Wednesday, July 31, 2013

I Have More Than Enough

Be greatful for what you have. Seriously...look around you and be truly greatful.

Sometimes I get caught up in thinking about all of the things I wish I had. Not simply material things...but LIFE things. Obviously I wish my kid didn't have diabetes. I wish our family had more money to be able to take time off of work and go on family vacations whenever we wanted. I wish we could take off for the weekend and fly somewhere just to get away together...to visit my family back home in Wisconsin. I wish I could afford to go back to school and finish my education...get a degree...a job I love.

I sit here on my couch and look around at all that I have. I have insulin in my refrigerator, blood sugar test strips in my closet, an insulin pump attached to my daughters stomach. I have food in my cupboards....I HAVE cupboards! I have a roof over my head, clothes on my back, and a husband...daughter...and cat that love me more than anything else in the world. I have a few friends that support me...love me...and make me laugh. I am healthy and my family is healthy. I sit here typing this on my iPad....I have a freakin iPad.

I was chatting with friends today who actually have to fight with pharmacists and insurance and the government to get test strips for their child with diabetes. It's a struggle for them to be able to get the most basic necessities needed to manage this disease. While, I, on the other hand just waltz right into the pharmacy...tell them what I need, pay for it, and I'm on my merry way. I send the receipts in to insurance and I get ALL of the money back. I have never lived one single day as a D-Mom worrying about how or IF I was going to be able to get the supplies I need to keep my kid alive. I am naive in the struggles. I'm spoiled. I'm blessed. I'm greatful.

I sit here tonight realizing that I have way more than I need. I am far luckier than I even realize sometimes. I am blessed beyond belief. I have the tools needed to better help me keep my child alive every single day.

My life isn't perfect...but I don't think there is really such a thing, to be honest. My life is perfect for me at this particular moment in time. Whenever I find myself getting stuck in that vicious cycle of thinking about what I wish I had, I'm going to try to REALLY open my eyes and see all that I actually have already.

Monday, July 29, 2013

The In Between

So today was bloodwork day. For those of you not in the know, I have to take Emma every three months to get bloodwork done before her diabetes clinic appointment. They do some mystical magical tests on the blood they squeeze out of her finger and come up with something called an a1c result. It is the measurement of what her average blood sugar number was for the past three months. Ok, it's not really magical...but it is mystical to me because I've never really googled how the heck they do the test or what the process is of analyzing her blood. It's been explained to me once, in simple terms, but I can't recall how to explain it at the moment because I am running on four hours sleep...because my husband is a snorer...but that's beside the point...perhaps a tale for another day.

Anyhoo, I took her to the lab in the hospital and the technician lady that took her blood noticed all of the calluses on Emma's fingertips and all of the tiny holes from five years worth of needles being jabbed into them. She looked at my daughters face...looked at me with sadness in her eyes. It wasnt pity...just sadness...and she remarked how brave and strong Emma is to endure this everyday. It was a  moment I have witnessed quite a few times over the years honestly. I'm always left feeling a mixture of pride and sadness. Pride at the reality of it all...my daughter is brave...she is strong...she is remarkable in dealing with this disease day in and day out in the manner that she does. Sad at the reality of it all...sad that the tiny holes and calluses are even there...sad that they are noticeable and a daily reminder of the fact that she has to have needles jabbed into her tiny innocent so young and so strong fingertips every single day.

Once again, I'm left with a torn in two feeling about diabetes.

Something happened this evening though that made me feel whole. I took Emma to the park near our house after dinner to play. She brought her scooter along and rode ahead of me on the path. I saw her hair flying behind her and smiled...she's a kid...she was doing something every kid does...flying along on her scooter to the park. We decided to check out the skate park area and I asked her if she wanted to ride her scooter on it. She said that she was scared because she had never done it before, but wanted to check it out anyway. We sat down on the edge of the bowl and watched all of the teenage boys riding around doing tricks. Emma wanted to try it more than anything in the world at the moment but she was worried that she wouldn't be able to get back out of the bowl once she rode in. I told her, that if she wanted to try it, she should try it....don't worry about getting back out...I would help her if she needed help. No sooner did I say those words, and she was off and into the bowl...scootering around...laughing and proud of herself for not falling. I sat there on the edge of the bowl watching my daughter....riding her scooter over top of bright and colourful graffiti...a smile on her face brighter than the setting sun behind me. Her shadow riding along behind her. I saw the teenage boys looking over at her and smiling. I don't know what they were thinking...but in that moment I saw them look at her and appear surprised that this little 9 year old girl was riding in there all by herself...smiling...smiling at another kid having fun.

I saw my daughter having fun. She was being a kid. I felt whole and happy and complete and diabetes had absolutely nothing to do with the scene that was playing out before me. I was proud. Proud of her willingness to try something new. Proud of her ability to jump right in to the unknown without a second thought.

In that particular moment, I was just a proud mom enjoying a summer evening with my kid. The most beautiful things in life happen during those in between moments...those unplanned stops along the way...that's where the good stuff happens...that's where life is lived and true happiness is discovered...right in the middle of the in between.

Friday, July 26, 2013

Torn in two by independence

Independence is a double-edged sword for me as a D-Mom. Now that Emma's 9 years old, I know she wants more freedom in things...she wants to go play with friends more...at their houses. She wants to do all of the same things that kids her age want to do...and that's good. It's a good thing. It makes me happy! When I see her walking out the front door carrying her blood sugar meter, with fruit snacks stuffed into her pockets, and a smile on her face...it makes me happy and yet sad all at once. I try to not come across as pushy or overly nervous about her blood sugars...so I have her check before she leaves and tell me what it is, and I send her off with a kiss and reminder to check if she feels low...and a final yell out the front door to remember to watch for cars and look both ways before crossing the street. I take all of my nervousness and ball it up and throw it out there masked as a typical parent reminding their typical child to watch for cars....because I don't want her to know I'm worried that she won't check because she won't want to stop playing or she won't want to seem "different" and stop to check if she feels low. So, I make my single reminder and then mask all the leftover nerves in a "crossing the street warning." It's silly...and bizarre I guess...but it's what I do.

Emma will be in 4th grade this year and I'm a little nervous. She will be expected to be a little more independent this year...she's growing up...she's not one of the little kids in the school anymore. I trust her. I trust her way more than I did 5 years ago. It makes my heart pound with pride and joy when I see her bolusing herself and setting temp basals and finding carb info on food. It makes me feel good to know she is capable. It makes me feel like I have done a good job these past five years. It makes me feel like the plans I have laid out and the slow...very slow...but very effective process of teaching her how to manage HER disease has been working. It's like I can start to see the puzzle pieces connecting for her now. It's nice to see her feeling proud of herself for getting it too.

Diabetes sometimes makes me feel like I'm torn in two though, because all of those reasons I just listed for how it makes me feel proud and happy.....those very same reasons make me feel sad. She's only 9 years old. She never had a choice in the matter. This is her life and there's nothing she can do to make diabetes go away. It is what it is. It makes me sad sometimes to see her bolus, count carbs, set temp basals. It makes me sad to hear her talk about how swimming makes her high or the trampoline makes her low. It breaks my heart into a million pieces to see her sit on the deck and have to take a time out to drink juice with her friend because all the jumping around on the trampoline has made her crash. I hate it. I hate that it makes me sad. I should be able to just accept that independence is a good thing regardless and it's what I want for her more than anything else in this life....except maybe a cure of course...and to be happy and loved.

Half of my heart swells with pride and the other half is still in mourning I guess. My head says teach her...show her the way...give her the knowledge and the confidence and the ability! My head says knowledge is power and you are setting her up for success in reaching that life of independence by leading her down this path and letting go a bit.

....but my heart....oh, my heart cries...my heart sobs uncontrollably sometimes for the loss and the pain of having to unload this all on her shoulders some day.

So, that's where I stand at this moment in my life....torn in two. I hope one day soon I can feel whole again and find a way to put those two pieces of myself back together again.

She will be fine

Emma interviewed an incredible woman today for her D-Girl Power magazine. She has been living with type 1 diabetes for quite a few years now and Emma wanted to get her perspective on growing up with it.

As a Mom, it's always a beautiful thing to be able to see my kid speaking with others who are just like her. It's like they belong to a special club that I could never fully understand. Sure, I get it a bit because I am a D-Mom...but I don't get it like they do...I don't know what it's like really. They have an instant bond that I will never completely understand...but I adore it...I adore the fact that my child has such amazing role models like this woman who are there for her to look up to, talk to, ask for advice, or simply be in their company and get that comfort of total and complete understanding.  I sat there on her bedroom floor watching her at one point...holding onto her list of questions...laptop in front of her...so grown up looking, and yet still my baby girl. Sometimes I have to remind myself that she's only 9 years old. I forget because diabetes has matured her...it forced her to grow up ahead of time and really see things differently than other kids her age. One of the questions Emma likes to ask people is what advice they would give to girls growing up with type 1. I think it's important to her to know because she is one of those girls growing up with it...she is seeking out advice from these women who have been where she's at now...they've been through it all and then some...they have stories to tell and experience in this life. I think it's comforting to her as well to see that they did well...they grew up into amazing women who are making a difference in this world.

When Emma asked for the advice, and our new friend responded...I was floored at her reply. Her words...her response...it was one of the best things I have ever heard in the last five years. She said, "the ONLY thing you can't do is make insulin...everything else is GAME ON!" I felt my mouth open and the smile spread across my face. I looked at Emma and saw that it hit her just as hard too. We both laughed and said, "ahhh YES! I love that!" It's simple...to the point...and completely 100% accurate.

We aren't always going to succeed at everything we try. We aren't always going to win. We aren't always going to get it right. But as long as we are trying and giving it our best effort and persevering and seeing things through to the end...no matter what the outcome...we are winning. We can hear the words "no....you can't do that...you'll never succeed...it will never work...it's too hard..." over and over and over again in our lives. It happens every single day. We can choose to either believe those words and those people saying them. We can choose to let those words stand as roadblocks on our journey...stopping us...keeping us down...making us not believe in ourselves...........OR we can keep going. We can choose to keep going and keep trying and keep pushing and keep asking and keep seeking out our purpose and how we can use it to help others. We can choose to knock down those roadblock words and really truly honestly believe in ourselves.

So, when I saw Emma's reaction to that piece of advice, my heart pounded with happiness and pride because I know she is made of something special. I know that she believes that. I know she believes in herself and she's not afraid to try.

As a Mom, that gives me comfort in knowing that she is going to be just fine regardless of what life throws her way....she will be just fine.

Wednesday, July 24, 2013

That Moment

That moment
That moment when you let out the breath that you didn't even realize you were holding in
Or how long you've been holding it
And you see the world a little clearer
A little bigger
You're a little less caged by the numbers
And a little more free to roam the unknown.
When you start to taste the freedom
Ironically sweet
Like a cool glass of water on a sunny afternoon.
When you begin to notice the beauty around you
And the skies that take your breath away
In an instant
The brilliant blues and purples and pinks
The fiery oranges and reds and yellows
Painted on the worlds canvas
Just for you.

That moment when you see the negativity for what it really is
Poison
Poison that can flow through into every aspect of your life
Poison that can leave you crawling on your knees
Gasping for air
Lost
Lost in a never-ending circle of darkness
Maddening
Frightening
Infinite in the extent of it's powerful cries.
Cries that slice through the silence of your heart
Echoing across the chaos in your mind.

That moment when you decide to open your eyes
And live
Live with strength
Hope
Confidence.

Monday, July 22, 2013

Emma's post!!

Hi, my name is Emma and I'm 9 years old. I've had type 1 diabetes for 5 years now. I like gymnastics, reading...especially Geronimo Stilton books, and bacon. I have a cat named Daisy that's really fat and she is hilarious. Her full name is actually Daisy Elizabeth May Hooscout Lady Marmalade Azriel Emma Ermel. I know it's long...but I like it that way.

One thing I hate about having diabetes is the needles...I mean, sheesh! Nobody likes having to get that many needles, am I right?! Sometimes i also hate how some kids at school act towards me about it. One time when I was in first grade, there was a boy who saw my insulin pump right after I started wearing it and he told me that he wanted to smash it into my stomach! He's a bully though and I don't like him at all. I don't let it get me down though, because I know it's HIS problem...not mine. Some kids really need to learn the whole "if you don't have anything nice to say, then don't say anything at all" thing!

One thing I like about having diabetes is when I get to have candy to fix my low blood sugars. I like candy....especially peanut butter cups...they are my favorite! I also like getting to meet some really cool peeps who also have diabetes. I even got to meet an American Ninja Warrior at the Children With Diabetes Friends for Life conference in Toronto...his name is Kyle Cochran and he is AWESOME!

I am making a magazine called D-Girl Power right now too. It's fun to do and I want to have a cool magazine for girls like me to be able to read and hear stories about how awesome we all are! Girls can do anything we want to as long as we try our best!

The last thing I want to say is don't ever let diabetes stop you from doing something!

Friday, July 19, 2013

My advice...don't lose yourself

I think as parents...a lot of the time...we get caught up in our kids lives. We focus the majority of our time and energy on them. I'm not saying that's a bad thing...in fact I think it's the exact opposite...I think it's a good thing. We are raising little human beings that will one day take on the world and hopefully make it a better place. Spending our time and energy on them and with them is important and definitely a good thing.

As D-parents, I think it's magnified to a certain degree. We get so wrapped up in chasing that elusive perfect blood sugar. We conquer the impossible every single day. We raise our child's blood sugar meter in our hands and battle that ice cream cone...that birthday party...that afternoon of swimming. We raise our child's pen needles or pumps or syringes and we knock down every obstacle that life throws our way that seems to affect their diabetes and their blood sugar numbers. Their health and well being is of utmost importance to us...as it should be.

That being said, I think many of us lose ourselves along the way. We forget who we are sometimes. We have these labels attached to us...mom...dad...our child's pancreas. These labels carry a lot of weight to them and sometimes who we are deep down inside...beneath the layers we have created to take on this fight...is lost...it's crushed beneath the weight of it all.

It's hard to remember to take time for ourselves. Whenever people ask me what the one thing is that I would tell a newly diagnosed parent, I always say the same thing. Take time for yourself. Take time to remember who you are....who you REALLY are....deep down inside...not Mom...not D-Mom...not nurse or dietician or doctor or teacher or advocate or psuedo pancreas. Take time to be you....just YOU....even if it's only for 5 minutes out of the day. If we lose sight of who we are and who we were before this all began...before diabetes was thrust upon us...then we are setting ourselves up for sadness.

I took time for me today. Emma was swimming all afternoon at two different friends houses. At the first house, I sat on the deck and drank some beer and talked with her friends mom and grandmother. We talked about anything and everything. We laughed. We drank. We watched the kids have fun in the pool. I didn't think about being a Mom or a D-Mom....I was just Amy. Sure, I checked blood sugars and bolused for popsicles. Sure, I asked her if she felt low and did my typical psuedo pancreatic duties.....but I didn't think about it....I just thought about being Amy and having a few beers with some good friends on a hot summer afternoon. It was nice. It's nice to slip back into that old familiar space of......me. The weight of the labels was gone and it was just....easy. Emma had fun with her friends....I had fun with mine....and she walked out of there with a perfect 5.2 blood sugar.

Don't forget to be you everyday. Don't lose yourself. Don't let diabetes take that part of you away... you are amazing now BECAUSE you were amazing back then too. You are still in there. Take time to let the weight of those labels fall from your shoulders....and just...be....you.

Tuesday, July 16, 2013

Book review and a Great Escape

So, I'm not sure if you are aware of this...but there are some incredibly talented people in the diabetes community. Over the years, I have had the privilege of getting to know quite a few of them...painters, artists, writers, musicians, singers, dancers, athletes, and even an amazing quilt maker. I think it's pretty astounding really...the fact that these people do all that they do with managing diabetes, and yet they still are able to let their light shine out through their talents. Some seek solace in creating. Some will wake up at the crack of dawn on a Sunday morning...even though they were up every two hours the night before fighting low blood sugars....just so they can slip out of the house for a moment and capture that breathtaking snapshot of the sunrising over the mountain tops. Some have the ability to put words together so eloquently that you almost feel like you are in the moment with them...you hear the sounds they describe...you smell the smells...you see the world through their eyes. Their words are like a beautiful painting that you are connected to somehow. It's a stress relief for some of us. We get swept away in whatever outlet we are drawn to and nothing else matters...not blood sugar checks...not insulin injections....nothing. We get lost in the moment and all of our energy is focused on creating something beautiful...something that comes from our hearts...something that is an expression....an extension...of ourselves and our inner most thoughts.

I had the opportunity to read the first book in a series that was written by an extremely talented D-Mom named Holly Patrone. She lives in Long Island and has five children...one of which happens to have type 1 diabetes. Oddly enough, "Death is a Relative Thing" has nothing to do with diabetes...there's not even a character in it with type 1. I kind of like that actually...the fact that Holly's creative outlet had nothing to do with diabetes. Her story is about a middle aged Italian American woman named April Serao. She lives in New York with her three sons. Six years ago April's husband died while they were having sex and she finds herself trying to make it on her own again while raising her sons. One day her mother convinces...er...guilt trips her into going to see a local celebrity psychic who informs April that her husband Sal will talk to her again from the other side. Sal takes it a step further actually and begins to appear at the most awkward times to speak to April. Holly's story takes us on a journey with April...full of laughs, a few oddball characters that April works with and meets along the way, and even a new chance at love.

I found Holly's story a lighthearted read. Usually the only time I was able to find to sit down and read it was late at night when I was waiting to check blood sugars, and many times I would have a hard time putting the book down...I would laugh right out loud at points and my cat would sit there staring at me like I had lost my mind.

Getting lost in a good book is a great escape from all of life's stresses. It was nice to escape for a while into April's world and I think you all would enjoy it as well. Looking forward to ordering a copy of the second book in the series now!

Embrace your creativity...in any and all forms. Seek out that which makes you feel more.....you.....and less about being a d-mom or d-dad or person with diabetes. Creativity is a beautiful thing and I am greatful to know so many creative and inspiring people.

Sunday, July 14, 2013

Lets choose the harder path

It's easy to get caught up in the sadness...the anger...the depressing realities that we face everyday. It's easy to get sucked in to that madness and find yourself caught up in a vicious cycle of swirling thoughts that leave you feeling like you are drowning in a pool of muddy despair. It's easy to just let those thoughts take over and ruin the moment of the day. It's easy to curl up under a blanket and pull it up over your head trying to hide from the unfairness of it all and the inner battle of not having the life you want or the life you always dreamed of. It's easy to get to that point. It's far too easy...in fact, it's kind of scary how easy it is sometimes.

It's much harder to stand up to yourself and fight those demons trying to bring you down. It's much harder to choose happiness sometimes. It's much harder to see the light...to see the positive...to see the things that go right...to see what blessings we really have. It's much harder to keep our sights set on the horizon and really convince ourselves that it's good...it's ok...we are doing just fine. It's much harder to stay in that place...stay in the light.

Diabetes can suck the life right out of you. It can sometimes make you feel like you are drowning. It can bring out feelings in you that you never knew you were capable of having. Jealousy, fear, melancholy, hatred, depression. We spend our days living in such extreme conditions sometimes, that every emotion is that much more heightened...that much more intense.

The way I see it though, is if we are strong enough to fight this disease every single day....then we should have the confidence in our abilities to choose the harder path and seek out peace and happiness. It's not easy...but we are so much stronger than we give ourselves credit for. We are so much stronger than we know.

*i wrote this for me tonight...because I was feeling myself stumbling over onto the easy path of sadness and unfairness. But I thought, maybe I should share it...in case someone else out there was feeling the same way tonight. We can do it...we can choose the harder path...I will walk beside you and hold your hand every step of the way if you will hold mine too. We are strong. We can handle it together, I promise.

Friday, July 12, 2013

Just let her cry

So the other day I took Emma to the community pool for a swim and to play at the park afterwards. I'm convinced that my girl was a monkey in a past life because she is drawn to the monkey bars...actually, no matter where we are or what we are doing, she will climb on things...hang from them...swing around. It's all fine and good at an actual park or at gymnastics class...but when we are at Walmart and she decides to swing from the cart and take a flying leap for the clothing racks or the handles on the frozen food doors, well...not so good.

In any case, we were at the park the other day and she was swinging away like usual and I was replying to a text my husband had sent me...kind of half paying attention to what she was doing. She's  9 now, so I'm not usually as concerned about her hurting herself like I was when she was younger. Well, I sent the text and turned around to see where she was and I was met with her gripping her hand in pain...tears silently streaming down her face...total grimace of agony. I rushed over and pulled her to me in a hug and asked what happened...what was wrong...why was she crying? In between sobs, she explained that she had ripped open two calluses on her palm while swinging on the bars. I remember that pain vividly. I did gymnastics my entire childhood and the uneven bars were my favorite event, so I was constantly getting rips on my hands. It's not pleasant...it stings and makes it hard to think about anything else but the searing pain in your hand in that moment.

My heart hurt to see her in so much pain. I gathed up our belongings and we headed home...she cried the entire way in the back seat. It occurred to me that I have been so conditioned by diabetes to constantly try to make things better...skip over the tears and the pain...because we have to get done what we have to get done. For the past five years, I have jabbed countless needles in her little body...I'm sure they all have caused some level of pain...and she used to cry a whole lot in the beginning. She used to cry and it would break my heart...because I didn't have a choice in what I was doing...I had to inflict this pain on her if I wanted her to live. So, I made jokes...I said silly things...I tried to distract her to stop the tears. I tried to do whatever it took to make that look of agony leave her face because it broke my heart and as her Mom, I just couldn't handle seeing that pain in her eyes and know that I was the one causing it. Diabetes has conditioned me to be this way over the years...and I hate it. I wish I could be one of those Mom's who rushes over to their crying child and scoops them up in their arms and kisses the injury and puts a bandaid on it and makes it all better. I wish my first gut reaction wasnt to make jokes or rush home to fix it or try to think of a way to make the tears stop. I guess I am fixing it and making it better in my own way...but I just feel sometimes like diabetes has ruined that part for me. It's hardened me to an extent I think. It's hardened me to the tears and the pain. Yes, I do hug her and kiss her and comfort her....but it's different...it's like I focus solely on making the tears stop and getting her to smile again...instead of letting her just cry...because she needs to cry...she deserves to cry because it hurts like hell.

I am going to make a conscious effort to let her be a kid more in the moment...and let her cry and be comforted when she needs to be. I'm going to try to stop just focusing on stopping the tears and making her laugh. I'm going to focus on the moment and let her cry when she needs to...because crying is not a bad thing and it should not be rushed along.

Just another epiphany at the park.

Monday, July 8, 2013

Nice

At the end of the day, it's really about whether or not you are a nice person. I don't mean one of those people that gives you the token nod on the street...I'm talking about a truly nice person...kind...way deep down in your heart.

It's about what you've learned today. Be it learning how to tie your shoes, checking the oil in your car, or figuring out how to change the site on your child's insulin pump. If you stop trying to just make it through the day, and instead focus on what possibilities are hiding in each tick of the clock, it could be so much better.

I am not a fan of the preachy posts that try to cram happiness down your throat and show you the ways of the force when it comes to being a Jedi of joy. I think a lot of times they leave me feeling like I just swallowed a big gulp of over sugared grape koolaid...and like unless I follow those 15 rules, I am some sort of failure.

So, I make it a point to try...everyday...try to be a nice person. I try to show my daughter that she needs to be a nice person. I try to learn something everyday...better myself...open my mind to the world around me. I try to see the beauty in things. I look up and stare at the sky...I see the breathtaking colours in the sunsets and the uniqueness of every fluffy white cloud. I take pictures of my cat...because she makes me smile. I take pictures of my kid...because she makes me smile. I sing in public places...sometimes I even dance...I laugh out loud and don't bother trying to hide it...because I don't care if I look silly. I don't care if people think I'm weird or immature or ridiculous. I don't care if they think I'm a bad example for my daughter. I am who I am. I know if there is one thing I am good at in this life...it's being a Mom....being Emma's Mom.

Living with diabetes in your house makes it hard to be a nice person sometimes. I have days where I hate the numbers that show up on her blood sugar meter so much...that I don't even want to speak...because I'm afraid that the words that will fall out of my mouth will be poisonous. Realizing though that diabetes only has the ability to steal your happiness if you let it...well...that's when the real stuff happens. If you can see that you really are the one in control of your day, then it's easier to smile.

I have spent far too many days in the past five years just trying to make it through each day...just trying to make it to the next number...to the next bolus...the next meal...the next middle of the night check. Life shouldn't be about just making it through. Life shouldn't be all about diabetes. Life shouldn't be about setting yourself up for failure every single day and holding yourself responsible for the ugly moments. Shit happens....and when diabetes is in the mix, even more shit happens. We can't let it run our lives or rule our thoughts. We can't let it take over every aspect of our day and give it power over our hearts. Yes, it sucks. Yes, it's unbelievably hard to manage. We don't deserve to have this on our plate. It's not fair. It's not right. But it is what it is...and I have given so much and allowed diabetes to take so much from us....that I now know, it's not selfish and it's not irrational to want to keep something for myself. It's ok for me to allow myself to be happy. It's ok to allow myself not to think about diabetes all the time. If that makes me a Jedi of joy, well..then I guess I better dust of my lightsaber.


Saturday, July 6, 2013

Guilty Pleasures

Today was far from a good diabetes day. It's gotten to the point where I'm starting to question whether or not someone has snuck in and somehow switched out the insulin in her pump with water...just to have a little laugh at my expense. Perhaps I'm being filmed on one of those stupid reality practical joke TV shows. Maybe Tom Bergeron or Ashton Kutcher will jump out from behind the chair and fill me in soon. It is what it is though...and I tried my best.

I don't want to talk about diabetes in this post though...I want to talk about something much different...something a little embarrassing...something I don't freely admit to many. While I was sitting on the couch tonight...pouting and having a little pity party about the shit show that was this day....I turned on the TV and there was Jennifer Lopez and Matthew Mc-what's his name in "The Wedding Planner." My guilty pleasure is romantic comedies...especially those starring Jennifer Lopez and/or Matthew Mc-what's his name. I love them. They are easy to watch....simple movies that don't require a whole lot of thought to follow...movies where you could leave the room for a minute to go make yourself a tea and come back and still be able to follow the storyline. There are crazy antics and sometimes ridiculous acting...but by the end of the movie, you always know that everything will work out...they will find love together and ride off into the sunset on the back of a Moped..

Guilty pleasures are sometimes the only things that help me make it through an awful day with diabetes. Be it romantic comedies....listening to Adam Lambert's "Whataya Want From Me?"...eating chocolate syrup straight from the bottle....or even sometimes taking out Emma's box of 64 crayons and colouring a picture in her Littlest Pet Shop colouring book. These things all might seem silly or weird to some....but some days they are all that I've got...some days they are the only thing that will silence the screaming loud unfair numbers bouncing around in my head. Some days, these things are all I have to distract myself from the reality that has been in my face all day long.

Guilty pleasures are a good thing. What guilty pleasures do you have?

Thursday, July 4, 2013

I am not an expert

I am by no means an expert on type 1 diabetes. I may have been playing the role of my daughters pancreas for five years now, but that doesn't mean I know what I'm doing all the time. It doesn't mean that I have it "under control." It doesn't mean that I have all the answers and it doesn't mean that I have somehow become a pancreas whisperer. Sure, I know some....I know a lot, really. But with this disease, I don't think it's possible to know all there is to know. There are too many variables...too many different situations and circumstances that can play a role in how things are affected...that it's just not feasible to expect things to turn out how you want them to every single time. Yes, I know the basics. I know how to bolus and change basals and change her pump site. I know how to count carbs and I know how certain foods and certain activities and certain situations will affect my own daughters blood sugars. I am far from an expert though. I make mistakes. I make a lot of mistakes.

If there was one thing that I could tell a newly diagnosed parent, it would be that you have to be able to accept the fact that you will make mistakes. You have to teach yourself to be ok with that fact. You have to realize that you are not a pancreas. While you do love your child more than anything else on this planet, you are still not a pancreas....and you never will be....no matter how hard you try or how badly you want it to be. It took me a long time to be ok with screwing up. It took me a lot of thinking and a lot of soul searching to accept the fact that mistakes are a good thing.

Making mistakes is the only way we will learn. It's the only way we will find out how certain things affect our children. Mistakes are a good thing. I know it's hard for you to see that now....and that's ok...like I said, it took me a long time to get there. Instead of spending your time and energy and emotions on trying to decipher one specific number or one specific day or one specific pattern or food or experience, try to see it as a moment of learning. If you can take that less than stellar number and treat it and turn the page, so to speak....it will save you in the end. It will save your sanity.

Even though my daughter is using an insulin pump now, I still record her blood sugar numbers in a little notebook. It's helpful to me. It makes me feel more in control. I like being able to see the numbers right there day by day in front of me. I like being able to see the trends and the patterns and keep my little notes about pizza days and gymnastics days and sick days and birthday parties. I like being able to flip through the pages and see it right there.

Today I started a new notebook because I had reached the last page in our old book last night. I flipped through and saw that we had begun that book back in December. As I held onto that little pink notebook, I felt a sense of pride and a sense of accomplishment. I saw all of those pages filled with notes and numbers and days gone by...for nearly seven months...and it made me feel good. I was holding roughly 210 days of numbers in my hands. I closed the book and set it aside. I opened a new one...a new page...a new day....and I realized that my little notebooks are like a metaphor for diabetes itself. Some days the numbers aren't so good....some days they are incredibly perfect....but hidden between the lines of that notebook are moments of mistakes, moments of tears, moments of victory. Every single page of that notebook represents another day of me doing the best I can possibly do at my job...being my daughters pancreas.

One day, I will sit down and look through my collection of notebooks and smile at all of the years of mistakes...all the days in there that lead me to the day a cure is found. Maybe I will tear them up and throw them away...or maybe I will burn the pages one by one...or maybe I will keep them...forever...as a reminder to myself of just how sweet a victory is when the pathway there is filled with mistakes and hard work.

Tuesday, July 2, 2013

I would show you her eyes

If I could choose only one thing to make you see what it's like...
I would show you her eyes
Her big brown ageless eyes
I would show you the flecks of gold that shine like the sun upon the sands of the silent desert
Warm and soothing
Filled with the echoes of a thousand moments beneath the shadows of the moon
Ticking away
silently blowing across the open horizon.

Moments of pain
Moments that make your heart feel like it is being crushed in the grip of a giant's fist
Squeezing the air from your lungs
The light from your smile
The peace from your mind.

Moments of pride
Moments that make your whole body tingle
Each hair on your head
Each beat of your heart
Blink of your eye
Each smile that escapes your lips
Thrumming with the buzz of victory
Joy
Success

If I could choose only one thing to make you see what it's like
How it feels
How it's lived
And breathed
And won?

I would show you her eyes...
Her eyes hold the world
Beneath a blanket of hope
And love.