A perfect pancreas

That quest for perfection is a double edged sword. You are setting yourself up for failure daily...and yet you are still reaching for a lofty goal. Goals are good. They keep us moving ahead. They keep our minds focused on the horizon. Oh what a beautiful horizon it is. Soft warm oranges and reds swirling across the sky...that special kind of breathtaking beauty that is rare to find in this life. That's where perfection is. We keep walking along the dusty road...step after step...knowing in our hearts that eventually we will get there...and oh what joy we will feel then. It's that drive inside...that fight within that pushes you ever onward in an attempt to be the perfect pancreas for your child. As we walk along and see those long shadows forming around us...terrifying and looming on our hearts, we still keep moving. There is no time to glance behind us and peer across the lands already travelled...so we must file them away in our minds as the all-important "lesson learned"....or "mistake made"...or "victory achieved."
Keep looking ahead. Keep walking. Keep picking up your feet and placing them down in front of you. Let your chin fall to your chest if you have to. Let the salty tears cut tracks across your dusty cheeks and fall to the earth below your feet to be absorbed by the sands of time. Mutter thoughts of failure to yourself. Don't be afraid to speak those words. Don't feel like if you speak them aloud, that they will become too real...too tangible. Mutter them to yourself...to your dust covered feet. Get them out of your head and out of your heart. It's ok to be mad at yourself. It's ok to feel like you have failed. It's ok to cry.

as long as you keep moving. Just keep moving.

You will get there one day. You will reach that horizon and you will feel the joy...not because you have reached the land of pancreas perfection.....but rather because you will have discovered that there is no such thing....pancreas perfection....or perfection in general really. You will feel the joy...the warmth of that breathtaking sunset...the oranges and reds and yellows washing over you...across your tear stained and dirty cheeks...swirling across your aching shoulders...and all around. You will feel the joy because you have reached the land of acceptance. Acceptance for the life you have been given, the disease that invaded your home, and the knowledge that you can not be a perfect pancreas. Simply put....you can be YOU....and that in itself is perfect enough.

We speak diabetes...do you speak diabetes?

This morning as Emma and I were standing on the school playground waiting for the bell to ring, I had to smile at the sight before me. She is not really at that age anymore where she feels the need to stand right next to me or anything. She was leaning up against the wall and all of her friends were gathered around giggling and chatting away about the usual 2nd grade girl things...Monster High dolls, how crazy the boys are, and upcoming birthdays. Emma's one friend leaned over and offered her a lifesaver candy as they were chatting. I stood back and kept quiet...I wanted to see what Emma would say...if she would accept one and just pop it in her mouth without a second thought...or if she would take one and ask me how many carbs were in it. Well.....true to form, she did neither...she actually didn't take one. It seemed like such an insignificant thing...and yet I can't seem to get it out of my head. I am sitting here wondering if she refused one simply because she didn't WANT one....or if she just didn't want to be bothered with stepping away from the kid conversation to go ask me the carb count. OR was it that she didn't want to draw attention to her diabetes...pull her pump out and bolus for something so small. I guess I could have the answer to my question if I would just ask her about it.
But I don't want to ask her. I don't want to bring up yet another thing about diabetes with her. Sometimes I feel like we talk about diabetes entirely too much in this house. I know it's sometimes unavoidable due to the day to day routine of it all..."what's your BG? how many carbs is in that? We need to make a ratio change. Come here so I can set a temp basal before you go out and ride your bike!" (btw, I would give anything for Animas to come out with the temp basal feature on the meter/remote....it's the ONE thing I have wished for that you can't do with that remote!) We talk about diabetes whether we intend to or not. It can't be helped really. There are definitely times where it feels like our own 2nd language. We speak diabetes...do you speak diabetes?
So, when situations like this morning occur and I find myself wondering the ever present "why?"....I try to just let it go. I don't want Emma to grow up feeling like all she ever heard about from me was somehow in some way, shape, or form related to diabetes. I need to accept the fact that she is growing up and she has been living with this for almost 4 years now...and if a seemingly insignificant moment in life (like the lifesaver candy refusal) actually bothers her.....I need to trust in that belief that she will bring it up to me...that she will feel comfortable enough in our relationship to talk to me about these things. All I can continue to do at this point is keep laying the groundwork....keep building on that foundation of being her safe spot to land...comforting, no judgement, just a safe place. I hope I am doing that....I suppose only time will tell.

The smoothie situation of 2012

Do you ever find yourself trying to make something work out perfectly when it comes to diabetes? Do you ever want to make it happen so bad that it takes every last ounce of your mental strength to not let it consume you? Sometimes I find myself doing exactly this....like yesterday for example.
Emma has taken piano lessons for almost 2 years now and this year it is always on Mondays after dinner. Well, on the car ride there I decided to stop off at Tim Horton's to grab a tea and as a spur of the moment thing I got Emma a small strawberry banana smoothie. I had never actually gotten her a smoothie since she was diagnosed. Before pumping I was always worried about trying to figure out accurate carb counts and how to measure it out so she wouldn't go over her alloted 25 carb snack maximum....so I never bothered to get her one...and she never asked for one anyway. Post pumping, the thought never honestly crossed my mind....I think it was a case of she didn't really know what she was missing because it had been so many years since she had one. In any case, like the good D-Mom I am...I asked for a nutrition guide and discovered that there are 33g of carbs in a SMALL smoothie...OI....it was so small that honestly I could have drank the entire thing in three swigs no problem. Well, seeing as how we are coming up on 11 months of pumping...I felt confident anyway. I asked Emma if she thought she would drink the whole thing because she has a tendency to drink...set it down for 20 minutes...pick it up...drink...set it down. She told me she would probably only drink half of it, so I told her to bolus for 15 carbs just to be on the safe side. So, off I went driving along to piano. About 20 minutes later, we arrive and I turned around to look at her as I parked the car and see that she drank the entire thing.....ugh. I asked her what happened to only drinking half and why didn't she tell me so she could bolus for the rest...and she gave the standard 8 year old girl answer, "I don't KNOW Mommy!"
So, to make a long story short...she bolused for the remainder, tested at a 21.1 mmol....and spent the next half an hour in piano struggling to concentrate. She's had enough high blood sugars over the years....but I have never seen her struggle like that before....it was depressing, worrying, and eye-opening to be honest. It gave me a glimpse into how things could be when she is in higher grades in school and taking more tests, etc. I was left with an empty feeling once again...caught in that limbo stage of diabetes management that I am all too familiar with. Worrying about her future, daily struggles, and yet stuck in the present wanting to make it all go away to avoid that imagined future.
We got home and I did a site change because she was now 25.6...new insulin, new site, new everything...just cause...I knew it was the smoothies fault...but I think I just wanted to feel productive and proactive. I spoke with my Mom later on the night and told her of our ordeal and she jokingly (?) said to tell Emma that Nana said no more smoothies please! It got me thinking though...I hate that...I was told from day one that she can eat anything she wants. I have lived the past almost 4 years by that philosophy...and made it work for the most part (pizza is another story...grrr!). I did not want to just cut that option out of her life for good. I want to make it work. I want to figure out what went wrong and try it again. I want to find that perfect pattern...be it a needed combo bolus, a prebolus of 20 minutes, or whatever....I just want to make it work.
So here I sit....obsessing over a damn smoothie. Thoughts of the cool strawberry banana goodness...and carbs...insulin...pumps...bolusing. I get like this fire in my mind that makes the determination to make it work come out so strong that it's all I can think of. I must make it work. I can't let the smoothie beat me. I can't let diabetes beat me. It's my kid and if she wants a damn smoothie, I should be smart enough in my pancreatic abilities by now to make it work right!
Diabetes has taught me many things over the years....so many of them are sad, horrible things....but every once and a while one of those good things pops up....like this....I am greatful that diabetes has given me such a strong sense of determination.
All of this from a small smoothie....sheesh.

A weekend of awesomeness

Well this weekend was definitely one for the record books. Friday night marked Emma's very first sleepover and to say she was excited would be the understatement of the century. Before you think to yourself, "Wow! great job on the brave D-Mom thing, Amy! Way to suck it up and let her sleepover at a friends house and not worry yourself into a stupor over her blood sugars all night!"........she actually had her friend sleep at our house. Yea, I'm not ready for all that worry yet. I know it is coming sooner rather than later...and I know I will have to suck it up and figure it out somehow and probably convince some unsuspecting parent to either (A) set their alarm for 2am to check Emma's BG....or (B) give Emma a cell phone with an alarm set and/or call her at 2am and expect her to check her own BG.....yea, I'm not ready for all that yet. SO....her friend came over here and they had a blast. Two little 8 yr. old girls can sure giggle about anything and everything for hours on end. It brought back so many memories for me of all the sleepovers I went to growing up. I think those sleepover parties are such an important experience growing up. It teaches you to gain a little independence because you don't have your own parents around all night telling you to not do something...or to go brush your teeth...or that it's time for bed! You learn just how important that bond is between girls. How you can share secrets and crushes. You can talk about things that bother you, things that you like, how your parents can be annoying about some things. That bond is so special and I believe it truly is formed and displayed at these sleepovers. Emma's blood sugars stayed decent, she got to enjoy just as many snacks and treats as her friend, and the look on her face in this picture is priceless to me. It is honestly the definition of happiness.

The weekend continued when on Saturday night I got to go out to see "The Hunger Games" with some D-Mom friends and a T1 friend. First of all, I have read the books and was really looking forward to seeing the movie. It was amazing! I loved being able to go see it with all of these women who are affected in some way by diabetes as well. It made me realize that the bond Emma experienced with her little friend at the sleepover was really just like the bond my D-friends and I share. We sat there taking up an entire row in the theater...laughing, throwing popcorn at each other before the movie, talking about anything and everything before it started. This was the very first movie I had gone to see in about 8 years that didn't have a single thing to do with cartoons, Disney, or anything related to Judy Moody. It was such an incredible feeling to sit there with friends and not worry about having to check anyones blood sugar in the dark. I got my own popcorn, my own drink, and I didn't have to share it...I didn't have to worry about bringing along enough low snacks for Emma...just in case. It felt good.

Finally, Sunday morning rolled around and Emma decided she wanted to learn how to ride her bike finally. I know she's 8 years old...and usually kids learn how to ride their bikes without training wheels by this age....but Emma was never really one to want to ride it up until now. She would have much rather rode her scooter, or played hopscotch, or jumped on the cursed blood sugar dropping trampoline...lol. So, we practiced for a while in the morning....me running alongside her...holding on to the seat of the bike as she peddled along...helping her keep balance...encouraging her. She was concentrating so hard and was so determined to get this. After a few moments of me letting go, she decided she wanted to take a break and play with her toys instead. After supper she asked to go out again and practice....within minutes she had it. I let go of the seat and watched her ride ahead of me....her hair streaming out from under her bike helmet....flying behind her in the wind. I raced to keep up with her...my heart was racing...with pride...and fear...all rolled into one. I was so proud of her determination...she wanted to learn and she made it happen...she put in the work and practiced and she made it happen. I think that is amazing. I was terrified that she would wobble and fall...break her arm...ride into a tree or telephone pole...go flying off the bike. Thoughts of blood and broken bones and what these injuries would do to her pump or to her blood sugars were racing through my head....and then she stopped...put her feet down...and turned around and looked at me with a smile so sweet I will never forget it. Her cheeks were flushed with excitement and pride...and she had never looked more beautiful.

It was definitely a weekend I won't forget.

I wanna hold your hand

From the time Emma started to learn how to walk, I was holding her hand. Taking her first wobbly steps across the living room floor from me to her Daddy always began with me holding onto her little hands until she got her balance about her...and I would let go...she would take off, one shaky step after another. Once she reached Daddy she would squeal with delight. Throughout the years I have held her hand on many different occasions. While walking across parking lots, through the store, and into her classroom on the first day of kindergarten. I held her hand as she walked across giant rocks lining the edges of yards. I held it when she was not feeling well and just needed the comfort of her Mommy. I held it (and still do!) every time she had to get bloodwork taken at the hospital. I held it when she was sick with a stomach virus and we had to take her to the ER and they put an IV into her. I tried to soothe her..stroking her hand...holding it tight in mine and assuring her that it would be ok...she would be ok...it would be over soon and everything would be alright. I held her hand in mine as I walked her into her first gymnastics class and she was feeling nervous...it was something new...and there were so many unfamiliar faces...and she was shy. I held it as we trudged up the snowy hill to go sledding together. I held it as she was learning how to ice skate...ankles shaking...wobbling along on the blades of her new skates. I have held her hand in the dark of night as I watch her sleep...praying with everything I have that a cure will be found for her diabetes. I held it in the wee hours of the morning as she is burning with fever..cheeks flushed...sweat pouring off her brow...praying for the illness to pass. I have held her hand in mine for many different reasons in our 8 years together. Yes, her hand is not quite as small as it used to feel anymore. I can't wrap my own hand protectively around her tiny one completely like I used to. At 8 years old, she doesn't necessarily want to hold my hand as much as she used to either...she is getting bigger...it's not as "cool" to hold her Mommy's hand anymore.
That's why when moments come along....something as simple as walking her back to school after lunch...and she grabs ahold of my hand all on her own...just because....it's incredible. It may seem like an insignificant little gesture to her....but to me?.....it melts my heart and reminds me that before I know it, she will be grown...and the moments of holding her Mommy's hand will be even fewer and farther between. So, I tell myself to shut off the D-Mom brain...silence the thoughts of blood sugars, ratios, basals, carbs.....and focus on the moment....remember how it feels to hold her 8 year old hand...remember the small things.

Dreaming of diabetes...Emma's version

The other day something happened that kind of hit me hard. It knocked the breath out of me and I felt the tears stinging my eyes. Unfortunately, I am all to familiar with the feeling since diabetes came into our lives. I have to admit though, that I have gotten pretty good at catching my breath and furiously blinking those tears away now. Except for a few days ago...it caught me off guard.
I was going about my usual morning routine...checking Emma's BG, getting her breakfast, packing her snacks for school...bleary-eyed and full on bed head happening. As I bolused her for her food, she casually started talking about a dream she had during the night. As a side note, I think it's important to share that Emma is a total morning person...as soon as her big brown eyes open, she is up and out of bed and chattering away...seeming to make up for all those lost hours of not talking while she was asleep. I am the complete opposite. I open my eyes and have that argument with myself every morning..."you have to get up...get up...you're going to make her late for school...get up already...but it's so warm and cozy under the blankets...I'm just gonna close my eyes a little bit longer...why is no one shutting off that irritating alarm?....oh yea...cause I'm the Mom...I have to shut it off...get up..get up already!...she could be low, ya know....ok FINE I'm up..i'm up...i'm UP!" I don't like to chit chat in the morning until I have been up for a while...had a cup of coffee...and gotten my bearings about me. We are quite the odd couple puttering about the house at 7:15am every morning before school.
Anyway, she starts to tell me about this dream she had and I gave the obligatory "mmm-hmm" in all the right places...listening as best I could in my sleep-deprived morning stupor. Until I heard her mention that in her dream she was at school and her teacher was trying to make her change the basal rates on her pump. I instantly woke up...snapped back to reality and looked at her face as she was talking. Even though it was merely a dream, I could see the look of concern and panic on her face. She was getting flustered as she recalled the dream and was explaining to me how she felt small and ignored...and like no one was listening to her and she was yelling that she COULDN'T change the basals without telling her Mom first. She said that she was grasping her pump in both hands and kept turning away from the teacher...protecting the pump...keeping it away from the teacher. She was scared. Emma is not one to go against authority and usually will always do what an adult in a position of authority will tell her to do. She was torn...she wanted to protect her pump...protect herself...stop this teacher from messing things up and causing a dangerous situation for her. She was afraid. She was also worried that she would get in trouble if she didn't let the teacher do it.
As I blinked away the tears and made my face seem perfectly normal...hiding the fact that on the inside I was a mess....I saw how badly this affected her. I saw it...and it broke my heart. I don't know what was worse...the actual dream itself and the struggle that Emma described to me? Or the simple fact alone that she also dreams diabetes? I know that I have had countless dreams/nightmares about the big D since it entered our lives....but I didn't really think about the fact that she probably does too. I mean it is HER diabetes...her pump...her life....it's only natural that it would also be in her subconscious causing her to dream about it.
I think that makes me sad most of all....the fact that diabetes tries to shove itself into all of the nooks and crannies. I can handle it robbing me of sleep and pleasant dreams.....but it makes me really sad to know that it invades Emma's sleep and dreams too.

Everything is not what it seems

Everything is not what it seems. That little girl you see walking through the crowded marketplace...with the dark circles under her eyes...that cause you to do a double take? She's diabetic. Not the "kind of diabetic" that she caused herself...or her Mom caused for her. It's not the "kind of diabetic" that can be fixed with diet...she won't grow out of it. Sure she looks happy...she looks healthy aside from those dark circles...that far off glint in her eyes. There's something about her that makes you pause for a second...whether you realize or not that you are pausing. She has an aura about her that radiates strength....and yet when those dark circles make an appearance...the aura is tarnished with a gleam of helplessness. That gleam is with her always. She is a little girl...just like your little girl...just like EVERY little girl. She carries around this gleam that threatens to tarnish her aura every single minute of every single day.
Everything is not what it seems. When your own little girl stands and stares at this little girl with the dark circles under her eyes, do not try to distract her...do not try to hide it from her....do not be embarassed by your little girls curiosity. Embrace the differences amongst our little girls. Be greatful for the simple ease that comes with eating in your life. Did you hear me? Be greatful. For one day, the rug could be yanked out from underneath your feet...your little girl's feet....and you could see the dark circles appear in her eyes. Don't judge her. Don't judge her Mom. Don't feel sorry for her. Don't look at her with eyes filled with pity and a sad smile upon your face. That doesn't help. It doesn't make anything better.
Everything is not what it seems. That little girl you see pricking her finger and squeezing a drop of blood out before eating....she is living. She is taking the lemons life has handed her and she is making the world's best tasting lemonade. She is making it work. She is being a little girl. Sit back and watch the tarnish disappear from her aura of strength and watch those dark circles disappear. Eventually they will...it won't take long. You will see the innocence and joy return to her eyes as that far off look of a low blood sugar leaves her. You will see her laugh...you will see her smile...you will see her be a little girl....just a regualr little girl...eating her lunch...and drinking deep from her cup of lemonade. She is living.

A poem for a low

Sitting down upon the cement steps
in front of a random store.
another pin to add to my life map,
my diabetes map.
Feeling the sun upon my face
I hand you juice and candy, once again
To begin the awful game of wait, once again
My heart is racing as I stare at your face, once again
the dark circles
the pale cheeks full of grace
the wisdom filling every space
I force the smile and look of confidence,
for I know you are staring at my face too
Searching for a reason to worry
a reason to be scared
I reassure you with a joke
a smile
a laugh
I wonder how many times we have shared moments like this
how many steps we've sat upon
how many random floors
in random stores
how many curbs
on random lots
in random parks
how many fields of tall grass
in random hideaways
of our random life
how many more of these moments will we have to share
have to endure
have to survive
you finish your medicine
of fast acting carbs
and we sit a while longer
soaking in the sun
the warmth
the light
the love
Left stuck on pause
as we watch the world around us seeming to be stuck on
fast forward,
oblivious to the world around them...
before pressing play and
moving on about our day.

Pink eye shmink eye

Sometimes you can rock this diabetes thing to the extreme. You can battle the low blood sugars like a Jedi master. You can set that perfect temp basal overnight to keep things steady after an activity and excitement filled day of fun out in the sunshine. You can hand over the low snacks while she runs across the park chasing after a friend without even causing her to break stride. You can spot her in a crowded line up of kids all screaming and laughing...playing and enjoying their March Break. You can see just by the look on her face if she is dropping...you can tell if that flush to her cheeks is from the sun, the exertion from playing, the excitement at seeing old friends, or a plummeting blood sugar. You just get it right. You can stand there drinking your coffee, chatting with other Mom's about every day Mom things, pull out the meter bag, pop a strip in that sucker, grab her finger as she flies by you giggling and get the droplet of blood on the strip to see what her number actually is....all without missing a beat...still involved in that conversation about the school. You are knocking diabetes to the ground. You feel in control. You feel like you are running the show. You feel like you could conquer the world if you wanted to. Sometimes you get it right....you get it SO right that you find yourself unable to stop smiling. You are going on instinct and every single decision, guess, and move you make turns out to be right. Sometimes you feel like a rockstar. Sometimes you feel like you can do anything.

and then you discover that you got pink eye...................

most likely from the park you spent all day at....being a D-Mom rockstar......

Yep. Pink eye, shmink eye

The differences among us

Diabetes is different. It's different from cancer, from a cold, or from any other illness. There are differences within the blanket description of "diabetes" as well...type 1, type 2, gestational, etc. There are different ways of managing diabetes....injections, pills (for type 2's), insulin pumps. There are different types of insulins to use...lantus, levemir, novo rapid, humalog, etc. There are people on 2 injections a day, 8 injections a day, or doing site changes for their pumps every 3 days. What works for one person living with this disease may not work for another. What works for one person living with this disease may very well not work for that same person the very next day! Diabetes is full of differences.
I think we have a choice in all of this though. We can either choose to embrace the differences among us....or we can choose to shut them out. In my opinion, if we shut them out...we are losing a very valuable part of this experience. There are always going to be people that see sunshine and roses...happy days and positivity in all. They will of course come across the same things that we do...heartache, frustrations with crazy blood sugar readings, sleepless nights, and ignorance. They will experience these things and for whatever reason...they are able to flip the coin over and find the positive in it. A crazy blood sugar reading will turn into a positive for them because it will have taught them how to work the situation next time and possibly get a better result. Sleepless nights will teach them to appreciate those nights where they are actually able to get a good sleep. Ignorance will teach them the importance of educating the world around them.
Those that choose to shut out the differences are not necessarily wrong either. In my opinion, they are probably realists at heart. They can focus on what is in front of them and know that the bad days will occur...know that this life is full of guesses and unknowns...it's essentially a life of living in the gray areas. The trick though is being able to find that light within the grayness...being able to not necessarily be complacent there...but rather make that space as comfortable and livable as possible.
I'm not really sure what choice I would fall into to be honest. We are nearly 4 years into this life and some days I am completely overwhelmed...exhausted...sick of it all and bartering with God to make this nightmare just end already. Then there are days where I am confident...I am in the driver's seat...I am making things happen and seeing sunshine all around.
Through it all though, I always try to be mindful and respectful of other people's feelings. I would never tell someone that they should change what they think or what they say. I would never tell someone that they are doing something wrong in managing their diabetes or their child's diabetes. I would never impose my views, my methods, or my way of doing things on others. I don't think it is right. I think the very definition of diabetes management is (or should be anyway!)...to each his own. While yes there are obvious standard rules to follow...I feel that we should all have a bit of respect for each other. Because really....there is no life like a D-life. We all struggle (whether or not we will admit it!), we all have down days, we all have moments of despair and exhaustion, we all strive to be the best pancreas we can be, we all want a cure, we all KNOW what this life entails, and we all love our kids. So rather than divide amongst ourselves and cause extra stress or hurt feelings....why not stick together? Why not huddle up and weather the D-storm together? Why not stand as one...fight as one...stick up for each other instead of put each other down? I believe having one voice full of a thousand different tones is much more beautiful and powerful then a division of jumbled notes echoing all around us.

What no one will tell you in the beginning

I'm not gonna lie to you. I won't sugar coat it. I am going to lay it all out on the line for you. Not in an attempt to scare you or give you nightmares...but rather in an attempt to prepare you...to help you...to shine the light on it all for you because I really wish that someone had been there to shine the light for me and be honest from the get go. So, if you are not a fan of the truth or blatant honesty...then please read no further.
This life with diabetes is hard. It will always be hard. It will never be how it once was. The way that you lived your life before diagnosis will never be again. Those days of carefree easy freedom are gone. The days of having your biggest worry be whether or not your child behaved at school are but a mere memory now. You will long for those days. You will bargain to get them back. You will pray for them to return. You will cry. You will cry. You will cry. You will never have a decent full nights worry free sleep again. It just will not happen. Do NOT believe the doctors when they tell you that you do not need to check your child's blood sugar overnight. You will never kiss your child goodbye as you drop them off at school, daycare, etc the same way again. You will linger with that parting hug just a bit longer...holding them...staring in their eyes to search for any signs of impending low blood sugars once you are gone. You will never look at activity or physical exercise the same way again. You won't see it as a "good way to burn off some of their never ending energy"...but rather as falling blood sugar numbers and "how long have they been running around? Do they look pale? Where did I put that juicebox? You will never look at food the same way again. It will no longer be about quickly grabbing dinner on the way home...or skipping lunch because you are out busy running errands. It will be about pre-planning, measuring carbs, giving insulin at the proper point in time to combat high blood sugars, making sure the restaurant has nutrition guides to help you determing carb counts, and guessing...always guessing. Life will never be about the black and white obvious clear cut answer anymore. There is no book or manual out there that you can reference to get a specific answer to your detailed questions. There are only guesses...some guesses are more educated than others...but they are all still guesses. You will learn that doctors, nurses, and all other members of the medical field do NOT know as much as you once though they did. You will learn that over time, you will probably know the ins and outs of diabetes management better than they do honestly. You will learn that diabetes doesn't play fair. It doesn't follow any rules but it's own. You will learn that what works one day, may or may not work the next day. You will learn that nothing is for certain. You will learn how to plan for the worst case scenario...all the while knowing that you really have no idea how you will react if that scenario ever actually comes to be. You will learn that you and your child will be judged. You will encounter ignorance. You will encounter rudeness...discrimination. You will learn that you have to choose how you react to that ignorance...you can either get angry and stoop to their level in response....or you can get angry and educate them instead..advocate for your child instead. You will feel like a broken record...repeating the same few lines over and over again to the ignorant masses. My child did not get diabetes from eating too much sugar. My child can not be cured just by not feeding them foods with sugar in it anymore. My child CAN eat anything. My child CAN do anything. No she will not grow out of it. You will be sad. You will cry. You will cry. You will cry. You will feel what true exhaustion feels like. You will be jealous of parents who have children that are not type 1 diabetic. You will feel like you can't relate to those parents or friends anymore. You will find out who your true friends are. You will find out who will be there for you in your time of need. You will find out who actually cares and who could really care less. You will feel like you just...can't....do...this...anymore.........................

but you can.

You will learn that no matter what life throws at you, you and your child CAN DO THIS. You will find out that you are a lot stronger than you ever thought you were. You will see that your child is stronger and more brave than most adults. You will see that while yes this life is hard.....it does get easier. You will find comfort and solace in the familiar...the routine. You will gain confidence as the days go by. That is where you will find things a tad bit easier....in the confidence you gain. You will find comfort in others. You will feel a connection...a bond with other parents going through this same thing. You will gain a new family in them. You will find yourself wanting to help them...going out of your way to help them...to help their child when they are struggling. You will find yourself crying with them, laughing with them, proud of them. You will feel a connection with your own child that would otherwise never had been possible. You will get to know how their body reacts to things...foods, activity, emotions, stress. You will learn their patterns. Seek out the patterns for they are your key to finding some sanity. You will realize that you CAN do this. Sure there will still be days that pass where you feel like diabetes has knocked you to the ground...flat on your face..beating you, but those days will pass...the sun will come out tomorrow and shine on a new day. You can do this. You will cry, you will smile, you will feel pride, joy, anger, sorrow, jealousy, grief, exhaustion, fear, stress, pain.......you will feel all these things and more...to such an extreme level as well. Please do not ever forget, you can do this....you ARE doing this....you are strong...and you are doing this.

The silence is easier

"Give me hope in silence, it's easier...it's kinder..."

I love that line. It's from a Mumford and Sons song called "The Enemy" and in the movie "Wuthering Heights." Sometimes diabetes seems so loud. It seems so excruciatingly loud. Low blood sugars, illnesses, worry of the future, worry when she's not near....it's so loud. The constant-ness of it...it's always there, always present, in everything we do and everything that happens. The noise is deafening sometimes. I can be standing in a room full of people and feel this overwhelming urge to scream my fool head off sometimes. I stand there surrounded by normal every day things, and I have to bite my lip just to hold in the scream of exhaustion...the scream of frustration...the scream of just wanting to get a break in my mind from all of the numbers. Do you have any idea what it is like to have a constant stream of numbers floating around in your head? Never ending numbers...what was her blood sugar this morning? How many carbs did she eat yesterday at snack time? What is her insulin to carb ratio? What time did I change that basal rate? When was the last time I checked her? When was the last time I slept? The noise of the numbers can sometimes rival that of a summer's night concert at Soldier Field stadium in Chicago...except instead of the great outdoors and the beautiful night sky to consume the noise, it is just my head...just my own mind left there to somehow listen to all of that noise.
So, when I sit here late at night...in the silence...it's nice. It's quiet. Sure on some of the really hard days that is the time when the noise of the numbers will hit me the worst....but many times that is when I can just sit...and enjoy the silence...find the hope in the silence. I can sit there and close my eyes...soak it in and relish every single fleeting moment of that blissful silence. The silence in those moments is definitely kinder and helps me get through the loud days a little easier.

Diabetes has taught me

I've realized that diabetes has taught me how to compartmentalize things in my mind. I don't know if that's a good thing or not, but it's what I do now. If Emma has a low blood sugar, like tonight for example...for some reason I am able to step by step do what needs to be done to get it back up to a safe number again. Sure my heart is pounding in my throat, my my hands are shaking, and I am freezing and sweating all at the same time because of the fear and pure panic that comes with a life threatening situation like that. But I am able to steady my hands, guide the straw on the juicebox to her lips and wait as she slurps away in her half awake half asleep state. I am able to hold that straw there until she is finished. I am able to throw the empty box away, sit down, and stare at the clock as I am trapped in my 15 minute sentence of living hell while I wait for the most precious medicine in our house that is juice to do it's job...bring her blood sugar back up...fix it...so she isn't in danger anymore. I'm stuck there...frozen in place...waiting. I am able to hold off that terror and check her once the 15 minutes is up to make sure she is ok now.
Once it is all said and done, I begin to compartmentalize my crazy thoughts. She didn't wake up. She was laying there in her bed sleeping peacefully. Yes it was a "normal" time to check her anyway, but what if I had been on the phone with my Mom and waited those few extra minutes to check her like I have done a few times in the past. What if I had fallen asleep on the couch and missed the check by hours? Would she have dropped so low that she would have had a seizure or even died in her sleep while I was oblivious to it all asleep myself on the couch downstairs? Would she have awoken eventually after dropping even further and called for me to help and I wouldn't have heard her because I was asleep? Would she have attempted to get up and out of bed herself and drag herself downstairs seeking juice or seeking me? Or would she have continued to lie there calling my name, wondering why I wasn't coming to save her? I take all of those questions and "what ifs" and compartmentalize them....I gather them up and store them away in the deepest darkest recesses of my mind...in that corner where I tend to shove things that are just a little too scary or too real or too possible because I just can't accept the reality of them.
I compartmentalize the thoughts of how in the world I will be able to trust that she will awaken from her lows when she is grown and living in her own house. How will I ever be able to let her go? How will I ever be able to trust that she can do it on her own? How can I just let go and be confident that she will set her alarm and wake up to check herself in the middle of the night? What if she never gets to a point where she will awaken if she is low? What if this is how it will be for the rest of her life or until a cure is found? How will I force myself to be ok with that once she is out of my reach? I take those thoughts and after shedding a few tears for them, I compartmentalize them and try to push them from my mind altogether...because I just can't go there yet...I just can't do it...I can't accept it or even fathom how it will be in the future.
Diabetes has taught me ways of how to cope I suppose...how to find some semblance of normalcy in this crazed life we live.

For Meri and her family

There is a woman out there that I have never met. I've never spoken to her, never emailed, never chatted on Facebook...and yet she has been in my thoughts all day today. I have read her blog posts many times. I've laughed, I've cried, I've felt that connection that occurs when reading the words of another D-Mom. Her family is struggling at the moment. The are in need of a miracle. She has 4 children and 3 of them are type 1 diabetic. Her husband has battled cancer once already in his life and is now battling it again. They are fighters. They are strong. I do not know this family, but I feel like I do from reading Meri's words and how she describes them. The love she has for her family...her children...her husband...it is inspiring to say the least.
I went about my day today like usual. It was full of the typical Sunday activities....laundry, dishes, cooking. I took Emma to go see "The Lorax", we spent some quality time together as a family.....and all the while thoughts of Meri kept popping into my head. Wondering what her and her family were doing at that moment in time...wondering if her husband Ryan was ok...if he was in pain...if he was struggling. I wondered if Meri's beautiful boys were scared...if they were overcome with fear over what was occuring with their Dad. I wondered if Meri was ok...if she was struggling and trying to be brave for her boys. I wondered if she was sitting there holding her husband's hand and praying...praying with all of her heart and soul for a miracle.
I know my words and my thoughts of this family might not seem like much in the grand scheme of things because, like I said, I do not know Meri...I do not know her beautiful family. I do hope though that there were many others out there in this world praying for them...praying for them together and sending out all of their love and their light and their healing thoughts. I hope that the powers that be will hear these pleas. Whatever you choose to believe in, whatever you choose is right in your own heart...I hope that you will take a minute today to stop and think of Meri and her family and send out your own healing thoughts, your light, your prayers. I hope that Meri and her family will feel the love and they will be comforted by it in some way. I hope that they will feel a peace in their hearts knowing that they are not alone.
I know you may never read my words, Meri...but if you happen across this post...I just want you to know that I believe. I believe in miracles because I have seen them first hand. I have seen them in the eyes of my own daughter. I have seen them in the world around me. I believe. I am sending out my light and my prayers to you all and I am standing alongside you giving you my strength when you need it most. Thank you for being you.

A poem for a sleeping child

Emma had trouble falling asleep tonight, so I decided to lie down next to her for a while...and this came to my mind.

Lying there next to you
Surrounded by a mountain of childhood joy
gently brushing the hair from your face
I whisper to you
it will be ok.
Drift away to a quiet place
a place full of sunshine and smiles
Laughter ringing through the trees and echoing across the sky
Drift away to the moon and the stars
to the places you imagine.
A far off land
full of wizards and elfs
magic and dreams.
Drift away to your castle in the clouds
where you are princess
and there are fairytale creatures abound.
Drift away to the forest full of critters at play
fluffy bunnies that talk
and beautiful birds that sing.
Drift away to this place that is yours
created for you
imagined by you
safe, happy, and peacefully there for you.
While you are there
enjoying your time
a smile upon your face
diabetes gone from your body and mind,
I will be lying here next to you
keeping you safe
brushing the hair from your face
holding you in my arms
feeling your heart beat beneath my palm
and your sweet breath against my cheek.
I will be here
imagining your happy land
and sending sweet messages through the wind.
I will be here waiting for your return
to see your beautiful eyes open
full of love
full of youth
and my heart will be whole again.

Hope

There are few words in the English language that can hold many different meanings really. I believe that "hope" is definitely one of them. A person can hope for good weather...a good mark on an exam...for the phone to ring and have that special someone on the other end. A person can hope for their worries to end...for the stresses in their life to ease up...for the light to appear at the end of a long dark tunnel full of hardships and fears. A child can hope to get that certain toy they have been desiring...to be invited to a friends birthday party...to have the chance to stay up past their bedtime.
Hope in my opinion is probably one of the most powerful emotions out there. If you hold it close enough to your heart and have faith that it will carry you through to the end, it can and will do just that. Hope is a thing of beauty. It can lift the weight of the world from your shoulders and help you continue on step after step when everything else around you is trying to make you believe that you can't.
As a D-Mom, I can honestly say that hope has carried me through so many times...so many of those dark scary moments...sitting there at 3:00 in the morning watching my ill fevered sleeping daughter lie there. Hope got me through those times. I could feel the fear of the unknown and the worry for her future threatening to take control of my mind and burning like poison in my heart. Having hope helped wash away that fear and that burning. When Emma was diagnosed, I can't say that I really had much hope. I was ignorant...I knew virtually nothing about type 1 diabetes. I had no hope for a "normal" childhood...I simply had visions of tears, anger, and always having to deprive her of things. As the days passed though and I became more educated, I could feel that hope growing.
Hope is like a warm blanket on a bitterly cold winter night. Comforting...safe...protecting you from all. It is the raw emotions left behind when you feel like all of your courage and bravery and tenacity have left the building.
Hope is there. I have hope. I will always have hope. When all else has failed and I feel like throwing my hands up in defeat....letting diabetes win this round...knocking me to the ground...flat on my face...no energy, no strength, no fight left in me......hope is there....it's always there.
I never really knew the true meaning of hope until Emma was diagnosed. I never knew what it would feel like to want something so badly....to want it with every single fibre of my being...with every single ounce of my heart and soul....to want it more than the air I breathe. I never knew that feeling...and now I do....I want a cure. I have hope for a cure and no one can take that hope away from me.
To live this diabetic life happily takes many things. I think a few of the most important things are strength...strength of mind, body, spirit, and heart. It takes bravery....not just your average "pull up your big girl panties and do it" kind of bravery either....I am talking full out you must do this to live...to continue breathing...to see the next smile...the next day...kind of bravery. It takes perseverance. You must be able to keep going...keep checking...keep adjusting...keep guessing at how the future #'s will play out...keep going one foot in front of the other. Finally I believe it takes hope. You need to have a tremendous amount of hope to live this life.....because when everything else is against you...the #'s, the odds, the world....hope is all you have left to hold on to.
I have hope. I will always have hope.