For those who try to "help"

If you knew what it was like, you wouldn't say the things you say. You wouldn't talk about cures that are out there and make it seem like the rest of us are fools for not having tried them or known about them already. If you knew what it was like, you would not speak of magic juices and hemp....raw food diets or carb free diets...moss that grows in far off places and the glorious cinnamon. If you knew what it was like, you would realize that none of these things will make a pancreas magically and miraculously begin to produce insulin on its own again. If you knew what it was like, you wouldn't refer to insulin as "medicine" or speak about ways to be able to give her less insulin...as if it's a bad thing...a thing that shouldn't be given in the first place. If you knew what it was like, you wouldn't post these things online for all to see...especially those new to this D life...those that are the most vulnerable...the most impressionable...the most naive. You wouldn't try to convince them that if only they were to follow your advice, that their child would be healed...saved....cured.

However, I know that you don't know what it's like. I know that you might mean well with your advice and your suggestions. I know that you believe you are only trying to help. I know that it might make you sad or sympathetic to what we endure on a daily basis. I know that our posts of highs and lows and struggles might make you uncomfortable...or upset. I know that you truly believe in your heart that you are helping us fix the situation or make our lives easier. I know that some of you are out for making a buck. Some of you are reaching for that almighty dollar and you don't care who you step over on the way. I know that some of you prey on the naive...the new...the easily influenced...because you know that it is a sure thing and it will be a piece of cake to take advantage of them. I know that some of you are just off the wall....and that's ok too....we are all a little off the wall in our own way.

I know these things because we are almost five years into this life with D. I know there is no cure. I know that none of the things that you speak of are true. I know that I could feed my daughter nothing but cinnamon for the rest of her life...and she would still have type 1 diabetes. I know that I could pour your magic juice down her throat...and the only thing that would happen is her blood sugar would rise unless I gave her insulin to cover it.....because there is sugar in juice...all juice...even your magic juice. I know that when I inject or bolus my daughter with insulin, I am merely doing the job for her pancreas...I am replacing what her body SHOULD be able to do on it's own...but no longer can. I know that no matter if I have to inject or bolus her with .05 of a unit or 5.0 units of insulin....it's not going to harm her or be better or worse for her body....I am simply putting insulin into her body because that is the amount she needs to help her system digest the food she just ate...and it is the same amount of insulin her pancreas would produce on it's own if it still could.

I know these things because I have years of experience under my belt. I'm not new. I'm not naive. I'm not vulnerable or easily influenced. I have seen the highest of highs and the lowest of lows when it comes to this life. I have experienced nightmares that I can not awaken from...because they are our reality. I have seen incredible and honest miracles as well. REAL miracles...miracles like seeing my child accomplish her goals, dreams, and desires. I have seen her reach beyond the stars and never let anything stand in her way. I have seen her do these things WITH diabetes. I have seen miracles in her eyes.

So, please...before you decide to share your discoveries...your cures...your solutions to our "problems", pause for a second...take a deep breath...and think about it first. Think about if it will truly be beneficial. Remember that if there was a solution to our "problems"....we, as parents, probably would have already tried it by now...or at the very least, researched it to the extreme...probably late at night while we are waiting to check our child's blood sugar. Remember that we love our kids more than any one else on the planet...and if there was a cure or a solution...we would be all over it. None of us like sticking needles in our kids...so if it was as simple as only feeding them raw carrots, don't you think we would have done it by now?

Thanks for listening. Thanks for trying to help. Thanks for caring. My suggestion for the future if you are still wanting to help though...is to just give us a hug, tell us we are doing a kickass job, offer to learn how to take care of our child's diabetes and actually do it, offer to watch our child for a couple hours after you have learned...jus so we can have a nap, or even just listen....just listen to our struggles and be a shoulder to lean on when we need it most.

Forgot about D

I remember being fairly new to this D life and wondering if the day would ever come where I wouldn't be worried all the time...or thinking about it all the time. I actually asked a 40+ year veteran of D if that day comes....and when. They told me that it would happen...the day would come where it would just be routine. The day would come where checking blood sugars, giving insulin, counting carbs would all become such a normal thing that I wouldn't even really be thinking about what I was doing...I would just do it. I remember shaking my head in disbelief when they told me that the day would come where I would find myself NOT even thinking about diabetes at all. They said it would happen and I would catch myself and be stunned that I actually....forgot?.....about it.

I know we don't ever truly forget about diabetes. I know that the reminders are there in nearly everything we do...be it food or activity or the numbers. We can't get away from it ever...no matter how hard we try. I'm assuming that even when Emma is grown, I still won't be able to get away from it because I will be worrying about her and wondering what she's doing and if she's ok and if diabetes is being fair. I have to admit though......

it has happened...

I have forgotten about diabetes. I have had moments of time pass where diabetes was not in my head. It was bliss....peaceful, happy, quiet....bliss.

One of those moments occurred this weekend. For whatever reason, the weather really seems to play a big part in how Emma's blood sugars behave. This weekend we had beautiful weather....sunny...warm...like the perfect start to summer type of weather. Her readings have been perfect. I realize now that I have typed that statement out, I probably jinxed things and she will have horrible numbers tomorrow...but alas...that's the way it goes sometimes. Anyway, her numbers have been perfect. Every single one. All of them have been in perfect range. She has eaten foods that I had to guess the carb count on. She has had a lot of activity....A LOT of activity. I have given foods and juice to her without bolusing and set temp basals on her pump ahead of time to avoid any potential lows. I've gotten them all right. It's like I'm in a zone....a pancreating zone....I've found my groove...the stars have aligned....and everything has worked out perfectly.

So, for a moment yesterday....and a moment today....I forgot. I sat there on my deck watching her play with a friend....blowing bubbles and playing hopscotch......and I forgot.

I smiled as I remembered years ago when that 40+ year veteran assured me that the day would come. I smiled and marvelled at how far we have actually come in this life. So, this post is for you specifically, newly diagnosed D-Mom or D-Dad. The day will come. I promise you. I know you are probably sitting there shaking your head in disbelief just as I did. I know you won't truly believe me until it actually happens to you too...but I hope that you can read this and take away a little nugget of peace in your heart...and know that the chance...the possibility...it's there.

Two Years of Pumping

Two years ago this night, I was freaking out. Two years ago this night, I was panicking. Two years ago this night, I was certain that it was entirely possible to actually be scared to death.

Two years ago this night was the last night Emma had before starting to receive her insulin through an insulin pump. I barely slept that night. I knew in my heart that we had made the right decision to begin pumping, but I was terrified anyway. I knew that her blood sugar levels would improve. I knew that it would give her more freedom. I knew that it was a good thing. All of these things that I knew though...did absolutely nothing to help calm my pounding heart.

I was afraid. I was putting all of my faith in this little pink device that runs on one single AA battery. I was forcing myself to leave my comfort zone of injections....where I had been for about 3 years. I felt like I was closing my eyes and taking a leap off the edge of my reality....where I would land, I had no idea. Would I be able to do it? Would I screw up and somehow give her too much insulin and kill her? Would I insert the infusion set incorrectly and cause the insulin to not be able to flow into her body and wind up killing her? How was I going to be able to do this?

...and here we are two years later...

Life with an insulin pump is not easy by any means. It's not a magical device that acts as her pancreas for her. It doesn't automatically know how much insulin she needs or know how to keep her alive on its own. It is not her pancreas....it doesn't compare to the real deal. Nothing could compare to the real deal.

We have had many ups and downs these past two years. The first time I inserted an infusion site into her belly on my own at home, I was terrified...my hands were shaking...I was sweating...stuttering...stammering...laughing like an idiot over the smallest things because I was so nervous. I put the DVD Animas sent us with her insulin pump in and pressed play. I followed along with the how to insert an infusion site section...step by step with the man on my TV screen I would watch a step...pause the DVD...do the step on Emma...press play...watch the next step on the DVD...pause...and do it on Emma. It took me about half an hour to get it done...but I did it...and she was fine...and I was proud of us....proud of myself. I proved it to myself that yes...I could in fact do what needed to be done to keep my child alive every day.

I managed one time to insert the site into her thigh muscle instead of the soft tissue next to it. The tiny plastic canula that goes into her body hit the muscle and bent at a 90 degree angle....causing the insulin to not be able to flow through into her body. I did not know this occurred because I can't see inside of her body. I didn't know she wasnt getting any insulin until about 3 hours later when I checked her blood sugar and the meter simply and horrifyingly said "HI"....which means her blood sugar was so high that it wouldn't register on the meter. That was a definite low point. In fact it was one of the scariest moments of my life. Emma would switch from hysterical crying...to hysterical laughter and back again in a matter of minutes...all because of her blood sugar.

We have gone on two nine hour road trips to the US. She has gone to at least 100 two hour long gymnastics classes while wearing her pump. She has had two birthday parties...two Christmases....two Easters...two Halloweens....all while wearing the pump. She has educated her peers about it. She has educated her teachers and school staff about it. She has had numerous fundraisers...came up with the idea for wanting a diabetic doll like Barbie....all because of her pump. She has spoken with other children who were afraid of the pump..but still wanted to get one too. She has comforted them...reassured them...made them see that it's not so scary. She has met some incredible people along the way.

Her Animas Ping insulin pump has made our lives about as close to how they were before diagnosis as we can possibly get. It has given us freedom...allowed her to regain more of her childhood...allowed her to just be a kid. We have gained a whole new family in our support system at Animas. We aren't just a number to them. We aren't just another customer. We are family....for life.

 So, I dedicate this post to you, Jumanji (that's what Emma calls her pump). Thank you for being by my side over these past two years. Thank you for being my greatest tool in this fight. Thank you for all the joy you have given her. I love you and I would be lost without you. Thank you.

Amazing talks

I had the most amazing talk with Emma tonight. It kind of came out of nowhere, as most all amazing talks seem to happen. We were laying in her bed together watching a movie about gymnastics. Emma loves gymnastics...she's been taking lessons since she was 2 years old.

She started to explain to me how she is upset with herself because she has been trying to learn how to do front walkovers and just can't quite seem to get it. As the tears started to fall, she said that its hard for her because she is afraid of falling and hurting herself. I could see the frustration in her eyes and my heart ached for her. It's difficult to see your kid feeling defeated...feeling like they aren't good enough.

I hugged her and wiped away the tears and explained to her that she shouldn't let her fears stop her from doing anything. I told her that she needs to keep practicing...keep trying...taking all of the fears she feels and turning them into motivation to make it happen. I told her that when she feels scared to try something, to take a minute and think about all of the things she has done in her life so far...all of the needles she has endured...all of the pain...all of the highs and lows...all of the fears that diabetes has brought her way......and remember what she has accomplished in spite of it all. I reminded her of the fundraisers she has come up with...the people she has gotten the opportunity to meet because of diabetes. I told her that she can't give in to these fears...she can't let them dictate what she does in her life...because if she does, her life won't be as much fun. We can't live our lives being afraid. We cant give up that power and that control to something like fear. We can't reach our goals with that added weight of fear upon our shoulders. We need to take a deep breath...grab ahold of that fear...and run with it. We need to turn it into the very thing which keeps us going.

I am incredibly greatful that I was able to use two very special people we have met as examples of people who have stared fear in the eye and reached for the stars anyway. Ironically enough, they are both type 1 diabetic. Funny how that works, isn't it? Two of the most fear defying people I know...just so happen to have type 1 diabetes too.
I saw the fear wash away from her eyes as I explained their stories to her. I saw the comfort take over. I saw the inspiring motivation settle behind her tear filled eyes. I saw it. I saw the feeling of recognition and sameness and bravery take over where the fear had just been moments before. I saw it with my own two eyes.

I told her that I believe in her. I believe in her even when she doesn't believe in herself. I will help her practice. I will stand by her side. I will be there...no matter what. I told her that she can do it. I told her that I know she will do it. She is stronger than she sometimes believes...braver than she even realizes...more capable than she knows of doing whatever her heart desires.

The conversation ended as always with a hug and a plan of action for helping her reach her goal....this time in the form of a post it note on the table to remind us to practice every day after school.

I walked downstairs and happened to glance out the window. I saw the most breathtaking sky. Purples and pinks and yellows...the sun was setting on this day....and it looked as if the sky was on fire. It was gorgeous. I stood there for a minute and smiled....realizing that I am incredibly lucky. I am surrounded by beauty....the world around me...and the world within my heart. Today was a good day.

What might have been

I sometimes wonder what my life would be like had diabetes not shown up uninvited. It use to make me sad to think about a life that we could have had....a life that was never to be written.

I got 4 years as a regular old Mom. Four years of giving her sips of my juice...bites of my food. Four years of opening the pantry door and asking her what she wanted for a snack...without a carb count or insulin ratio thought in my head. Four years of watching her run and play and be a kid. I got 4 years of sleeping peacefully at night....ok...more like 2 1/2 years of peaceful sleeping...Emma was not a good sleeper as a baby or toddler...but in any case...I got a good solid 2 years of worry free sleep every night.

Looking back on it now, I realize how blissfully unaware I was and how much I took for granted. Emma was my first child...my only child. I realize that I am starting to forget what it was like on a day to day basis. The memories I have of being her Mom during those first 4 years are like a whisper of what once was. It's sort of like looking through a window in the middle of winter...taking a deep breath and as the window in front of you fogs over when you exhale....you still try to see through...you wipe away the fog...leaving behind streaks in the shape of your fingers...but yet you still try to look through. My original life...my days as a regular Mom are outside that window. It's blurred and fogged over...but I still see it. I still see that version of myself. I miss her sometimes.

I wonder how my life as a Mom would have played out had the events that occurred on June 26, 2008 been different. What if the doctor had walked into the room and said, "oh it's just a bladder infection...here is a prescription for an antibiotic...she should be feeling right as rain in a couple of days." instead of saying the dreaded D word? What if we had been able to walk out of the hospital that morning...hand in hand...gotten into the car...and driven away back into our regular old life? Would I be happy? Would she have been happy? Would she still be the same kid she is today? Would I have gone back to work when she started kindergarten? Would she still have ended up being as independent and strong willed as she is? Would I? Would I be more emotional and cry more over silly little things? Would I be as compassionate? Would I still have this overwhelming urge to help people? Or would I have been so wrapped up in my own life...my job...my friends...to even cast a second glance?

I don't know. I don't know how we would have ended up. I don't know what our lives would have been like. I will never know because the doctor didn't send us on our way that day....he didn't give me a prescription....he said the words type 1 diabetes...and our lives were never to be the same.

Sometimes when I feel the need to daydream about what might have been and I wipe away the fog from that window, it makes me realize that despite all the pain diabetes has caused on this side of the window....I like our life...I like it because it's REAL...and it's strong...and it's ours.

Plus size models

As Emma and I were sitting here watching the season finale of Survivor tonight, a commercial came on TV for a plus size women's clothing store. I've seen it a million times before. The women are beautiful, plus sized, posing in front of a peach coloured screen out in some park type location. I'm not quite sure what the point is of the random peach coloured screen just hanging out there in the middle of the park....but that's beside the point.

Emma turned to me and asked me why all of the models were bigger than the usual models she has seen on TV commercials. She didn't know that it was a commercial for a plus size closing store...but she did notice that the models were a bit larger than the typical women parading around on TV flipping their hair about as a breeze blows their clothing ever so gently.....why must there always be a breeze anyway? I haven't quite grasped the advertising advantage of that one. Anyway, I told her that these women on this particular commercial were modelling clothing from a plus size store. She seemed to accept that fact, pausing for a moment...and then asked me, "well why don't they have some of those women model clothes on TV for other things too or for other stores that have ALL sizes?"

It was a valid question. There are very few REAL looking women represented on TV. Usually there are scantily clad, extremely thin, pouty lipped women plastered all over the screen. The fact that this particular commercial warranted a comment from my daughter shows me that it is noticeable even to her.

Sometimes I wonder how much the world would change...if at all...actually if real women were represented more in advertising. Sometimes I wonder if girls like my daughter grew up with the plus size, thin, and somewhere in the middle model types represented equally....if it would change their perception of what is pretty. Sometimes I wonder if there was a better mix of body types out there on TV commercials, magazine covers, or billboards....would it help their self esteem? Would they see that all of these women are just as beautiful even though they are physically different? Or would it still be the same way it's always been? Is our perception of what is pretty or beautiful or worthy of being a model representation something that is ingrained in us from a young age?

.....and then Emma asked me, "Mommy, how come you never see models with insulin pumps on TV?"

I know some of you are probably thinking...well who cares? Why are you concerned with models and why are you making it seem like your kid is basing her self image on models on TV? Well, I just want to clarify....I make a conscious effort to build my daughter up...make her realize her own beauty...make her see that TRUE beauty comes from within. I've had many discussions with her about how a person can be physically appealing on the outside...but if they are mean or rude on the inside...it makes them less pretty...less appealing...less beautiful on the outside. I think she understands that and takes it to heart.

However, she is a young girl....growing up in a world dominated by media overload. I sometimes feel like I am fighting a losing battle. I will always reinforce to her what an honest and true beauty is. I can't help but think that it would make my job as her Mom a little bit easier though if things were different.

...."Mommy, I think it would be cool to spot a pump tube coming out from one of those models pockets."

I have to agree...I think it would be pretty cool too.

What does it mean to be a Mom?

What does it mean to be a Mom? Sure, we cook, we clean, we work, we are our kids chauffeurs, their teachers, their friend. We teach them how to speak, how to walk, feed themselves, dress themselves, tie their shoes, brush their teeth. We teach them the alphabet, how to count, how to spell their name, how to write, and how to read. We teach them that if they have one apple and we give them another apple....they now have two apples. We teach them to share, to be kind to others, to have respect, and to believe in themselves. We teach them how to ride their bike, how to swing at the park on their own, and that it's not very safe to climb up the slide...slides are meant for sitting on your bum and sliding down....that one never seems to sink in with them though, right? We teach them not to talk to strangers, to look both ways before crossing the street, and to call 911 in an emergency...and no...Mommy telling you that it's not ok to swing from the ceiling fan even though you really want to is not a type of emergency that 911 is used for. We teach them to tell the truth...even when the truth means they might get in trouble...it's still always better to tell the truth. We teach them to be kind to animals...love them...be gentle with them...feed them, walk them, and clean up after them. We teach our children to dream big...no matter how young they are. We teach them to stand up for themselves and for others. We teach them that it is better to give than to receive. We teach them to be polite...say please and thank you...you're welcome and that was thoughtful of you. We teach them to work hard...that nothing worth getting in life will come easy. We teach them to be greatful for what they are blessed with....a home...a family that loves them...food in their bellies...and clothing on their backs. We teach them that the world is a tremendously big place...but that doesn't mean that our one voice can't be heard. We teach them that it's important to never stop learning...ever...throughout our entire lives we learn. We teach them that even we make mistakes...we're not perfect...there's no such thing as perfection. We teach them that making mistakes is a good thing...it's how we learn. We teach them to pursue things that make them happy...discover their talents...seek out ways that they can bring joy to the world around them.

We teach them all of these things and more. We are magical creatures truthfully. We can make the tears stop and the pain go away with a kiss and a cuddle. We can bring a smile to their faces in the midst of a bad day. We can fill the room with their giggles when giggles really are the last thing they wanted to do. We are their heart...their home....their light and their love. We are Mom...Ma...Mommy...Mama...and for a brief period of time during the teenage years...Mother.

No one can love as strongly as we do. No one can love as deeply as we do. We are their biggest cheerleaders and their most dedicated fan. No matter how far away from us they may be....they are always in our minds and our hearts. They are the reason for everything that we do.

What does it mean to be a D-Mom? All of the above and then some. We cause our type 1 kids pain on a daily basis because we love Them. We never sleep because we love Them. We worry about what is going on inside their body every single day because we love them.  We have taken on the role of their pancreas even though we have no experience...no idea what we are in store for...sometimes no idea what we are doing....all because we love them. We work with them, their pump, their pen needles, syringes, blood sugar meter....to keep them alive every single day. They are the first thing on our minds in the morning...as soon as we open our eyes...before we even step foot out of bed........and they are the last thought that sweeps through our exhausted minds at the end of the day.

There is not a word that has been invented yet that can describe our love for them.

Being a Mom is the most incredible feeling on the planet.

Happy Mothers Day to my own Mom, all of the other Moms in my family, my friends that are Moms, and my D-Moms. You inspire me and I am greatful to be a part of your lives.