Monday, April 29, 2013

Suffering

Every so often, I come across magazines or TV commercials or ads on the Internet that say things like "suffering from diabetes?...blah blah blah...buy our product." I hate that phrase.....suffering from diabetes.

My daughter does not suffer from diabetes. She does not spend her days walking around in agony. To me, the word "suffering" conjures up this image of people in third world countries starving...emaciated...unwell. The word "suffering" is what Emma's teacher would refer to as a "delicious word." It evokes this feeling inside the reader that makes them feel pity. I don't want people to feel pity for us. I don't want people to feel pity for my daughter. I don't want her to go through life having people look at her with THOSE eyes...you know the ones I mean.....the 'oh I'm so sorry you have to deal with this...you poor thing...it must be so hard' eyes. I don't want her to see those eyes because.....it's not true. She is not suffering....she doesn't need pity. I want her to live her life as she wishes....without fear and without pity being tossed upon her.

I want her to be strong. I want her to be strong in mind, spirit, and body. I don't want her to feel like she is any.....less....than any one else. I don't want her to feel like she is always starting things at a disadvantage...because she's not. She is just like every one else....just like every other little girl out there. I don't want her mind to be poisoned with pity or feeling inferior.

A person who happens to have type 1 diabetes...is just that...a person. Yes, they are extraordinarily brave. Yes, they know what it's like to feel pain and worry on a daily basis. Yes, they are strong...tremendously strong. They have seen things and lived through things that could make others cower in the corner. They are unique. They are all of these things and more. They are people.

There is no suffering in our life. If I were to view diabetes as something my daughter suffers from, I think that would be the same thing as admitting defeat...and that is one thing that I will never admit.

Saturday, April 27, 2013

That point is today

Do you feel like there is a point you will reach in your life as a D-parent where people just assume that you are ok and don't need help or don't need a shoulder to lean on? Do you think after so many years of doing this that you start to portray this image of having it all together...or at least as together as you can have it when it comes to D? Do you think that because you have spent so many years finding your groove and learning how to make this life work...that people just look at you and think that you don't need them anymore?

I do. I think that. For me that point is now. Today.

We are coming up on five years with diabetes living in our house, and I have been feeling this way lately. I feel like I am beyond that point of newness...beyond that point of getting angry over it and upset over the everyday blips and frustrations. I have trained myself...changed myself...adapted myself to see those frustrations for what they are....small moments in time. What bothered me 4 years ago....doesn't really bother me as much now. Diabetes beat me down to a pulp in the beginning. It changed my life...my families life...my daughters life. Time is a funny thing though...time passed...days turned to weeks...to months...to years. Time doesn't heal all wounds...but it does make them sting less...it makes you numb in a sense. Time passed and I moved right along with it.

I have to admit though, that I still need help. I still need support. I still need a shoulder to lean on. I still cry. I would have thought after this many years that the tears would have dried up by now....there must be none left...I've cried enough to fill an ocean I'm sure.

There's always some left. Always.

I will always need help. I will always need support. I will always need that shoulder to lean on. Just because I have been doing this for so long doesn't mean that I am strong...it doesn't mean that I have it all together...it doesn't mean that I am not affected by the tremendous amount of pressure that comes with keeping my child alive every day. Just because I have been doing this for this many years, doesn't mean that I can stand in the face of diabetes and win every stare down. I lose sometimes.....hell, I lose a lot of the time.

The only thing I think that is different is that I have acquired the ability to keep going...and know in my heart that I can do it. Time has taught me that much. I can do it...even when I feel like it's just not possible.

Tuesday, April 23, 2013

Looking back

A friend asked me today how I was able to cope when I found out emma was diagnosed at only 4 years old. 4 years old is so young...so tiny...still too little to really be able to understand what was going on.

My first reaction was to reply with the old...ahhh...it was ok...we managed...I'm almost glad it happened when she was only 4 instead of having it happen when she was much older, because at 4, I still could be the one in charge of the food she ate...and I could still count on her following what I said when it came to this new life.

I didn't say that though. It seemed too......wrong...too nonchalant....like I was just brushing it off...and that's not my style. So I was honest. I told her that I honestly think that I was in shock for the first year. Sure, it got a tad bit easier as the days went by...and it became more of a routine...but for the most part, I think I was just in shock...numb to the reality of what was going on in front of my eyes. I didn't let myself think about it. I didn't let myself feel it. I didn't let myself scream or cry or get the anger and frustration out....because I was in shock....and I am stubborn...and I didn't want to let go...I held onto those daily tasks and used them to get by. I held onto the carb ratios and needles and finger pokes. I held onto them for dear life and found a sort of.....probably unhealthy....comfort in the tasks. I took it a moment at a time. I immersed myself in the routine and education.

It took Emma about a month to give up the fight and accept this as her new life. She used to scream and thrash about and cry and hate every single second of injection time. It killed me inside a little bit every single time.....and I had to do this to her at least 4 times a day....every...single...day. I think when that first month was over....and I saw her lose that fight and that stubbornness....it hardened me....it changed me....it broke my heart in two. Yes, it made my days easier and the injections easier....but to not see her fight anymore and to see her just accept it....ahhh....it hurt....it hurt more than the day she was diagnosed honestly.

So, I held onto the routine. I despise math...and I found a sense of comfort in the calculations and the numbers. I found comfort in seeking out the patterns. I found comfort in the routine. I think she found comfort in the routine as well. Yes, when I caught sight of the bruises from injections on her little round 4 year old belly....it took my breath away. Yes, when I taught her how to check her own blood sugar.....it felt like a red hot poker right through my heart. On the inside, I was screaming NOOOOOO THIS IS WRONG!! THIS ISN'T NORMAL!!! THIS IS NOT SOMETHING A MOMMY SHOULD HAVE TO TEACH HER 4 YEAR OLD CHILD!!
....but on the outside....I was smiling with pride at how she had adapted and accepted and at how she had a never ending desire to learn. Maybe that was HER way of coping....maybe it was the only way her little 4 year old self could make any sense of it all.

When I look back on those early days, I feel the heartache just as strongly as I did then...but I also feel a sense of pride...and accomplishment...and fierce love. We have changed so much in the past 5 years....and yet deep down inside....way deep down....in that special place inside my heart that I protect with unrivalled intensity.....we are still the same...we are still Mommy and daughter. I won't ever let diabetes take that away.

Thursday, April 18, 2013

Totally helpless

Someone posted today on Facebook asking us to share what we think diabetes feels like. I said that it's about learning to live in that gray area. Diabetes is not a black and white thing. There are no clear cut answers on how to manage it. We have to roll with the punches and somehow make it work.

Something happened today that rocked me to my core. We've been doing this for a while now, so I have rolled with the punches and somehow learned to keep my daughter alive. Today however, I had a slap in the face reminder that no matter how much I prepare or how many shreds of confidence I have managed to pluck back from diabetes greedy hands, shit still happens.

Emma and I decided to walk to Dairy Queen after dinner and get some ice cream. The weather was beautiful and we spent much of the afternoon outside enjoying the sunshine and playing soccer in the backyard. I've been battling lows all day today because of the extra activity and the nice weather...but before we left on our walk...I did what I always do...I checked her blood sugar and grabbed 4 fruit snacks to bring with in case of lows. She was at a decent blood sugar and using my d-mom crystal ball...I assumed that I might need to use at the most...1 of those fruit snacks on our journey. I brought 3 extras...just in case. Since it was a nice day, I didn't want to lug around my big purse and decided to simply bring the essentials...money, blood sugar meter, keys, and snacks.

As we reached the halfway point on our walk...which just so happens to be the playground at Emma's school...she turned to me and said she felt low. We stopped and checked...and I was stunned to see a 2.2 staring back at me on the screen of the meter and she still had 3 units on board. Emma sat down on the ground, I gave her fruit snack #1, turned off her pump, and felt the old familiar icy cold panic settling into my heart. I managed to get her over to the bench next to the climbing structure and she sat down. The tears began to flow....she was beginning to panic. Emma doesn't normally panic or cry over lows. She usually eats or drinks juice...talks to me while she waits for that low feeling to go away...and we carry on. This time though...it was different. I handed her fruit snack #2 and she wolfed it down between sobs. I felt that ball of icy fear growing inside me. Fear was settling into every bone of my body...and I was stunned to hear my own voice come out sounding so calm and rational and soothing to her. I was telling her that it would be ok...she would be fine...we always get it back up...and she is always fine...we would be ok...don't worry. I checked her blood sugar again at that point...still low. I handed her fruit snack #3 as I felt the fear spilling over and coming out in hot tears from my own eyes. Emma wolfed down the fruit snack and began sobbing uncontrollably saying how she was scared she was going to die. I removed her sunglasses from her pale tear streaked face so I could see her eyes...because I can always see the lows in her eyes...her beautiful brown eyes...her vacant sugar deprived stare...lost in her own world of chaos and fear for her own life...she's 9 by the way...did I mention that she's only 9 years old? There sat my 9 year old girl sobbing uncontrollably telling me that she was afraid she was going to die. Die. Because of diabetes....the look in her eyes and the words that fell from her panicked lips....it broke me.

I felt like I was in fight or flight mode. I am her Mommy. I am the one who is supposed to save her...supposed to help her...supposed to make the panic go away...I'm supposed to make it all better...kiss it and make it better...make it go away. I looked around me and in a span of 30 seconds I thought....I could pick her up and run down the street and bang on someone's front door and ask for juice...ask for help....I could pick her up and run back home...I could pick her up and run the rest of the way to Dairy Queen...I could find a rock or use my fists to punch the glass. On the window of her school and break into her classroom and take some of the stockpiles of juice boxes or candy that is in her classroom...sure the police would come...sure I would be in trouble...but my kid would be alive....I could call 911....I could call a friend....yes...txt a friend...txt my friend that lives down the street because I saw her van parked in her driveway as we started out on our walk..so I know she is home. Checked Emma again...still low...handed her fruit snack #4 and texted my friend....can you pick us up at the school? She's super low and I'm scared to walk her back home and I'm out of juice. She texted me back immediately and said she was on her way.

I spent the next two minutes it took for her to get there with a sick feeling in my stomach. There I was ...with no snacks left...no possible way of helping my child...I was helpless...out of control...empty. I did what I always do in moments of panic and stress for Emma...I tried to make her laugh. I had nothing else left...nothing....except my ability to make her smile in spite of it all. It was all I had.

My friend arrived with juicebox in hand and a worried look on her face. She saved us. She saved my daughters life. I needed her...Emma needed her...and she came...in an instant...and she brought juice...and when I explained what we were doing at the school and how we were on our way to Dairy Queen....she told Emma that we should still go. I don't know if she knows how much it meant to Emma to still go to Dairy Queen...but I know it meant the world. Emma was sad...disappointed...mad at diabetes for ruining her chance to go to Dairy Queen...and my friend took us there anyway. We went together...had our treats....talked...laughed...and had a good time.....diabetes didn't win.

How do you thank someone for saving your child's life? How do you find the right words to make them understand how greatful you are for their presence in your life? I don't think that there are words available. All I can think of is thank you....and that seems so lame in comparison. I love her. I know Emma loves her. She was our hero today. She saved my daughters life. She was standing there right along side Emma and I and she helped us knock diabetes down to the ground.

So, while the tears fall as I type this.....they are no longer tears of panic...but rather tears of indescribable gratitude. Gratitude for my friend...gratitude for the ability to roll with the punches and make it through this moment alive...and gratitude for the chance to hug my daughter extra hard and kiss her cheeks a few extra times when I kissed her goodnight at bedtime tonight.

Monday, April 15, 2013

Sometimes I Cry

Sometimes I get sad. Sometimes the tears fall because the enormity of the situation is just too much. The tears escape even when I don't want them too....even when I try to fight them...even when I feel silly for letting the sadness get to me. Sometimes the tears fall...and I feel weak...I feel angry at myself for letting my guard slip and letting the tears spill over.

Sometimes when the house is quiet and I'm left with my own thoughts screaming at me inside my head....I feel like the only way to let them out would be to simply open my mouth and scream....but I don't...because the quiet is so.....quiet....and I am afraid of the power that would be behind that scream if I let it out.

So I cry. I let the tears fall. My cheeks are hot and covered in my tears. Sometimes only a few escape....and other times they come fast and fierce and I sit there sniffling and hiccuping broken breaths in between my sobs....my glasses flung to the cushion beside me...because my tears and my hot cheeks have steamed the lenses and I can't see clearly anymore. I can't see clearly because I am trapped in the moment...this vulnerable...terrible...broken moment...and nothing else matters...I can't focus on anything.

I let go and the sadness pours out of me....

and when the tears subside...and I am able to breathe again...and see again...I feel numb. I feel tired and empty....and that's ok. I'm not perfect. I'm not a pancreas. I don't know everything. Diabetes is unbelievably hard sometimes. It hits me sometimes from out of nowhere....it hits me just how insane this life is...and I feel myself struggling to hold it in and keep it all together and wear my smile...my "it's all ok" look....my "it's not a big deal" look. Well, you know what? It IS a big deal. It's ok to be sad. It's ok to be pissed off.

It's ok to let the tears fall. Really, it is. It doesn't make you weak or not as good as the shiny happy all the time people. It doesn't make you any less of an excellent psuedo pancreas. It doesn't mean you are crazy.

It DOESN'T mean that you are crazy!

It means that you are real. It means that you are human.


Saturday, April 13, 2013

You can do it!!

I saw something amazing today. Emma and I attended a rock wall climbing event put on by ichallenge diabetes. There was a large group of kids with type 1 diabetes all having some fun and proving to themselves that they can do anything regardless of diabetes.

Emma has a fear of heights...like to the point of bursting into tears at the mere thought of going anywhere higher than her comfort zone. She was bound and determined to do this though. She wanted to go have fun, try something new, and face her fears. We are quite a few years into this life with D and it still astounds me to see first hand the incredible depths to a type 1's determination and bravery. They stare fear in the eyes on a daily basis and still manage to smile.

Emma got her harness on and waited in line to take her turn. I stayed a bit behind her...because she is 9 now and I am trying to give her more space and more of an opportunity to shine in her independence. I could tell just by looking at her though that she was having an inner battle with her fear. She had her arms folded across her chest and she was biting her nails. Her eyes were excited and yet terrified. When the time came for Emma to take her turn, she turned back to me with tears in her eyes and said she couldn't do it...she was too scared...too nervous...she didn't think she could do it.
I hugged her and she rested her tear streaked face against my chest. I told her it would be fine...she didn't have to do anything that she didn't want to do. No one would be upset with her and no one would make fun of her. I told her that she could wait...and think about it...and maybe try again in a few minutes. Well, here comes the amazing thing I saw......are you ready for it?......

Standing in line next to Emma was a little girl who is just a few months older than Emma....and she is the sister to a boy with type 1. They are part of a local family that we know and are friends with. This little girl stood there next to Emma and cheered her on....the entire way...from the moment Emma walked up to the wall and put her hand on the first grip...to the halfway point on the wall when she decided that she wanted to come back down again...because it was far enough this time and she was happy with her first attempt. This little girl stood there cheering her on...saying "you can do it Emma! You can do it! You're almost there! Good job! Keep going! WOOT! Way to go! Look at how far you made it! You did awesome!" This little girl gave Emma something that even I, as her Mom, couldn't give her. Sure, I told her how proud I was of her and hugged and kissed her and told her she did a great job.......but this little girl....oh she gave Emma so much more. Our friend gave Emma the confidence she needed...as her peer...as her friend...as someone who can relate to how her life is like now at 9 years old. This little girl gave Emma that special kind of support that only a friend can give you.

By the end of the event, Emma had made it to the top of the wall. She was scared...she wanted to give up on her way up the wall...but she didn't...she faced her fears head on and kept going. I stood at the bottom of the wall staring way up at my extra sweet girl...my heart pounding wanting her to reach her goal...wanting her to not give up...wanting her to truly feel her strength and her determination and her bravery. I wanted her to FEEL it inside of herself. I see it every single day and I tell her all the time....but in that moment, I wanted more than anything for her to feel it and see it in herself.
Well, she did...and I have no words to describe how much pride fills my heart tonight.

Thursday, April 11, 2013

My letter to you...

Dear diabetes,

More often than not, you are a pain in the ass...but I'd like to take this chance to thank you. I want to thank you for teaching me that life is not only about the milestones you complete or the goals you reach. It's not about the price you pay or the number of times you have had it worse than the next person. It's not about who is the prettiest or the funniest....which is a shame...because I am seriously funny...I make myself laugh at least once a day. Thank you for teaching me that nothing that is worth it comes easy in life.
I owe you a lot actually. You have given me an incredible family that I otherwise would not have met. You have given me superhuman powers that enable me to know when my child is in danger simply by looking at her. You have taught me that it's ok to live in the moment...it's ok to take it slow...it's ok to leave the dishes piling in the sink and the laundry basket overflowing. You have shown me how to be humble. You have shown me that time passes very quickly...so I had better take time to stop...pause for a minute...truly look at the world around me and notice it. You have taught me how to see the world around me in a whole new way. A compassionate way. A softer way. A more trusting way.
I've learned that there is absolutely nothing in the world that comes close to the tremendous amount of determination and perseverance that a person living with diabetes has. It's inspiring really. They make me want to be the best me I can be.
I also would like to thank you for teaching me some of the common sense simple things. I have learned to never pass up a good deal on AA or AAA batteries. I have learned that no matter how many years we have been doing this, and no matter how many nutrition labels I have read...insulin to carb ratios I have done....or combo boluses I have figured out....I still suck at math...I still hate it...and I still have echos in my head of my 12 year old self questioning when I was ever going to need to know how to do any of the math I was learning. I still hate math...and I have learned to live with it...every day...and somehow not feel defeated. I have learned that my iPad will eventually stop autocorrecting "boluses" to "blouses."
I have learned that not everyone gets it....and that's ok...I don't get everything they are going through either. I have learned to concern myself more so with the compassion and respect part of it. I don't expect everyone to understand us or get what we are talking about. I do hope that I can somehow inspire a sense of compassion in people though...and make them see that type 1 diabetes is not easy...no matter how easy we make it look...it's not...so that mutual feeling of compassion a human being can feel for another is of utmost importance.
So, thanks diabetes. Thanks for teaching me these past five years. Thanks for being there to show me that I am stronger than I ever thought I was and that even when I am staring your strong relentless ugly face square in the eyes.....and I am scared out of my mind...and feeling like there's no way I can do it....I still keep trying. Thank you for teaching me what it means to be relentless. I learned from the best...you have taught me well and I know the day will eventually come where the student surpasses the teacher.
So, in the spirit of the most ultimate student/teacher duo that I can think of....wax on....wax off...buddy......wax on....wax off.

Hugs and kisses,

Amy
(D-Mom since 2008)

Monday, April 8, 2013

My sisters

If you had told me five years ago that  I would love someone that I only knew through the computer, and had never met in person, I would have thought you were just plain silly.
If you had told me five years ago that I would have formed such an incredible bond with other people...women...D-Moms....that my heart literally pounds in my chest when I read about their children having low blood sugars, I would have shrugged it off and not believed it possible.
If you had told me five years ago, that I would do anything....ANYTHING....to help them when they need me, I would have never honestly considered it.

Now I know.

Now I know what it feels like to have a sister. Now I know what it feels like to truly care so much about someone that you would do anything for them to make their struggles easier to handle. I get it. I understand the life they are living. I have felt the feelings they are feeling. I have been through the struggles they have been through. I have felt that icy cold panic that runs through your entire body when your child with diabetes becomes ill with a stomach virus. I have felt the frustration as the meter screams a nasty number at me and the ketones just won't seem to go away no matter how hard I try. I have felt that pure and real exhaustion. I'm not talking about that losing a few hours sleep because my kid has a bad cough or a fever kind of exhaustion...I'm talking about that special kind of exhaustion...the kind where you have been awake all night...the kind where you feel like your limbs are limp noodles attached to your body and your heart is beating so heavy that you can feel your pulse behind your eyes...right where a headache of tremendous intensity has settled. The kind of exhaustion where the mere act of taking a deep breath feels like just...too...much...effort. I know what it feels like to sob uncontrollably in the shower as the hot water beats down upon your weary shoulders. I know what it's like to be scared...truly scared. I know what it feels like to have that inner argument with yourself on whether or not you need to take your child in to the emergency room. I know what it's like to accept defeat...accept that I need help..accept that this disease is sometimes bigger than me. I know what it feels like to look into your sick child's eyes and tell them that we have to get in the car...it's time to go...Mommy needs help...I know you don't like the hospital...I know you don't want to go...I know you hate the IV needle...I know you're scared....but it's time....we have to go.

I get it. I lean on you for support and you can lean on me. We may have never met in person....but I still love you...I still love your child.

It's because of the bond. To try and describe this D-Mom bond and how strong it is to someone who doesn't live this life is next to impossible. It's unbreakable and never ending. It's unconditional and never without love. It's pride and joy and sadness and sorrow. It's very real and very tangible. It has saved my sanity and saved my life and my daughters life more times than I can count.

That bond will carry us through to the end...it will carry us through the depths of despair and the peaks of our triumphs. That bond is love. That bond is strength. That bond is OURS.

Saturday, April 6, 2013

Diabetes and Monsters Inc

Today was a good day. I sometimes get so caught up in the stress of diabetes that I forget to reflect and hold onto the good days. Diabetes wasnt perfect today...but really...is it ever perfect? I'm not a pancreas...I'm a Mom...so no matter how hard I try and no matter how much I want it...I need to remember that perfection is not possible.

I spent the majority of my day laughing with Emma. We didn't do anything special or anything out of the ordinary routine of our typical Saturday....but it was fun anyway. I laughed until tears were running down my face and I couldn't breathe. I laughed that special kind of laugh that comes straight from your core where you lose all control of the world around you. It doesn't matter if you are in a public place. It doesn't matter if you are in a room full of people. It doesn't matter if people are staring at you like you have lost your mind. You just laugh...because its impossible for you not to.

Diabetes was still there. We still counted carbs and gave insulin. We still checked blood sugars and even had a low. But it didn't matter...it didn't phase me...because of her. I looked at her face as she was laughing uncontrollably and I knew...I knew deep within my soul that we will be ok...we will be fine...we will conquer this life and nothing will stop us...not even diabetes.

It occurred to me today that this life is sort of like the movie "Monsters Inc." In the beginning of the movie, the monsters main job is to collect screams from the kids when they creep into their room at night. The screams are collected and used as energy to power the city the monsters live in. Well, they learn during the movie that screams are in short supply these days because kids aren't as afraid of monsters as they used to be. So, they discover that laughter is actually an even stronger source of energy for them! You may be thinking to yourself...ok...you lost me, Amy...so let me bring it back in for ya.

Diabetes is scary. There are times where it feels like the weight of that fear is enough to crush me. The highs and lows and illnesses and everything in between can sometimes be so completely overwhelming that the pure energy of that fear is crippling. However, when we have days like today...days filled with belly laughs and jokes and smiles....the feeling of that energy is overwhelming. The power that the laughter leaves behind on my soul is incredible. It makes me feel like I could run a marathon...climb any mountain...show the world that we CAN do this...show MYSELF that I CAN do this. I can be the best psuedo pancreas I can possibly be. I can do this. I AM doing this.

Laughter is more powerful than fear. After today, I believe that with every fiber of my being....so I choose to smile...I choose to laugh...I choose to LIVE.

Thursday, April 4, 2013

I am strong because I am a d-mom

Do you want to know what I like about the tough times with diabetes? I like that they make me stronger.

Sure, while I am in the midst of the chaos and the fear and the worry over low blood sugars that just won't seem to come back up....it hurts...it makes me feel defeated and broken and like a failure. It makes me feel like I am not in control of the situation and like I'm all alone....full of despair and exhaustion. I walk away from a night of battling stubborn high blood sugars that came out of nowhere...feeling like I have just gone 5 rounds in the ring with Mike Tyson. The difficult times with diabetes make me feel like there is no chance I could ever win...like I'm fooling myself for even thinking that I can do this...like my daughter should consider herself lucky that she has made it this many years with me at the controls of her pancreatic function. When I am standing there dumbfounded at the blood sugar number pattern that resembles a roller coaster ride from hell, I feel like I am not smart enough to decipher the numbers...the ratios...the basal rates. The numbers swirling around my head in that moment feel like a tornado rip roaring through my poor tired brain and I'm left to wait it out...gripping my metaphorical flashlight of patient reality...biding my time...waiting for the dust to settle so I can see clearly again.

When all is said and done...and we make it through the storm...I'm amazed at the strength that I feel. I'm amazed at the sense of self pride that I get. I sit here and look back over my shoulder for just a moment and smile...because I did it...I held my flashlight and I carried my extra sweet girl upon my back as we weathered the storm...and we made it.

Diabetes is not a game. It's not easy. It's not for the faint of heart. For as much as I hate this disease, I can't deny the fact that it has made me a better person.....a stronger person. Being a d-mom is not just about putting on a brave face and making it look easy. It's about falling down flat on your face...broken and defeated...and realizing that your true purpose lies within that moment. Being a d-mom is about accepting the things that you can not change...and being able to keep going. It's about letting the tears fall during your darkest hour...and knowing that it's a moment in time that will make you stronger than you were before.

Diabetes makes me feel strong...and for that I am greatful.

Tuesday, April 2, 2013

Sitting on her bedroom floor at 1:00am

Sitting on the floor of her room...it's almost 1:00am....here we are again. Another low. It didn't wake her up. They never wake her up. How can I ever sleep again? It's been almost 5 years and we are still doing it...still not sleeping...still worrying...still scared. How long will it go on? Sitting here on her bedroom floor...watching her sleep...peacefully...oblivious to the fact that my heart is pounding and crazy thoughts of will I lose her this time...will diabetes win this time...will I be that parent...will we be the ones you read about tomorrow on Facebook. Will diabetes win this time? Has my luck run out? I try and try and try until I have nothing left to try with anymore...and then somehow I still keep trying. I hate you diabetes. I hate that you cause these frightened tears to fall from my eyes. I hate that you steal away my sense of security and comfort. I hate that you do this to us.
Sitting on the floor of her bedroom...staring at the clock...trapped in this moment of time...my own personal bubble of fear....watching her chest rise and fall...waiting for my worst nightmare to come to life before my very eyes....waiting for her to gasp for air and her body to twitch and begin convulsing in seizures...because of you....YOU.
She is MY daughter....she does not belong to you...and yet I'm forced to share her with you. I hate you. Every single part of my body is on red alert...watching...waiting...for the worst...hoping for the best...praying that I will win again...knowing that the odds are stacked against me...but hoping anyway.
The sound of the humidifier in her room is constant and soothing and calm. The bright colours of her stuffed animals and painted monkeys on her walls screams happy...fun...child...to me...and here I sit....watching the clock...waiting....trapped.
What I wouldn't give to trade places with her....take this from her...shoulder the weight of it all for her forever and ever. Who will be there to sit on her bedroom floor when she is grown? Who will watch the clock? Who will make sure she lives to see the morning sun?
I hate you in this moment diabetes. I hate that you fill my mind with these terrifying thoughts as I sit here on the floor...waiting...watching the clock....my heart pounding so hard that I am amazed the sound does not wake her.
I wish I could make the world understand that diabetes is not just about food and exercise and sugar. It's about moments like this.....moments of pure unbridled fear...icy cold...running through my veins and threatening to burst my heart. THIS is diabetes. THIS is what it's like.
THIS is our life...sprinkled in between moments of total bliss....are moments like THIS that make it hard to breathe...diabetes is suffocating me....as I sit...
Here on the floor of her bedroom...at 1:00am with tears streaming down my face...watching her chest rise and fall...and waiting......