabetes expert" because there are just too many variables, too much going on, too many scenarios, too much guessing.....diabetes is NOT an exact science. In any case, we are a lot more informed and educated than we were 4 years ago.....I know that much.
So begins our newest stage in this life I think. The emotional aspect of it all. She wants independence and I want to give it to her even though it is killing me every step of the way. She wants to feel like people care, like people are on her side and are willing to stand up for her and help. She wants to feel like she can count on people close to her. She is frustrated at times. She is exasperated at the ignorance and broken record responses people give her when they discover she is diabetic. I am not quite sure how to handle this new aspect. As her Mom, I want to make it all better...I want to tell her that it will be ok...life will be full of sunshine and roses and unicorns.......................but I can't, because that would be a lie. I don't want to mislead her by telling her that people will get it eventually, because I have found more often than not, they don't. There are those special people out there...those sparks of light...those that make our days easier. I hope that Emma discovers many of those people in her life.
For example today...we went to the park down the street from our house to meet up with some fellow D-families. As usual she had a blast! There was one particular moment that stuck out for me. Emma was playing with a little girl who actually has an older sister that is Type 1 AND a younger sister that is Type 1. I made Emma pause for a minute to check her blood sugar to make sure all was good. This little girl was standing there patiently waiting...she said to Emma, "Oh you have a cool meter! I know all about this stuff cause of my sisters." I smiled inwardly as I felt that same same feeling take over....and I wondered if Emma was feeling the same thing too. The meter counted down and showed a BG reading of 7.8.....pretty good for a park play date. Once the little girl saw the 7.8, she turned to Emma and said, "OK! You're good! 7.8 is good....let's GO PLAY!"....and off they ran. I couldn't help but laugh. Any other kid on any other day in any other town would not have a clue as to what the three of us were just involved in...checking blood sugars, seeing a good number...and simply knowing that it was a good number. But there we were...a D-Mom, a type 1 kiddo, and a sibling of 2 type 1's. I loved that Emma got to have that moment. I loved that she connected with this little girl and has found things in common with her besides diabetes. I love that this little girl knows this life...she knows it because she lives it...every day...with her two sisters as well as her type 1 grandma. I love that while diabetes is probably a huge part of her life.....and she was at that moment playing with yet another type 1...she still laughed and giggled and danced and played with Emma...they talked about Mumford and Sons (one of their favorite bands), they gave each other piggy backs, they flew kites, they did everything that little girls are supposed to do while playing together at the park.
Before Emma and I left this afternoon, the two girls hugged and said goodbye. It made my heart melt. I hope this little girl knows how special she is. I am greatful that diabetes has brought her and her family into my families life....but I am even more greatful that she is able to be a friend to Emma on a completely different level than someone who doesn't really get this life. It was pretty amazing to me to stand there and watch them and know that this is probably a lifelong friendship in the making.

Saturday night ramblings

I've had a lot on my plate lately....my mental plate, I should clarify. It is nearing the end of the school year here, the 22nd of this month will mark 10 years of marriage for Shawn and I, the 26th of this month will mark Emma's 4 year d-versary, I am still trying to figure out what to do with this overwhelming need and want and desire to have another baby (Shawn is not so keen on the idea), Emma is growing up and becoming more independant...which makes me proud and happy...and yet sad and vacant somehow all at the same time, and I am burnt out....burnt out on diabetes. It's a whole lot all piled up on that plate and some days it seems like no matter what I do...things spill over the edge...staining the proverbial tablecloth that is my sanity.
I sit here late at night, when everyone else is fast asleep...and I am trapped in my own head...all of these thoughts swirling around making me dizzy. It seems like a viscious circle. I'm 35 and most days I feel like I don't have anything figured out...most days I feel like I am no further ahead than I was at 25. Sure I am a teeny bit wiser...a teeny bit stronger...and a teeny bit more brave. But really, what do I have to show for it? What do I have to show for my 35 years on this planet that means something?
Well, I am going to use this post to figure that out.....for myself....and possibly maybe hopefully help someone else who could be dealing with something similar in their own lives.
So, 35 years....................
I have managed to give birth to the most amazing human being I have ever met in my life. She is smart, kind, beautiful, and hilarious. She is without a doubt my greatest accomplishment in life.
I have managed to find and fall in love with and marry my best friend. He may not remember to help with the dishes unless I ask him to first. He may have a sixth sense for choosing the day that I have cleaned the bathroom sink to shave...and leave behind all of those lovely little hairs. He may snore louder than a friggin freight train. He will go out and get me a tea and cough drops when I am sick without a moments hesitation. He will hold the door open for me. He will play the role of Emma's pancreas on days that he doesn't have to work, just so I can sleep in. He tells me I am beautiful even when I don't feel like I am. He will smile at me from across the room...and I will see those dimples...and my heart still skips a beat. He makes me feel safe. He works hard so I can stay home and be Emma's pancreas. He's my best friend and I have managed to make him laugh and smile nearly every day for the past 10 years. That is an amazing accomplishment in my eyes.
I have some of the world's greatest friends. I am a goofball. I like to joke around more than I like to be serious (which is kind of odd, because a lot of my blog posts are serious....maybe this is my special place to get the seriousness out?). I am weird. I am quirky. I don't follow the normal path....I prefer the road less travelled and I am beyond lucky to have my friends at my side.
I like to write. I wrote a book. I wrote 2 books actually....one about our d-life so far...and one full of d-related poetry. That is pretty special, I suppose.
Huh...I guess I have a few things to feel good about. I wonder if this is all just a process....something that will have to be dealt with and sorted out a little at a time. I get scared though...scared that I will wake up one day, 10 years from now and feel like a failure. I wonder if the big D has anything to do with that....my fear of failure. I can't really recall ever having those feelings before. I mean sure, when I was growing up I would get nervous for certain tests in school...feeling like there was no way I could pass. But I am talking about real life fear of failure. That annoying little voice in your head that taunts you.....sometimes causing you to second guess yourself...hesitate...worry. I hate that voice.
Isn't it weird how when you sit down to think about it...reflect upon it....you realize that more often than not...you are your own worst enemy? I find that to be true for myself a lot of the time. Wish I knew how to stop that.

The highway dance

The seemingly choreographed waltz upon the cement highway
underneath the burning summer sky
back and forth
to and fro
fast and slo
we dance along and learn our place
without a single melody
tarnishing our space
The gleaming of the sun
reflecting off the chrome bumpers
will leave you blinded
for a moment of bliss
lost in the chaos
free falling in the dust
trusting your instincts to lead your heart
set you back upon the path
with barely a breath
whispered at your neck
gliding in to continue the dance

A less stingy low blood sugar?

We are rapidly approaching the 4 year mark with this disease and it is causing me to take a look back and reflect lately. I have been proud of her since day 1 for facing this life...this disease head on. She has put her brave face on even when she isn't feeling brave at all. She has come a long way, shown just how stubborn she is and just how much tenacity and perseverance this life takes. She does it...keeps putting one foot in front of the other...just keeps going.
Yesterday we were hanging out during the precious time after school and before supper. Just her and I, acting silly, playing, and being together. I love that time of day. She has this card game that one of her friends gave her for her birthday a couple of years ago. Some of the cards have actions on them (i.e. roll, tip toe, close your eyes) and some of them have locations on them (i.e. sink, microwave, vaccuum). The point of the game is to make it into a treasure hunt and you collect cards along the way until you reach the end where you will discover a little bag of pretend gold coins. So, she was running around the house hiding these cards and giggling like a goof. Once she had hidden them all, she came running into the room to tell me to start hunting treasure. Well, there we were rolling, giggling, cartwheeling all through the house collecting cards...it was quite the sight I'm sure. At the end of the game, she turns to me, breathless, and says, "Mommy, I think I'm low." Quite possibly my least favorite phrase in the entire world. My heart started that old familiar pounding, pulsing, panicking. I checked her...and sure enough the stupid meter showed me a 2.8. After nearly 4 years with this disease, and countless low blood sugars......I have gotten sort of used to those moments in time. I do not and will not ever like those moments....that feeling...trapped in a time warp of diabetes reality.....but I do admit that I am about as "used to" them as one could ever be. However, when that blood sugar number begins with a "2"....I get a little more panicked than I normally would.
Well, to make a long story short....we treated the low and retested to find she came back up to a better number. My whole point of this story though is to share what went on during the low moment. I used to sit there staring at her...waiting for the color to return to her cheeks, for her to finish the juice or food that i had given her, for the low to go away. I would ask her every so often if she was ok...if she still felt low...if she was ok...if she still felt low...if she was ok. Over and over again....all of the times I have asked her is she was ok.....insanity. Well, lately I have been able to hang in there better...instead of hovering and staring at her....asking her over and over again if she's ok....I can usually feel comfortable with continuing on with what I was doing (i.e. making supper) and I am able to ask her if she feels like the low is coming back up. I love that little piece of progress that comes with experience and age. She is now at a point where she is able to be so in tune with her body that she can feel the low...and feel if it is hanging in there...or if it is going back up. She is more in tune with things and that in turn makes my panic not so terrible. I like that progress. I like that feeling of knowing that she is with me in this...she is on my team...she is part of it instead of just being the victim of it.
It may seem weird to some of you reading this, but yesterday was actually the first low blood sugar that began with the number "2"...that I have ever endured without chest pains. It was the first one that I have been as ok with as anyone can possibly be ok with a low blood sugar. Don't get me wrong, I hate them. I hate lows with a red hot firey passion and I will never be complacent with them or treat them as not being a big deal....but I am seeing a small teeny tiny ray of light with them now...i can see the hope and the teamwork and the experience...and it makes it sting a little less right now...and for that I am greatful.

Yogurt Flashbacks and Goldilocks

The alarm goes off at 7:10 every weekday morning. Why 7:10, you may be asking yourself? Why not 7:00...or 7:15? Well, in my mushy, overtired, stressed out D-Momma brain....7am is just too early...and 7:15am is simply too late to ensure that we will make it out the door in time for school. It's sort of like "Goldilocks and the Three Bears" really....and 7:10 is my version of the bowl of porridge that is just right.
Anyhoo, the alarm goes off at 7:10am....and I roll myself out of bed....giving myself a pep talk to get up, get going, get moving, get to checking those blood sugars and getting Emma ready for her day. I should mention that the cell phone (my alarm) is actually in Emma's room...which is next to ours. I also have a baby monitor in there that I now like to refer to as the D-monitor because "baby monitor" is just not accurate anymore....and she's 8....not a baby and not a fan of being referred to as one. So, I have the cell phone in her room because it is the only way I will get up and get ready for the day instead of get up, shut the alarm off, and go back to sleep. This is our morning. This is our life.
Well, the other morning I reached into the refrigerator to grab Emma a yogurt to go with her bagel for breakfast. It's the same thing every morning...the same routine. For some reason as I reached my hand into the fridge and grabbed that yogurt container, I had another one of those D-related flashes of the past. I stood there and recalled the first morning after Emma was diagnosed...her first breakfast. I was unsure...I was nervous...I had never paid attention to nutrition labels on any of our food before...and now it was the only thing on my mind all the time...carbs carbs carbs...insulin units insulin units insulin units...protein..fat...fibre....blood sugar...all the time. That first morning, I grabbed the container of yogurt and stared at it....turning it in my hand over and over. My heart started to race as I realized that I had foolishly thrown away the outer package it came in...that package was where the nutrition info was. I had no idea how many carbs were in yogurt...no idea where to find that info...and for some reason I was oblivious to the fact that I could have just looked it up on the computer. As I stood there the other day, I could feel my heart racing again like it did 4 years ago. I could remember the panic. I remembered the tears falling from my eyes as I stood there with the fridge door open...realizing that our life was never going to be the same...this was just going to be one of many many times that I would feel this way...and there was absolutely nothing I could do to change it. In my mind, I could see that version of myself from the past with her shoulders slumped in defeat, the aura of heartbreak and stress surrounding her, the way that her head was tilted down...staring at that damn container of yogurt like it was the enemy. Food was my enemy then. It was the one thing standing in my way from being able to continue on like I had been for the first 4 years of my daughter's life. I hated that yogurt. I wanted to grasp it in my fist and throw it back into the fridge...not caring if it splattered a big mess everywhere. I hated it. I saw that version of myself and I wanted to hug her...tell her that it would be ok...that she could do this...it was just a yogurt...just one yogurt...of one breakfast...and there would be many more to come. I remembered that moment when I realized that I was standing at a crossroads that morning...I could either admit and accept defeat...tell her that she would have to pick something else to eat that morning because I didn't know the carbs in yogurt...and let diabetes win the very first round of our epic battle. OR....I could set my shoulders back, raise my head up, take a deep breath, accept this new reality as our own, and figure....it....out.
Needless to say, I chose option two....and I'm glad I did. I wound up calling the grocery store, explaining my situation in between sobs to the poor person who happened to be working and answered the phone that morning. She was extremely helpful and had a stock boy go down the yogurt aisle and look at the nutrition info for me..noting the carbs...and relay that back to the phone.
So, as I stood there the other day with my hand grasped around another yogurt container...I realized that I am no longer that woman...no longer that Mom...no longer that Amy. I have come a long way in accepting this life and making it work...thinking outside the box and making it work. It made me wonder what I will be doing in another 4 years that will remind me of something that occurs now. I hope that I will be 39 years old, standing in front of the fridge, grabbing another yogurt....and simply giving it to Emma...and smiling at the fact that we made it....we won the epic battle and diabetes is no more.

What Emma will tell her grandchildren

Last night while Emma was in the bath, she was talking to me about how weird it will be to tell her kids and grandkids that she "used to have diabetes when she was a little girl." For some reason she was highly concerned that once a cure is found, she will have to give back her pump and meter. It was definitely one of those moments that broke my heart and made me smile and giggle on the inside all at the same time. She was looking at me so earnestly and had tears in her eyes because she has become so attached to these devices that she uses on a daily basis....that the thought of having to return them was just too overwhelming for her. I reassured her that we would keep them if she wanted them...even if I have to pay for them myself, we will do that...so she can have them as a souvenir for the rest of her life. How odd to think of these things as potentially being "souvenirs" one day. I mean we go on vacations...to Disney World, the Grand Canyon, or even somewhere exotic or European......and we always pick up souvenirs to bring back with us. We will grab a silly little keychain...or a shot glass...or the ever popular t-shirt that says "I went to *insert location here* and all I got was this silly t-shirt." But to think of an insulin pump and a blood sugar meter as being souvenirs one day? I just can't imagine it at this point. Emma can though...she wants them...she wants to hold on to them forever so she can show them to her children and her grandchildren. She wants to keep them because they will remind her of what she had to endure as a kid. It will be something tangible that she can pull out on rainy days, and recall all of her life's events that she lived with this pump attached to her...1st days of school, gymnastics classes, piano lessons, birthday parties, playdates. It will be like a badge of honor for her I think. She said she wants to sit down in her rocking chair when she is an old lady and pull this little pink insulin pump out of a special drawer and say to her grandchildren, "ya see this here? this is the thing that your Grandma had to wear EVERY single day for many years when she was just a wee girl (apparently Emma will develop a Scottish accent by the time she is an old woman? LOL) to keep her alive. Isn't it cool? At first I was scared of it...but pretty soon after I loved it. So I kept it my WHOLE life just to show you youngins!"
It's funny, because as she was telling me these things...I could see the image in my mind...I could see her old and white haired...wrinkles lining her beautiful face...those same wise soulful eyes that have just a twinkle of mischieviousness in them. I could see her sitting there in her rocking chair with a circle of children around her...staring up at this pump with awe...listening to her every word and saying things like, "WOAHHHH! Grandma you were brave!!" and "Can I hold it? How did it work?" I can picture this vividly. I know that day will come...I know she will get to live that exact moment...and I know that I will probably not be around or alive to witness it...but I will be with her in her heart...and I will be watching down on her and her beautiful family...and I will smile. I will smile because I will remember that day...yesterday...and I will picture her little 8 year old self imagining her future...and it will be one of those rare sweet memories that became a reality.

Swinging to a victory

So a couple weeks ago I won a fantastic prize from Nicole's blog...We Cara Lot ...a $200 Visa Gift Card through Accu-check! SUCH a cool prize and I am usually never lucky with winning things, so it was all the more sweet to discover that I had won. I knew right off the bat what I wanted to spend my winnings on.....a swing for our deck. Back home in Wisconsin, my parents have one and every year that Emma and I go to visit them...we usually spend quite a bit of time out there swinging away and enjoying each other's company. So, I thought how nice that would be to finally have one of our own! Anyway, we found the perfect swing last week and the box had been sitting in my living room waiting to be assembled...waiting for a sunny day to come along...and the rain to stop...so we could put it together outside (even though I am quite sure Emma would have loved setting it up and leaving it in the living room!)
Yesterday I decided that I had waited long enough...and was bound and determined to put this thing together. I am smart...I am strong...I can do this...I don't need my husband to help...I'm a D-Mom...I can do anything, right?! I knew that the forecast called for thunderstorms...and that my husband was at work...but I didn't care. I wanted it done! I have a bit of a stubborn streak in me and I think that once I decide on something, there usually isn't much that will stop me. So, I carried the awkward box outside, had my tools ready, and was scanning the directions for step 1. As usual, whenever I take on a task that is out of my comfort zone....I am reminded of diabetes. I think about how in the beginning of this I would have given anything to have an instruction manual. I would have given anything to have someone there to tell me the precise answer to all of the issues that would arise on a daily basis. I didn't have that option though. Diabetes doesn't play that way. It is more of a fly by the seat of your pants kind of thing and learn as you go. So, I began to assemble this swing...step by step...taking my time and laying out all of the parts as I went along. I got so engrossed in what I was doing that I didn't notice the clouds rolling in until my neighbour shouted across the street to me that I better pack it in because the clouds were looking pretty scary. As if on cue, a low rumble of thunder echoed all around me and the skies opened up. I quickly threw everything back in the box and dragged it inside again. Once again my mind turned towards diabetes. No matter what we find ourselves battling during the day, we always make it through. The thunderstorm equivalent of a stubborn low blood sugar, a ketone extravaganza, or bubbles in the tubing of her pump....we always weather the storm and make it through. We have become masters at "riding it out" so to speak.
A couple of hours passed and I was able to resume assembly of the swing. Once again I dragged everything back outside and opened up my instruction manual. I discovered that I had screwed something on backwards...ugh...so I had to unscrew it, flip it around, and redo it the right way. I discovered that while I was doing this, Emma had "helped" by laying out each screw, nut, bolt, and cap....in a long line up...on various levels of the porch railing...like a "store".....ughhh...thanks, but ughh! So, as I went about fixing things, my end goal seemed to be getting further and further away. Once all was set right again, I moved on to the actual seat assembly step. I grabbed it out of the box and attempted to open it up. It was like one of those old school patio chairs that is sort of spring tension loaded..so it took quite a bit of wrenching to get it open...which probably should have been my first clue to keep it away from my face as I was pulling...but it wasn't...I held it right in front of me and pulled with all my might....and the seat eventually sprung open and wacked me right in the nose...I saw stars and immediately sat down right there in the driveway. Long story short, I am now sporting a swollen lumped nose...and a bruised ego.
This swing project is teaching me a lesson. Life isn't easy. There are always going to be things that get in your way and try to stop you from reaching your goal. The real point of it all is to keep moving...keep going no matter what. The whole lesson is learned in the journey and the obstacles you encounter along the way. If we always had it easy and went from point a to point b...or straight from step 1 to step 2 with no bumps...no bruises...no swollen and probably broken noses....we would never appreciate the things that we achieve! Yes, I do feel like a moron for what happened with my nose.....but at the same time, I am proud of myself...I took on a task that was out of my comfort zone and I kept going. I still have a couple of steps left to finish this swing, but I will get there...I will do it today and I will finish it. Just as in diabetes, I know there are (more than) a few steps left in our journey to a cure...but we will get there...we will do it...because we are strong and we have tenacity and we know the true meaning of perseverance...we have the guts to do it and we have just enough of that all important and often misunderstood stubborn streak in us.
So, when I am sitting on my new swing later today...leaning my head back, soaking in the sunshine and the peaceful rhythm of the back and forth motion...I will smile and know that this diabetes life is by far the most difficult task we have had to take on. I will smile and know that it started out being 100% out of our comfort zone. I will smile and know that we will get there one day...as long as we keep following those steps and weather the storms that life throws our way.

You might find me...

You might find me wandering the halls of Emma's school, blood sugar meter in hand, juice box tucked under my arm...looking a little out of place...a gleam of fear in my eyes and a nervousness about my steps....but I'm just doing my job...being a pancreas...because my daughter's does not work anymore.
You might find me standing next to you at the park, seeming to not be paying attention to a single word you are saying as I stare off into the distance.....but really I am listening...I'm just searching out my daughter as she runs by or hangs upside down from the monkey bars....scanning her face...searching for any sign of a low blood sugar.
You might find me opening up packages of candy or bottles of juice while walking through the grocery store and just handing them over to Emma without even paying for them first. I'm not a thief...I'm not teaching my kid the art of stealing...I'm merely giving her something that will stop her from falling on the floor, passing out, seizing, or even dying.....and don't worry...I will pay for it after I have saved her life once again.
You might find me sitting in the car at a red light, staring off into space, oblivious to the light changing to green....green means go....yes I know....but I am moving in slo-mo because I have been up all night going round for round with diabetes...making sure my kid will wake up in the morning...alive...and smiling. I will stay awake....so she can sleep.
You might find me sitting at the dinner table, lips moving as I silently calculate in my head the amount of carbs she is about to put into her mouth. I haven't lost my mind...or become a mime...I am simply doing math...so she can eat.
You might find me waiting in the wings...off on the sidelines...watching....on a school field trip. I'm not a weirdo...I'm not an overprotective Mom...I'm not hovering or being ridiculous....I'm simply trying to remain hidden...let my kid BE a kid...and at the same time still watch and be her pancreas...from a distance...because I want her to be a kid...and not be embarassed that I am there...and not resent me for it.
You might find me wearing the same clothes I wore yesterday, hair in disarray, glasses askew. I haven't lost my mind or the ability to take care of myself....I have just chosen to use my free moment to nap. Sleep is precious to me now and I will take it when I can get it....there is always time to shower and do laundry after.
You might find me sprinting into the gymnastics class, fruit snack in hand, chasing down my kid. I'm not some kind of freak....I've just spotted the signs of a low and am doing what I need to do to make it stop...to set it right...so my kid can continue on with her life.
You might find me chatting with the teacher, or the school secretary, or the janitor about their children or grandchildren...or the yard sale they had that weekend. I'm not one of those nosy parents...hanging out at the school for the sake of hanging out. I have simply been forced to spend more time within those school walls because of diabetes....and have learned a few things along the way....like showing kindness to those that are around your kid almost as many hours in the day as you....is never a bad thing.
You might find me doing all of these things at one point or another during the day or night. You might think it's sad or depressing or weird....but it's my life. We didn't sign up for it...we didn't choose it...we did nothing to bring it on. It is our life, and we are living it.

I will walk for you

It's definitely a night for reflecting. Tomorrow we will be participating in our 4th Walk for a cure. It hurts my heart to hear that number...4....4 times we have done this...and are still doing it...and there's still not a cure. 4 times of doing our best to raise money, educate, advocate, and participate. I decided long ago that I would do everything in my power to not let this disease win. I just don't have it in me to sit idly by and not do something. I have to stand up...I have to shout it out loud...I have to make our voices heard...and I have to walk. I remember our first Walk. It was my husband's birthday and he had to work...so it was just Emma and I walking with my father in law, brother in law, his wife, and my nephew. We didn't have any t-shirts or teams...it was just us....walking out in the sunshine...surrounded by a sea of people who live the same life we do. I didn't know what to expect. I didn't think it would turn out to be anything overly special honestly. I didn't think that it was really about anything other than raising money and awareness. Little did I know that it would affect me the way that it did though. I remember walking and choking back tears. This was who we were now....this was our life...we were part of this amazing group of people...we were one.
Here we are 4 years later, and it still astounds me how emotional I get. I walk beside my girl....my extra sweet insulin-challenged girl...and I see how she is growing up before my very eyes. She is not that little 4 year old girl anymore...crying over injections...angry over having to stop for a BG check. She is not that little 4 year old girl with bouncy little pigtails and chubby little cheeks. She is 8 now....my 8 year old daughter...and she is wise beyond her years. She now wears an insulin pump. She can work the buttons on that thing to bolus herself faster than anybody. She knows her body better...she is becoming more and more in tune with it and I can now rely on her more to tell me when she is low...when she's not feeling well...when something feels off. She still sometimes has those pigtails...but they now have pink streaks in them. She no longer has those chubby 4 year old cheeks anymore....but the dimples are still there...the dimples she gets from her Daddy. She is growing up right in front of me....and she is owning this life...she is owning this disease...she is still matching me step for step and keeping pace with me on this journey.
The Walk is symbolic of that journey for me...maybe for others too...we walk...in the rain, the sunshine, the wind, and the cold. We walk in teams....but really we are all walking as one. We walk over roads, sidewalks, and dirt paths filled with puddles. We walk arm in arm, smiling through tears, sharing our stories, making friends, and giving comfort. We walk because we must. We walk because we can. We walk for those that are no longer here to walk anymore. We walk for those that were taken from this path too soon. We walk for our families, our friends, and for strangers we have never met...and yet are still bonded to in the midst of it all. We walk for them all.
I will pick up my feet and put them down...step by step...on and on tomorrow...until we reach that finish line...that symbolic finish line. I will be walking for all of you...my D-Mom and D-Dad friends. I will be walking for my T1 friends and for Emma's T1 friends. I will be walking for that Mom who lost her child in the night to this awful disease. I will be walking for her. I will be walking for the Grandparents who wish that they could take this away from their grandchildren every single day. I will be walking for those that are struggling with every aspect of this disease...teenagers pretending like they don't have it because they don't want to be different. I will be walking for those babies that will never remember a life before diabetes. I will be walking for the often forgotten and misrepresented grown up T1's...all of our T1 kiddos will grow up to join their group someday. I will be walking for all of these people and more. I will be walking for my daughter....my extra sweet insulin-challenged daughter...my baby girl...my heart, my soul, my reason for breathing, the love of my life, forever and always....I will be walking for her....and I will continue to walk until I have no more breath in me to take another step...and my heart no longer beats. I will walk for her...always.