Let me out into the light
that washes away the darkened night
The skies open and welcoming
each whispered breath falling from your lips
I find sweet on my tongue and yet bitter on my fingertips
Let me out into the light
bring me back into your faithful plight
I see the struggle
I can wade through the mess
A broken down pickup
rusted and smashed
Tucked away in the corner lot
Forgotten and undressed
Let me out into the light
smother me in the kisses of your gaze that is bright
the vast land
of your painfully small mind
will give me comfort
like pocket change discovered beneath the lint
Let me out into the light
to hold your hand and be alright.
I can forget
I can move along
I can close the door
and pretend nothing's wrong.
Friday, December 30, 2011
Wednesday, December 28, 2011
A Poem...no wait...a Story
Don't be scared
for you are not lost
you are filled with a thousand lights
to guide you through the night
Don't be silent
for you are not alone
your voice matches that fevered pitch of mine
I will release your silence upon the skies
I started writing that poem just now and got an incredible visual in my head...so I had to stop writing it and write my little story/description instead. I hope it doesn't sound like just a bunch of randomness.
An ageless man looks out from the watchtower window
settling his gaze upon the scurrying below
the maniacal method in which they move
the relentless motion of their crazed and hungry eyes
leaves him mourning for the loss of unity
the loss of hope
the loss of one
the loss of love.
His ancient eyes full of wisdom and giving
settle on a single heart
flitting about
running in circles searching for the
reason
the reason for her madness
the reason for her days.
His long white hair picks up in the cool breeze that blows past
lifting off his shoulders and floating out all around his wrinkled face.
He shivers at the thought of her caged soul
her true spirit and light locked away forever
hidden from the world
lost from the life unfolding before her.
He weeps at the thought of her powerful beating heart
standing alone
beating as one
a singular song swept away in the night
the melody so sweet
and yet it will never be heard
never to be joined in song
with another to accompany hers in perfect harmony.
He locks eyes with her
he is leaning out the watchtower window above
and she is falling dizzily to the ground
in the middle of a beaten muddy track she has created with her own two feet
in the middle of an open field of grass
soft lazily floating grass
forgiving grass
comforting and cool to the touch
They lock eyes
from worlds apart
and he feels the fever of her madness
the precarious step on which she lives
the brink between two worlds.
She feels his curious stare
his wrinkles show the depth of his understanding
his pale blue eyes show the comfort and grace
They smile as one
close their eyes as one
and sigh as one.
Lost in a moment of silence
and peaceful unity.
for you are not lost
you are filled with a thousand lights
to guide you through the night
Don't be silent
for you are not alone
your voice matches that fevered pitch of mine
I will release your silence upon the skies
I started writing that poem just now and got an incredible visual in my head...so I had to stop writing it and write my little story/description instead. I hope it doesn't sound like just a bunch of randomness.
An ageless man looks out from the watchtower window
settling his gaze upon the scurrying below
the maniacal method in which they move
the relentless motion of their crazed and hungry eyes
leaves him mourning for the loss of unity
the loss of hope
the loss of one
the loss of love.
His ancient eyes full of wisdom and giving
settle on a single heart
flitting about
running in circles searching for the
reason
the reason for her madness
the reason for her days.
His long white hair picks up in the cool breeze that blows past
lifting off his shoulders and floating out all around his wrinkled face.
He shivers at the thought of her caged soul
her true spirit and light locked away forever
hidden from the world
lost from the life unfolding before her.
He weeps at the thought of her powerful beating heart
standing alone
beating as one
a singular song swept away in the night
the melody so sweet
and yet it will never be heard
never to be joined in song
with another to accompany hers in perfect harmony.
He locks eyes with her
he is leaning out the watchtower window above
and she is falling dizzily to the ground
in the middle of a beaten muddy track she has created with her own two feet
in the middle of an open field of grass
soft lazily floating grass
forgiving grass
comforting and cool to the touch
They lock eyes
from worlds apart
and he feels the fever of her madness
the precarious step on which she lives
the brink between two worlds.
She feels his curious stare
his wrinkles show the depth of his understanding
his pale blue eyes show the comfort and grace
They smile as one
close their eyes as one
and sigh as one.
Lost in a moment of silence
and peaceful unity.
Tuesday, December 27, 2011
We were robbed
Sometimes I feel like I was robbed. I feel like a ski mask wearing burglar snuck into my house in the middle of the night on June 25, 2008 and robbed me. I feel like up until that point I was floating along in this blissful easy cheerful "normal" land. Spending my days playing with Emma, laughing carefree, going to the park, teaching her all of these new and exciting things that the world had to offer. I was one of those Mom's you see at the park...putting sunscreen on their kid, giving her a juicebox, splashing through the sprinklers, and giggling along with her. I was one of those Mom's you would see splurging at the movie theater and treating their kid to a big bag of popcorn and candy with a slushy to drink. That Mom was me...happy and for the most part free from true honest to goodness stress and worry.
And then I put my daughter to bed on the night of June 25, 2008. Little did I know that would be my last day of easy...my last moments of floating along in the free and happy land of the simple life. That life was taken from me while I laid my head down on my pillow and fell asleep...my last truly good sleep ever...my last worry-free, panic-free, anguish-free, stress-free sleep. I hope that I enjoyed it...and I wish that I could have been able to know somehow that it was in fact my last "normal" sleep...I think I would have enjoyed it even more then. You see, diabetes broke into my house that night...it stole a huge chunk of my heart...it robbed me of that safe and happy feeling...it took my comfort...my ease...my peace. Unfortunately it didn't just steal from us...it also left behind a gift that I really could have done without. It left behind a piece of itself in my daughter...my baby...my heart.
Diabetes took away that "normal" childhood. It robbed me from ever having the opportunity of having an easy life. Sometimes I sit back at the park now and watch other Mom's...women who belong to the group that I used to belong to...and I see glimpses of what our lives could have been like. I see flashes of Emma running at top speed to get to the slide...red sticky cheeks from having eaten a popsicle...hair flying in the wind behind her. I see her screaming and laughing with her friends...without that look in her eyes...that knowingness...that wisdom that comes from having lived with this disease for almost 4 years now. I see her big brown eyes clear and carefree...I see them sparkling and happy...at peace with her life and how easy it is. My heart breaks when I see those images of her. I feel that sick longing creeping up from my stomach and settling in my throat...forcing the tears to my eyes. I feel that longing for what our life could have been like and it hurts. I've gotten really good at shoving those tears way down deep over the years. I gotten really good at convincing myself that I am tougher than that and I don't care and I can handle this life and I am not missing anything and Emma is no worse for the wear and she is still living a normal life and she is just like her other friends and she can have that popsicle and she can run full tilt with her friends and just BE A KID. I've gotten good at convincing myself...you see, I have this little soldier like voice in my head yelling at me that wishing for that life and imagining it and longing for what could have been....is not going to do us any good...it's not productive...it doesn't help anything and it will only cause my heart to hurt and my eyes to water. I hear that voice as I watch those Mom's...and I believe it...I listen to it and I know it's right...but I still do it. I still long for what could have been and I don't think I will ever be able to stop doing that. I'm sure those moments will become further and fewer...but I don't think I will ever be able to completely stop thinking about what could have been. That's not to say that we don't have a great life now...because we do. We have an amazing life and I have an amazing daughter who lives as normal a life as I can possibly make happen for her. I just wish I could erase that knowing look from her eyes sometimes...I wish she didn't have to know all of the things she knows at 7 years old. Yet another little gift that diabetes left behind that night...too bad I can't find the gift receipt and take it back.
And then I put my daughter to bed on the night of June 25, 2008. Little did I know that would be my last day of easy...my last moments of floating along in the free and happy land of the simple life. That life was taken from me while I laid my head down on my pillow and fell asleep...my last truly good sleep ever...my last worry-free, panic-free, anguish-free, stress-free sleep. I hope that I enjoyed it...and I wish that I could have been able to know somehow that it was in fact my last "normal" sleep...I think I would have enjoyed it even more then. You see, diabetes broke into my house that night...it stole a huge chunk of my heart...it robbed me of that safe and happy feeling...it took my comfort...my ease...my peace. Unfortunately it didn't just steal from us...it also left behind a gift that I really could have done without. It left behind a piece of itself in my daughter...my baby...my heart.
Diabetes took away that "normal" childhood. It robbed me from ever having the opportunity of having an easy life. Sometimes I sit back at the park now and watch other Mom's...women who belong to the group that I used to belong to...and I see glimpses of what our lives could have been like. I see flashes of Emma running at top speed to get to the slide...red sticky cheeks from having eaten a popsicle...hair flying in the wind behind her. I see her screaming and laughing with her friends...without that look in her eyes...that knowingness...that wisdom that comes from having lived with this disease for almost 4 years now. I see her big brown eyes clear and carefree...I see them sparkling and happy...at peace with her life and how easy it is. My heart breaks when I see those images of her. I feel that sick longing creeping up from my stomach and settling in my throat...forcing the tears to my eyes. I feel that longing for what our life could have been like and it hurts. I've gotten really good at shoving those tears way down deep over the years. I gotten really good at convincing myself that I am tougher than that and I don't care and I can handle this life and I am not missing anything and Emma is no worse for the wear and she is still living a normal life and she is just like her other friends and she can have that popsicle and she can run full tilt with her friends and just BE A KID. I've gotten good at convincing myself...you see, I have this little soldier like voice in my head yelling at me that wishing for that life and imagining it and longing for what could have been....is not going to do us any good...it's not productive...it doesn't help anything and it will only cause my heart to hurt and my eyes to water. I hear that voice as I watch those Mom's...and I believe it...I listen to it and I know it's right...but I still do it. I still long for what could have been and I don't think I will ever be able to stop doing that. I'm sure those moments will become further and fewer...but I don't think I will ever be able to completely stop thinking about what could have been. That's not to say that we don't have a great life now...because we do. We have an amazing life and I have an amazing daughter who lives as normal a life as I can possibly make happen for her. I just wish I could erase that knowing look from her eyes sometimes...I wish she didn't have to know all of the things she knows at 7 years old. Yet another little gift that diabetes left behind that night...too bad I can't find the gift receipt and take it back.
Monday, December 26, 2011
Amy vs. Diabetes the epic Christmas battle royale
Diabetes kicked our asses today....hard...in fact I should be sitting here on one of those little inflatable donut things they give people to sit on when they have certain problems going on in that general area. It was bad. We didn't have the madhouse roller coaster ride of ups and downs...high blood sugars and low blood sugars...leaving you feeling like you are lost in the middle of a desert sandstorm not knowing which way is up and which way is down. It was just me...in a room all by myself screaming my fool head off on the inside...trying to figure out if Santa somehow decided to switch the insulin that was inside her pump and replace it with water. I was chasing highs like nobody's business. I was in a race...the marathon run of my life. My mind was focused on one thing and one thing only...getting her blood sugars down to a normal range and keeping them there. I wanted to make that pale look disappear from her face...make those dark circles under her eyes leave...do whatever I could possibly do to make sure that she had a good day. I wanted to make her feel good and healthy and normal and get rid of those damn highs. It was driving me insane slowly but surely. I could hear that bastard diabetes snickering away over my shoulder every time I checked her blood sugar and was met with a ridiculously high number. I could feel it breathing it's foul breath all over the back of my neck. I could feel it's wrath...it's power...it's evil spirit trying to steal this day away from us. I could feel it trying to ruin her day and make her feel like crap. By dinner time I decided that diabetes and I were no longer on speaking terms. With each high number I just clenched my jaw and gave her a correction bolus. I increased everything across the board and did temp basals that were higher than any I have ever done before. There was no concern or room for playing it safe. There was no need to take baby steps and walk around on egg shells afraid that what I was doing would cause frightening lows later on. It was time to pull up my big girl panties and put on my diabetes boxing gloves. I did my best. I did what I could. I dug down deep and kept at it. I didn't give up. I didn't back down. I didn't cower and cry in the corner sobbing "why me? why us? whyyyy?" into my tear soaked hands. I sucked it up, gave it my all, and we survived. She survived and had a great day....pale faced...dark circles...and all. She made it. I made it. This was our 4th Christmas with diabetes....our 1st one on the pump...and we lived....we made it. Sure we didn't do it well...we didn't have ideal blood sugars at all the entire friggin day....but we did it. We slid into the final hours of this day by the skin of our teeth...battered and bruised...exhausted and spent...me with a few more gray hairs upon my head...her with a bit more exhaustion than normal and a bit more holes in her fingertips than normal....but we did it. We are fighters...we are stubborn beyond belief...we are tough...we are strong...we did it. Diabetes tried to take us out today....it tried VERY hard...but we lived to tell the tale...and for that I am truly greatful. Tomorrow is a new day as they say. The sun will rise again and the next round of this epic battle will begin...and we will win again...I can only hold onto the hope that tomorrow will be a tad bit easier on her little body. It was a good Christmas. Santa was good to us again. We spent the day together. We enjoyed the time together. We were a family....and that is what matters most to me...that is what I will think about as I lay my head down on my pillow tonight. Merry Christmas everyone!
Saturday, December 24, 2011
A trip to the hospital that I will NEVER forget
I've started to notice that the older Emma gets, the more she is thinking that Christmas is entirely about gifts and Santa Claus. I know that she is not a greedy or ungreatful kid...but I think that she is just bombarded with toys and gifts and toys and gimmie gimmie gimmie everywhere she turns. It's all over TV, it's talked about on the playground at school, it's the #1 question people ask her while out in public...what does she want? What did she ask Santa for this year? So, I decided that this year I wanted to teach her first hand that Christmas is not only about getting things and Santa. I wanted her to experience the true feeling of the Christmas spirit.
I thought of a few good ideas to spread some Christmas cheer, but then I realized that it would probably mean more to her if whatever we did was her idea...so I asked her what she would like to do...and she decided that she wanted to bring a bunch of stuffed animals and toys to the kids at the hospital. She said that she wanted to do something for them to make them smile because she thought that it would probably suck to wake up there on Christmas morning. I would have to agree with her. So, we headed out to the store after lunch and bought up a bunch of toys for the kids and went to the hospital. I had originally thought that we would just drop them off at the help desk in the lobby...mainly because I didn't want to disturb the families in the children's ward...I didn't want to interrupt their time together or make them feel like they had to lay on the praise and gratitude. I wanted Emma to see that the act of giving out of the kindness of your heart really doesn't have anything to do with getting praise for it...it's more about knowing in your own heart that you have done something to make someone else's day a little brighter. Anyway, we got there and the help desk was empty...the lights were off...no one in sight. So, we walked down the hallway to the children's wing and picked up the security phone to talk to the nurse on duty. I explained to her what we were doing there and her voice immediately became excited. She let us in and we were greeted with smiles all around us and Christmas decorations covering every open area. It was beautiful. The head nurse introduced herself and I explained to her that Emma is diabetic and we had spent a couple of days there last year when she was ill. I told her that they were some of the most incredible people I had ever met and I thanked them for being there for us when we needed them. Then Emma said to her that she had a bag full of toys and books for the kids there because she wanted to make them smile and she felt bad that they had to be in the hospital on Christmas of all days. She said that she wanted them to feel better and she wished that they all could be cured.
I looked up at the nurse's face as she talked with Emma and I saw tears in her eyes. I saw her getting it...I saw her seeing what I see when I look in Emma's eyes everyday...I saw her feeling the kindness and the sweet soul...I saw her looking at my daughter with complete and total happiness. It made me tear up actually. She thanked Emma over and over again and had her write down her address even so she could send Emma a thank you card. I told her that it was not necessary at all...we simply wanted to do this for the kids...but she insisted. Emma handed over the bag of goodies and we told the group of nurses around us thank you. I told them that I think they are angels on Earth for doing what they do...taking care of these kids...making their days bearable...working on Christmas and being away from their own families. I told them that I admire them and I think that they are truly special people. Emma told them that she hopes the kids like what she brought and that she heard that Santa stops at all of the hospitals first tonight. She thanked them for being good nurses and we said our goodbyes and left.
As we walked out of the children's wing doors, Emma grabbed my hand and I looked down at her smiling face. I've seen her smile countless times before in her life...but I've never seen a smile quite like the one I saw today. She said to me, "That made me REALLY happy, Mommy! I'm SO glad we did that!" Incredible. My eyes filled up with tears and I told her that I am very proud of her. I am so glad that she truly knows what the spirit of Christmas is about this year. I told her that she is a very special girl to want to make those sick children happy. I told her that she needs to remember how she feels in this moment in time and hold onto it forever. She needs to carry that feeling in her heart and truly believe that she is making a difference in this life...because she is. I told her that yes, it is nice to receive gifts and praise and greatfulness because she truly does deserve it....but she also must remember that feeling she has...that happiness she felt by handing over that bag of toys for those kids...because THAT is really what it is all about.
I am beyond happy that I got to experience this with her today. I am still smiling thinking about it. I am truly greatful for everything I have in my life...a home, food in my cupboards, clothes in my closet, a family that loves me, my health. I think most of all though...I am greatful for the chance to be her Mommy...and for the things she teaches me everyday...the love she shows me...the kindness, the good soul, the incredible spirit. She is my greatest gift and I would be lost without her.
Merry Christmas to you all!
I thought of a few good ideas to spread some Christmas cheer, but then I realized that it would probably mean more to her if whatever we did was her idea...so I asked her what she would like to do...and she decided that she wanted to bring a bunch of stuffed animals and toys to the kids at the hospital. She said that she wanted to do something for them to make them smile because she thought that it would probably suck to wake up there on Christmas morning. I would have to agree with her. So, we headed out to the store after lunch and bought up a bunch of toys for the kids and went to the hospital. I had originally thought that we would just drop them off at the help desk in the lobby...mainly because I didn't want to disturb the families in the children's ward...I didn't want to interrupt their time together or make them feel like they had to lay on the praise and gratitude. I wanted Emma to see that the act of giving out of the kindness of your heart really doesn't have anything to do with getting praise for it...it's more about knowing in your own heart that you have done something to make someone else's day a little brighter. Anyway, we got there and the help desk was empty...the lights were off...no one in sight. So, we walked down the hallway to the children's wing and picked up the security phone to talk to the nurse on duty. I explained to her what we were doing there and her voice immediately became excited. She let us in and we were greeted with smiles all around us and Christmas decorations covering every open area. It was beautiful. The head nurse introduced herself and I explained to her that Emma is diabetic and we had spent a couple of days there last year when she was ill. I told her that they were some of the most incredible people I had ever met and I thanked them for being there for us when we needed them. Then Emma said to her that she had a bag full of toys and books for the kids there because she wanted to make them smile and she felt bad that they had to be in the hospital on Christmas of all days. She said that she wanted them to feel better and she wished that they all could be cured.
I looked up at the nurse's face as she talked with Emma and I saw tears in her eyes. I saw her getting it...I saw her seeing what I see when I look in Emma's eyes everyday...I saw her feeling the kindness and the sweet soul...I saw her looking at my daughter with complete and total happiness. It made me tear up actually. She thanked Emma over and over again and had her write down her address even so she could send Emma a thank you card. I told her that it was not necessary at all...we simply wanted to do this for the kids...but she insisted. Emma handed over the bag of goodies and we told the group of nurses around us thank you. I told them that I think they are angels on Earth for doing what they do...taking care of these kids...making their days bearable...working on Christmas and being away from their own families. I told them that I admire them and I think that they are truly special people. Emma told them that she hopes the kids like what she brought and that she heard that Santa stops at all of the hospitals first tonight. She thanked them for being good nurses and we said our goodbyes and left.
As we walked out of the children's wing doors, Emma grabbed my hand and I looked down at her smiling face. I've seen her smile countless times before in her life...but I've never seen a smile quite like the one I saw today. She said to me, "That made me REALLY happy, Mommy! I'm SO glad we did that!" Incredible. My eyes filled up with tears and I told her that I am very proud of her. I am so glad that she truly knows what the spirit of Christmas is about this year. I told her that she is a very special girl to want to make those sick children happy. I told her that she needs to remember how she feels in this moment in time and hold onto it forever. She needs to carry that feeling in her heart and truly believe that she is making a difference in this life...because she is. I told her that yes, it is nice to receive gifts and praise and greatfulness because she truly does deserve it....but she also must remember that feeling she has...that happiness she felt by handing over that bag of toys for those kids...because THAT is really what it is all about.
I am beyond happy that I got to experience this with her today. I am still smiling thinking about it. I am truly greatful for everything I have in my life...a home, food in my cupboards, clothes in my closet, a family that loves me, my health. I think most of all though...I am greatful for the chance to be her Mommy...and for the things she teaches me everyday...the love she shows me...the kindness, the good soul, the incredible spirit. She is my greatest gift and I would be lost without her.
Merry Christmas to you all!
Friday, December 23, 2011
My wish
If I could have but one wish,
I would close my eyes and picture you
Shut out this loud and chaotic life,
silence the numbers in my mind.
I would let out a sigh of unbelievable weight
letting go of the worry and the hate.
Feel the Earth sway back and forth beneath my feet.
I would see the contours of your face
the beauty and wisdom that lies behind your eyes,
the smile upon your sweet lips,
the air of strength and knowing surrounding your grace.
I would muster up all the power of my time and
scream my wish out to the sky
no longer thoughts of why...oh why
instead an aching for goodbye
to throw it all above my head to float away with the breeze
gone up to the Heavens
leaving my shoulders with ease.
To live
to breathe
to love each moment and on
without the weight of the worry around
a new life is found.
I would close my eyes and picture you
Shut out this loud and chaotic life,
silence the numbers in my mind.
I would let out a sigh of unbelievable weight
letting go of the worry and the hate.
Feel the Earth sway back and forth beneath my feet.
I would see the contours of your face
the beauty and wisdom that lies behind your eyes,
the smile upon your sweet lips,
the air of strength and knowing surrounding your grace.
I would muster up all the power of my time and
scream my wish out to the sky
no longer thoughts of why...oh why
instead an aching for goodbye
to throw it all above my head to float away with the breeze
gone up to the Heavens
leaving my shoulders with ease.
To live
to breathe
to love each moment and on
without the weight of the worry around
a new life is found.
Thursday, December 22, 2011
Our diabetic path full of black ice
I like to joke around that Emma seems to do her best thinking while in the bath. She comes up with some crazy ideas, hilarious stories, and actually really profound things while sitting there playing around with her toys. I've started to realize that I seem to do my best thinking on my walks to and from Emma's school. Take today for example...I was walking along...ok more like inching (wait...I am in Canada...maybe it should be millimetering along? LOL) because we got tons of rain all day long yesterday and it all turned to ice overnight. The sun is shining and I knew that a lot of it had melted off already, but there were those evil little black ice patches lurking all around me...waiting for me to place my Airwalks on ever so precariously and just send me flying...ass over tea kettle (or whatever that saying is?!) My child is not a big fan of walking to school at all. She will complain about it at least twice everytime, she will ask me to carry her backpack for her because "it's TOO HEAVY" (she's in grade 2...I mean really, the child has no idea what a heavy backpack feels like), and add into the mix a couple of containers that I had to carry that were full of Italian Anise cookies I made for her class Christmas party, oh yes...and don't forget the ever present froggie face blood sugar meter bag and juice box. So, there I was loaded down with all of this stuff...trying to hold onto Emma's hand in case she slipped on the ice...and somehow managing to navigate the safest path possible for us up the hill to school. I started to think about how I could actually relate this particular walk to our life with diabetes. I know...I know...what can't you seem to find to relate to diabetes, Amy? I'm sure there are tons of things...but I only choose to share the diabetes related ones on here!
Anyhoo, I realized that while we live this diabetic life...we are constantly trying to navigate our way through unknown situations...circumstances that are beyond our control...just like trying to walk along a black ice riddled pathway. As the years go by, we tend to become very familiar with the path...we learn about the ins and outs of managing it, how our kiddos bodies react to certain things, and it seems to turn into a routine....just like walking along this familiar path to school...we know every crack in the sidewalk, every bump in the road, every house that we pass by. It's familiar and safe. It's comforting and normal for us. However, just like that black ice on the path...diabetes holds many uncertain and scary things. We are never fully in control of what is going on. We find out pretty quickly that there is no possible way to be 100% confident that we are doing the right thing and making the right decision when making insulin dose changes, guessing at carb counts, or even attempting to figure out how some every day occurance will affect blood sugars. I don't know about any of you reading this, but I resisted that in the beginning...I resisted having to accept the fact that no matter how hard I try...no matter how badly I want it...I can never have things be for certain in this life...I can never be fully confident in the decisions I make everyday. I resisted that and it ate away at me for a long time. We as people living with diabetes in our lives are forced to accept a life of unknown. It is thrust upon us...unwanted and unfairly...but we all must find a way to accept it and grab ahold of that unknown. We must grab it and find a way to live our lives in spite of it. We have become masters of living on the edge, going with the flow, taking each moment and each blood sugar as it comes. We have learned to live with the chaos and make it our own.
So, just as that pathway to school that is covered in black ice...our pathway of life with diabetes is now our own...familiar and normal...scary and uncertain...and it's simply ours.
Anyhoo, I realized that while we live this diabetic life...we are constantly trying to navigate our way through unknown situations...circumstances that are beyond our control...just like trying to walk along a black ice riddled pathway. As the years go by, we tend to become very familiar with the path...we learn about the ins and outs of managing it, how our kiddos bodies react to certain things, and it seems to turn into a routine....just like walking along this familiar path to school...we know every crack in the sidewalk, every bump in the road, every house that we pass by. It's familiar and safe. It's comforting and normal for us. However, just like that black ice on the path...diabetes holds many uncertain and scary things. We are never fully in control of what is going on. We find out pretty quickly that there is no possible way to be 100% confident that we are doing the right thing and making the right decision when making insulin dose changes, guessing at carb counts, or even attempting to figure out how some every day occurance will affect blood sugars. I don't know about any of you reading this, but I resisted that in the beginning...I resisted having to accept the fact that no matter how hard I try...no matter how badly I want it...I can never have things be for certain in this life...I can never be fully confident in the decisions I make everyday. I resisted that and it ate away at me for a long time. We as people living with diabetes in our lives are forced to accept a life of unknown. It is thrust upon us...unwanted and unfairly...but we all must find a way to accept it and grab ahold of that unknown. We must grab it and find a way to live our lives in spite of it. We have become masters of living on the edge, going with the flow, taking each moment and each blood sugar as it comes. We have learned to live with the chaos and make it our own.
So, just as that pathway to school that is covered in black ice...our pathway of life with diabetes is now our own...familiar and normal...scary and uncertain...and it's simply ours.
Wednesday, December 21, 2011
Choices on the playground
Yesterday Emma came home from school and told me that during afternoon recess she had decided to play with a couple of kindergarten friends of hers. I think it's adorable how much of a big sister type she is sometimes with little kids. She is not actually a big sister at all, but she most definitely would be an excellent one if I ever had another baby! Anyway, she was telling me that they had asked her about her diabetes. They wanted to know what her pump was and what diabetes meant and how come she had it but they didn't. She told me that she knew she had to explain it to them in words that they would understand and she found that a little bit difficult. She told them about the pancreas and how it helps their bodies use the sugar in them properly...and her pancreas just doesn't do that anymore because it is lazy. She told them that her pump helps her body do what it is supposed to do. She said that basically her pump is just like their pancreas. I was very proud of her for taking the time to talk to them and answer their questions as best she could. It got me thinking though, I wonder how many times a day she is reminded that she is diabetic. I mean of course she knows she is and I'm sure she thinks about it every time I have to check her BG or bolus her for food she eats. It's right in her face...it's attached to her all the time...how could she forget about it? Really though, I wonder how often she comes across other kids or even teachers during her day that ask her about it. I wonder if it is annoying to her. I wonder if it bothers her or makes her feel different? For the most part, I think that she is as ok as anyone could be with it really. I think that she likes talking about it with younger kids...it makes her feel special and important. I think that she likes showing them her infusion site and seeing their faces when she tells them that is where the insulin goes into her body...it makes her feel brave. However, I think if I was in her position...I would probably get really annoyed with it after awhile...always having to explain...to inform...to change people's perceptions of this disease. Actually I know that it is annoying...because in a way I do the same thing many days. I stand up and explain things to people who ask and to people who are misinformed. I try to set the record straight and dispell a lot of the myths and misconceptions out there about type 1 diabetes. I do it because I don't like knowing that there is so much ignorance and so much confusion out there between type 1 and type 2. I want people to know...I want them to ask me...I want them to show me that they honestly care enough to learn about it.
I think that it must be a huge responsibility for her though. To have to educate the public at 7 years old is a big deal. It's a grownup task. It's not something that she should have to do. So, while I am extremely proud of her for doing it...it hurts my heart a little as well. I wish she could just have kid thoughts running through her mind all the time. I wish these grownup thoughts could always be left to the grownups.It's incredible to me just how much diabetes affects every aspect of her life. It has forced her to grow up a lot faster than other kids her age. It has thrust her into the spotlight whether she likes it or not. It has made her feel different. It has made her feel alone. It has made her feel seperate. I hate that about diabetes. I hate how no matter how hard I try...it still gets in there and tries to mess with her day.
There is a line from the song "Timshel" by Mumford and Sons that I love. It goes, "...and you have your choices...and these are what make man great...his ladder to the stars." It really makes me realize that while, yes...diabetes does suck....it takes and takes and takes...it changes me...it changes her...it gets in the way, it forces her to live and think beyond her years.........it is really all about how we choose to handle things. It's about how we choose to react to a situation. How we choose to think and feel and respond. That is what makes us incredible people.....our ability to choose. So, yes it did hurt my heart a little to hear her tell me the story yesterday about her little impromptu education session on the playground. It also made me extremely proud though to know that she chose to react to the questions in a good way. She chose to try to help them and their curiosity...she chose to inform them...she chose to share a part of her life. I think above all else, that is a good thing....her ability to make that choice is part of what makes her great and will help her on her ladder to the stars.
I think that it must be a huge responsibility for her though. To have to educate the public at 7 years old is a big deal. It's a grownup task. It's not something that she should have to do. So, while I am extremely proud of her for doing it...it hurts my heart a little as well. I wish she could just have kid thoughts running through her mind all the time. I wish these grownup thoughts could always be left to the grownups.It's incredible to me just how much diabetes affects every aspect of her life. It has forced her to grow up a lot faster than other kids her age. It has thrust her into the spotlight whether she likes it or not. It has made her feel different. It has made her feel alone. It has made her feel seperate. I hate that about diabetes. I hate how no matter how hard I try...it still gets in there and tries to mess with her day.
There is a line from the song "Timshel" by Mumford and Sons that I love. It goes, "...and you have your choices...and these are what make man great...his ladder to the stars." It really makes me realize that while, yes...diabetes does suck....it takes and takes and takes...it changes me...it changes her...it gets in the way, it forces her to live and think beyond her years.........it is really all about how we choose to handle things. It's about how we choose to react to a situation. How we choose to think and feel and respond. That is what makes us incredible people.....our ability to choose. So, yes it did hurt my heart a little to hear her tell me the story yesterday about her little impromptu education session on the playground. It also made me extremely proud though to know that she chose to react to the questions in a good way. She chose to try to help them and their curiosity...she chose to inform them...she chose to share a part of her life. I think above all else, that is a good thing....her ability to make that choice is part of what makes her great and will help her on her ladder to the stars.
Tuesday, December 20, 2011
Sleep and night time blood sugar checks
She stalks her prey through the overgrown jungle...hair sticking to her sweaty forehead in matted clumps. She spots it up ahead and makes a run for it....only to be eluded once again....echoes of it's laughter pounding in her ears. Sleep....the always desired and forever unattainable prized win for a type 1 diabetic Mom.
I would have to say that hands down without a doubt sleep is one of the things I miss most about our life before diabetes. Sure I can sugar coat it, laugh about it, makes jokes about my diabetes induced narcolepsy....but it's still the same. I think i would give my left arm for a solid week of decent sleep. I say left arm of course because I am right-handed and need that hand to do site changes for Emma's insulin pump. Losing the right hand would just be silliness and awkward...couple that with exhaustion and we are looking at a whole mixed bag of disaster.
Anyhoo, one thing that has been talked about quite a few times over the years is the "middle of the night" BG checks that parents do for their kiddos. Some of us set our alarms and check throughout the night to make sure blood sugar numbers are behaving and staying where they should. Others of us do not check at night unless there has been some special activity that day or an illness is brewing. Some of us stay up as late as possible and check our kids to give us piece of mind before we head off to bed ourselves. There is no right or wrong method. We all do what works for us. We all follow our own set of rules and standards for night time blood sugar checks. Like I've said many times before, diabetes is in my opinion one of the most individualized diseases out there. What works for one, may not work for another. In fact what works for one....may not work with that same one even the following day!
In any case, there is one thing about this whole night time check that really bothers me to no end. It really grinds my gears. It is like the bee in my bonnet...if I were a bonnet wearing kind of girl! I will never understand why doctors and other members of the diabetes education teams that we all deal with, will so freely and easily and nonchalantly tell you that there is no reason to check at night. They meet a newly diagnosed family and mislead them in my opinion. They will tell them that they shouldn't become obsessive about checking...so therefore they shouldn't check at night unless there has been a problem or some unusual activity during the day. WHY? Why do they give them this false sense of security and comfort? Why do they not treat it as seriously as it should be treated? Why do they choose not to inform these families that the possiblity of something happening to their child while they sleep is there? Why do they not inform them? I mean I know they don't want to frighten them right off the bat I guess...but STILL! I am a FIRM believer in having absolutely all the information available to me...good or bad...so I can make an informed and educated decision as to what would work best for our family. To me, not sharing that info with them is the equivalent of saying "Well, yea your kid has diabetes...but only during the day...at night she's all good!" UGH!
I guess my whole point of this blog is that I wish the medical team would share ALL of the information about this disease with families so they are able to make a decision for themselves. I wish I had been told. The way I look at it is that I wouldn't go more than 6 hours without checking Emma's blood sugar during the day...so why would I at night? Again, entirely my opinion though and entirely the decision I have come to based on our own family and our own kid.
I would have to say that hands down without a doubt sleep is one of the things I miss most about our life before diabetes. Sure I can sugar coat it, laugh about it, makes jokes about my diabetes induced narcolepsy....but it's still the same. I think i would give my left arm for a solid week of decent sleep. I say left arm of course because I am right-handed and need that hand to do site changes for Emma's insulin pump. Losing the right hand would just be silliness and awkward...couple that with exhaustion and we are looking at a whole mixed bag of disaster.
Anyhoo, one thing that has been talked about quite a few times over the years is the "middle of the night" BG checks that parents do for their kiddos. Some of us set our alarms and check throughout the night to make sure blood sugar numbers are behaving and staying where they should. Others of us do not check at night unless there has been some special activity that day or an illness is brewing. Some of us stay up as late as possible and check our kids to give us piece of mind before we head off to bed ourselves. There is no right or wrong method. We all do what works for us. We all follow our own set of rules and standards for night time blood sugar checks. Like I've said many times before, diabetes is in my opinion one of the most individualized diseases out there. What works for one, may not work for another. In fact what works for one....may not work with that same one even the following day!
In any case, there is one thing about this whole night time check that really bothers me to no end. It really grinds my gears. It is like the bee in my bonnet...if I were a bonnet wearing kind of girl! I will never understand why doctors and other members of the diabetes education teams that we all deal with, will so freely and easily and nonchalantly tell you that there is no reason to check at night. They meet a newly diagnosed family and mislead them in my opinion. They will tell them that they shouldn't become obsessive about checking...so therefore they shouldn't check at night unless there has been a problem or some unusual activity during the day. WHY? Why do they give them this false sense of security and comfort? Why do they not treat it as seriously as it should be treated? Why do they choose not to inform these families that the possiblity of something happening to their child while they sleep is there? Why do they not inform them? I mean I know they don't want to frighten them right off the bat I guess...but STILL! I am a FIRM believer in having absolutely all the information available to me...good or bad...so I can make an informed and educated decision as to what would work best for our family. To me, not sharing that info with them is the equivalent of saying "Well, yea your kid has diabetes...but only during the day...at night she's all good!" UGH!
I guess my whole point of this blog is that I wish the medical team would share ALL of the information about this disease with families so they are able to make a decision for themselves. I wish I had been told. The way I look at it is that I wouldn't go more than 6 hours without checking Emma's blood sugar during the day...so why would I at night? Again, entirely my opinion though and entirely the decision I have come to based on our own family and our own kid.
Monday, December 19, 2011
A letter to my 16 year old self
I came across a video posted online a while ago that really resonated with me. It was basically a bunch of people speaking to the 16 year old versions of themselves before the were diagnosed with cancer. I thought I would do a little spin-off of it and write a letter to the 16 year old version of myself. Just a side note though to say that I am in no way shape or form comparing my life as the parent of a type 1 diabetic to that of someone with cancer. It is a completely different life. Total opposite ends of the spectrum. So I mean no disrespect to any who may come across this that are living with cancer affecting their lives somehow.
Dear 16 year old Amy,
I know that you think you have all the answers right now, but let me assure you that you haven't got a clue. That boy you like and would do absolutely anything for? Well, he will turn out to change your life in a whole new direction. Yes, many good things will come from it...but so will heartache. You will feel like your world is ending and that no one could possibly understand the things that are going on in your head. You shouldn't spend so much time concerning yourself with what others think of you. Don't put so much value and importance on their opinion. You have this thought stuck in your head that you aren't pretty enough...not smart enough...not funny enough...not cool enough. One day you will realize that none of those things matter. You shouldn't get so upset and angry at your parents and think that they are being too hard on you and too strict with you. You shouldn't compare them to your friend's parents...because they are not your friends parents...they are YOUR parents. They do the things they do and they may seem strict with you because the love you. They love you with every fiber of their being and they want to protect you...so cut them some slack. One day you will meet the love of your life by a one in a million chance occurance. You will move to another country to be with him and you will feel like you are home...like you belong. One day you will marry this man. One day you will get to experience the most beautiful thing on the planet...you will become a Mommy. One day you will hold your tiny baby girl in your arms and stare into her gorgeous innocent eyes and you will know what true love feels like. It will all come crashing down on you at once. You will look at her little round face, see her chest rise and fall with each sweet breath she takes, listen to her strong heart beat a perfect rhythm from within...and you will know. You will understand why your parents did all of the things they did. You will get it. One day you will find yourself sitting in a small little hospital room, holding your 4 year old little girl on your lap, trembling with fear, heart racing, feeling like you are slipping over the edge. One day a doctor you have never met before then will walk into that room and tell you very abruptly that your sweet precious angel has type 1 diabetes. You will want to run...you will want to scoop her up and bolt from that room and curse the doctor on your way out. You will want to leave those awful words behind and pretend like they were never uttered. One day you will look in your daughter's beautiful brown eyes...you will stare at her tear streaked cheeks...and you will have to make a choice. You will find the strength from deep within. You will find it because you wil be holding it in your arms. She is your strength. She is your reason for being. She is your heart. There will be countless days where you will feel like you just can't do it anymore. Days where it will seem like the tears just won't stop falling. Days where you will look at your friend's children, kids at the park, classmates of your child...and you will feel a deep burning jealousy. You will envy their seemingly easy life. You need to remember that they do not have easy lives either. You need to remember that everyone has to carry their own burden in this life. You need to wash away that jealousy with compassion and understanding. You will feel exhausted on a daily basis because you will have to stay up and get up all hours of the night to check your daugter's blood sugar to ensure her safety. You will be afraid to sleep at night because you will be afraid that she will die. One day you will meet some amazing friends who also have diabetes living with them. You will feel an instant bond with them and you will now be a part of a new unbreakable family. Don't be shy or scared to talk to them. Don't worry about what they will think of you. Don't be afraid to open up and let it all out...because they know....they get it...because they live it too.
So, enjoy your time while you have it. Enjoy your days and enjoy your nights. Sleep longer, smile more, laugh more, be more carefree. Make it a point every single day to tell someone that you love them and tell them how much they mean to you. Have confidence in yourself and your abilities. Believe in yourself...because as I sit here today...18 years down the road from where you are now...I am telling you that you will experience some of the most beautiful, awe-inspiring, incredible things in life. There is much in store for you and you will deal with it and learn from it and enjoy it so much more if you choose to believe in yourself right now.
Take care of yourself and remember that I love you always,
Amy
P.S. It might be a good idea to not go joy-riding on the highway 3 months after you get your license....just trust me on that one...:o)
Dear 16 year old Amy,
I know that you think you have all the answers right now, but let me assure you that you haven't got a clue. That boy you like and would do absolutely anything for? Well, he will turn out to change your life in a whole new direction. Yes, many good things will come from it...but so will heartache. You will feel like your world is ending and that no one could possibly understand the things that are going on in your head. You shouldn't spend so much time concerning yourself with what others think of you. Don't put so much value and importance on their opinion. You have this thought stuck in your head that you aren't pretty enough...not smart enough...not funny enough...not cool enough. One day you will realize that none of those things matter. You shouldn't get so upset and angry at your parents and think that they are being too hard on you and too strict with you. You shouldn't compare them to your friend's parents...because they are not your friends parents...they are YOUR parents. They do the things they do and they may seem strict with you because the love you. They love you with every fiber of their being and they want to protect you...so cut them some slack. One day you will meet the love of your life by a one in a million chance occurance. You will move to another country to be with him and you will feel like you are home...like you belong. One day you will marry this man. One day you will get to experience the most beautiful thing on the planet...you will become a Mommy. One day you will hold your tiny baby girl in your arms and stare into her gorgeous innocent eyes and you will know what true love feels like. It will all come crashing down on you at once. You will look at her little round face, see her chest rise and fall with each sweet breath she takes, listen to her strong heart beat a perfect rhythm from within...and you will know. You will understand why your parents did all of the things they did. You will get it. One day you will find yourself sitting in a small little hospital room, holding your 4 year old little girl on your lap, trembling with fear, heart racing, feeling like you are slipping over the edge. One day a doctor you have never met before then will walk into that room and tell you very abruptly that your sweet precious angel has type 1 diabetes. You will want to run...you will want to scoop her up and bolt from that room and curse the doctor on your way out. You will want to leave those awful words behind and pretend like they were never uttered. One day you will look in your daughter's beautiful brown eyes...you will stare at her tear streaked cheeks...and you will have to make a choice. You will find the strength from deep within. You will find it because you wil be holding it in your arms. She is your strength. She is your reason for being. She is your heart. There will be countless days where you will feel like you just can't do it anymore. Days where it will seem like the tears just won't stop falling. Days where you will look at your friend's children, kids at the park, classmates of your child...and you will feel a deep burning jealousy. You will envy their seemingly easy life. You need to remember that they do not have easy lives either. You need to remember that everyone has to carry their own burden in this life. You need to wash away that jealousy with compassion and understanding. You will feel exhausted on a daily basis because you will have to stay up and get up all hours of the night to check your daugter's blood sugar to ensure her safety. You will be afraid to sleep at night because you will be afraid that she will die. One day you will meet some amazing friends who also have diabetes living with them. You will feel an instant bond with them and you will now be a part of a new unbreakable family. Don't be shy or scared to talk to them. Don't worry about what they will think of you. Don't be afraid to open up and let it all out...because they know....they get it...because they live it too.
So, enjoy your time while you have it. Enjoy your days and enjoy your nights. Sleep longer, smile more, laugh more, be more carefree. Make it a point every single day to tell someone that you love them and tell them how much they mean to you. Have confidence in yourself and your abilities. Believe in yourself...because as I sit here today...18 years down the road from where you are now...I am telling you that you will experience some of the most beautiful, awe-inspiring, incredible things in life. There is much in store for you and you will deal with it and learn from it and enjoy it so much more if you choose to believe in yourself right now.
Take care of yourself and remember that I love you always,
Amy
P.S. It might be a good idea to not go joy-riding on the highway 3 months after you get your license....just trust me on that one...:o)
Sunday, December 18, 2011
And the winner of my giveaway is............
And the winner is........Nicole from We Cara Lot Blog!! Emma picked her name out of a pile this afternoon! Congratulations Nicole! Please email me your address and I will get your prize package shipped out to you ASAP :o)
sky0138@yahoo.com
Thanks to all who commented and I hope to do something like this again soon!
sky0138@yahoo.com
Thanks to all who commented and I hope to do something like this again soon!
My own worst enemy
Sometimes I feel like there's a little demon living inside my head.
Taunting me
Yelling at me
Screaming at me that I am not good enough.
Sometimes I feel like it thrives off of my anguish
Grows strength from stealing my confidence.
Leaving me to wither away
waiting for that cool breeze to pass by
lift me off my place of rest and send me sailing away
Sometimes it feels like I'm lost
broken and scared
doubtful and frozen in that moment of time
the clock ticking by marking each individual moment of madness
Sometimes I feel like that little demon is right
I'm not good enough
I can't do this
I will fail
I can't keep pretending
It's screams of failure piercing through my brain like a million tiny bolts of lightening
I'm only one person
I can't do this.
I'm scared
Sometimes I feel like it's not fair
like it is going to consume me
the waters will slowly rise
and I will be pulled under
floating down to the sands alone
staring up at the light above
weak and exhausted
Sometimes I feel like it is getting the best of me
It is stealing me
taking away every single thing that is good about me
grasping it in it's evil little hands
squeezing the good out and running all around me cackling with insanity
and then i realize that the demon is simply me....
doubting, taunting, mocking, stealing the good, screaming thoughts of failure...
it's me...
it's only me...
I'm my own worst enemy
Taunting me
Yelling at me
Screaming at me that I am not good enough.
Sometimes I feel like it thrives off of my anguish
Grows strength from stealing my confidence.
Leaving me to wither away
waiting for that cool breeze to pass by
lift me off my place of rest and send me sailing away
Sometimes it feels like I'm lost
broken and scared
doubtful and frozen in that moment of time
the clock ticking by marking each individual moment of madness
Sometimes I feel like that little demon is right
I'm not good enough
I can't do this
I will fail
I can't keep pretending
It's screams of failure piercing through my brain like a million tiny bolts of lightening
I'm only one person
I can't do this.
I'm scared
Sometimes I feel like it's not fair
like it is going to consume me
the waters will slowly rise
and I will be pulled under
floating down to the sands alone
staring up at the light above
weak and exhausted
Sometimes I feel like it is getting the best of me
It is stealing me
taking away every single thing that is good about me
grasping it in it's evil little hands
squeezing the good out and running all around me cackling with insanity
and then i realize that the demon is simply me....
doubting, taunting, mocking, stealing the good, screaming thoughts of failure...
it's me...
it's only me...
I'm my own worst enemy
Saturday, December 17, 2011
My Light and My Family
Diabetes is by no means a black and white, cut and dry, true or false disease. There is no manual stating that if "x" happens...then do "y" and "z". There is nothing for certain...nothing set in stone...nothing that we can rely on 100% of the time. We as members of the diabetes family are forced to live in the gray area of life. Like it or not, we are made to guess on things that could affect the health and well-being of our child or ourselves if we are the ones that are diabetic. We walk around on a daily basis living in that foggy, blurry, uncertain land in the middle. Sure, as the days turn into weeks, the weeks into months, and the months into years...we are able to recognize patterns in how our bodies behave. We are able to guess with a little more confidence. We are able to make the more bolder moves and choose one of the options we are given with a bit more ease than in the beginning. That being said though, diabetes is still not a cut and dry disease. Things happen for no apparent reason. Wacky high blood sugars appear on our meters...mocking us...taunting us...making us feel like failures and leaving us sitting there scratching our heads and wondering where we went wrong. Diabetes is a fickle bastard sometimes and we are forced to just ride it out and deal with things as they are thrown at us. It's not fair, none of us asked for this life, all of us would trade places with our kiddos and take this disease from them in a heartbeat I am sure...but we can't. So here we sit, living in the grayness. Fortunately for all of us though there is one bright shining beacon of light breaking through that gray fog. We have each other. We have other D-Mom's all across the globe that are there for us. They are there to offer advice, give support, comfort us, and help dry our tears. We are all part of the same family now. I look around on Facebook (watched an amazing video tonight actually about this) and see pictures of my fellow D-Mom's and Dad's T1 kids. I read posts that their parents share about things they have accomplished, things they have done, things that make me laugh, things that make me cry. I look at the pictures of their sweet little faces and I see my own daughter. I see the bravery and the endurance that is needed to live this life. I see it and I am in awe of it. I am in awe of them. When I read about another T1 kiddo struggling with depression from this disease, my heart aches...I want to scoop him up in my arms and comfort him...dry his tears and make it all better. I want to hug his Mom and make it easier for her. When I see videos of a newly pumping little girl getting a site change, my heart swells with pride as I see her enduring this pain...and sharing her experience with the world and helping others trying to decide if the pump is right for them. I want to hug her Mom and look her in the eyes and let her know that I think she is amazing. I want her to know that her and her sweet girl are my heroes. When I read about another T1 kiddo trying out wearing a CGM (continuous glucose monitor) because he has had more than enough seizures from low blood sugars while he sleeps because his body will not wake him up to the low in time to drink juice and attempt to fix it, my eyes well up with tears. I want to give his Mom a hug and send her off to a nice quiet bedroom to sleep for as long as she needs to...and let me keep watch on his blood sugars and stay up all night to ensure he doesn't have another one. I want to help them. I want to fix it.
So here we all are shining on. Letting our light flow out into the gray befuddled mess that is our life. Our shared life. If you ever need my light to help you see clearly once again...I hope you know that I will always shine it your way...and I know you would do the same...because we are a family...and that's what families do.
So here we all are shining on. Letting our light flow out into the gray befuddled mess that is our life. Our shared life. If you ever need my light to help you see clearly once again...I hope you know that I will always shine it your way...and I know you would do the same...because we are a family...and that's what families do.
Thursday, December 15, 2011
A quick poem for the DOC
We live, we love
we laugh, we cry
we hold our hands up to the sky.
we stumble and fall upon our knees
we huddle in the corner softly crying pleas
we walk, we ride
we share our story
it's a daily battle to focus on the glory
we are made of something special you see
for this life...well, it was meant to be
a strength, a drive
courage and bravery alive
soul and spirit abound
heart big enough to hold love for all around
we soldier on along our path
injecting, bolusing, doing the math
we support, we encourage, we are the glue
that holds this enormous d-family together it's true
we are the DOC, our colour is blue
we're millions alone...coming together as one
we will beat this...we will one day proclaim
that we have won!
we laugh, we cry
we hold our hands up to the sky.
we stumble and fall upon our knees
we huddle in the corner softly crying pleas
we walk, we ride
we share our story
it's a daily battle to focus on the glory
we are made of something special you see
for this life...well, it was meant to be
a strength, a drive
courage and bravery alive
soul and spirit abound
heart big enough to hold love for all around
we soldier on along our path
injecting, bolusing, doing the math
we support, we encourage, we are the glue
that holds this enormous d-family together it's true
we are the DOC, our colour is blue
we're millions alone...coming together as one
we will beat this...we will one day proclaim
that we have won!
Wednesday, December 14, 2011
Forgive those that trespass against us...
Pretty much since the beginning of the school year, Emma has been dealing with some bullying type behaviors from others. She has come home to tell me many different things that occured during the day that ranged from a boy hitting her and yelling in her ear....to the next day telling her that he loves her and trying to kiss her (yea, i'm thinking he has a crush on her). Other things like a boy in another class finding out that she is diabetic and basically running all around her and acting scared that he was going to catch diabetes from her if he touched her. She handled that one excellently by laughing at his ignorance and telling him that diabetes is not contagious. She has dealt with the usual highs and lows in blood sugars that take time out of her day and draw attention to her...remind her of her diabetes. In fact, just the other day while we were out Christmas shopping at the mall, she gave me the old familiar, "Mommy, I think I'm low." and we paused in the middle of the mall to test and find out. As I knelt down and pulled out her meter bag and got everything together, she stood over me...eyes darting about...looking all around us. She said to me, "Mommy, you know what I hate about being low in stores? I hate when we have to test my finger and people stare. I hate how they walk by really slow and stare at me."
.......words from her mouth that felt like a punch to the gut for me....the look in her eyes made my own eyes instantly start leaking....
It was really the first time she has ever expressed just how much this disease affects her. Maybe she has never mentioned it before because she was younger...and we all know that littler kids tend to not care about that sort of thing. They just want the act of testing done and over with so they can continue on about their game of skipping through the mall and playing I Spy. Now that she is 7, I am slowly starting to see a shift in her thinking...a shift in her way of processing this life. It honestly scares me. Her ability to handle things at 7 years old is astounding to me. The one boy who was hitting her at school and yelling in her ear on one particular day was obviously reprimanded. Well, today Emma's school attended mass at the church to celebrate advent. Of course one of the prayers they recited was "Our Father"....I'm sure even if you are not Catholic, you have probably heard it at some point in your life. Well, as we were leaving the church, she said to me, "Mommy, when we got to the part about 'forgive those that trespass against us...' I thought of (the bully boy)...and I decided to forgive him. How in the world does a 7 year old have the capacity to relate something like that to her own life and have the ability to recognize it and act on it. Amazing.
From the get go with diabetes, I have never been one to hide it...if we are out in public and need to test...we just do it. If we need to bolus or give injections...we just do it. I have never been a fan of hiding it or making it into a secretive thing for her...I have never wanted her to feel ashamed of it or somehow different because of it.
So, once the low at the mall was treated...I hugged her...I looked her straight in the eyes and told her that it was ok to feel how she was feeling. I told her that the reason why people stare is because it is probably not something they are used to seeing...such a little girl having to squeeze blood from her finger. I told her that possibly they were staring to see what the heck the meter actually was...possibly a new kind of phone or mp3 player? I told her that it honestly doesn't really matter why they are staring...what really matters is how she perceives it and how she chooses to handle it. I told her that the only person in life that she will ever have any kind of control over...is herself. So, in my opinion...in order for her to be happy...I thought that she should take it as an opportunity to educate people...a chance to let them see it...see what a meter looks like...see her test...see what she has to do in order to be healthy. Education of any form is never a bad thing.
We left the mall that day with her smiling, holding my hand, and skipping through the parking lot. I fell asleep that night knowing that we had won yet another battle with diabetes. We came out on top. I hope she knows that I will always be in her corner of the ring helping her fight these battles and cheering her on for the battles she must fight alone.
.......words from her mouth that felt like a punch to the gut for me....the look in her eyes made my own eyes instantly start leaking....
It was really the first time she has ever expressed just how much this disease affects her. Maybe she has never mentioned it before because she was younger...and we all know that littler kids tend to not care about that sort of thing. They just want the act of testing done and over with so they can continue on about their game of skipping through the mall and playing I Spy. Now that she is 7, I am slowly starting to see a shift in her thinking...a shift in her way of processing this life. It honestly scares me. Her ability to handle things at 7 years old is astounding to me. The one boy who was hitting her at school and yelling in her ear on one particular day was obviously reprimanded. Well, today Emma's school attended mass at the church to celebrate advent. Of course one of the prayers they recited was "Our Father"....I'm sure even if you are not Catholic, you have probably heard it at some point in your life. Well, as we were leaving the church, she said to me, "Mommy, when we got to the part about 'forgive those that trespass against us...' I thought of (the bully boy)...and I decided to forgive him. How in the world does a 7 year old have the capacity to relate something like that to her own life and have the ability to recognize it and act on it. Amazing.
From the get go with diabetes, I have never been one to hide it...if we are out in public and need to test...we just do it. If we need to bolus or give injections...we just do it. I have never been a fan of hiding it or making it into a secretive thing for her...I have never wanted her to feel ashamed of it or somehow different because of it.
So, once the low at the mall was treated...I hugged her...I looked her straight in the eyes and told her that it was ok to feel how she was feeling. I told her that the reason why people stare is because it is probably not something they are used to seeing...such a little girl having to squeeze blood from her finger. I told her that possibly they were staring to see what the heck the meter actually was...possibly a new kind of phone or mp3 player? I told her that it honestly doesn't really matter why they are staring...what really matters is how she perceives it and how she chooses to handle it. I told her that the only person in life that she will ever have any kind of control over...is herself. So, in my opinion...in order for her to be happy...I thought that she should take it as an opportunity to educate people...a chance to let them see it...see what a meter looks like...see her test...see what she has to do in order to be healthy. Education of any form is never a bad thing.
We left the mall that day with her smiling, holding my hand, and skipping through the parking lot. I fell asleep that night knowing that we had won yet another battle with diabetes. We came out on top. I hope she knows that I will always be in her corner of the ring helping her fight these battles and cheering her on for the battles she must fight alone.
Tuesday, December 13, 2011
My first prize giveaway!
Ok, so I have been thinking...when Emma was diagnosed over 3 years ago...I was lost. I was scared. I was completely overwhelmed and I had no confidence in my abilities to take care of her and keep her alive at all. I somehow muddled through and managed to survive every day...sometimes with style...but more often than not, hanging by a thread. I was fortunate enough to discover the DOC (diabetes online community) and you all saved me. You saved me from drowning in my sorrows alone. You gave me advice. You lifted me up and made me feel like I could do this. You gave me that confidence when I couldn't seem to find it within myself. You cheered me on. You rejoiced in our accomplishments. You supported us in our fundraising efforts. You cried with me in our failures. You consoled me through my unending tears.
You were there for us. You are still there for us. You will always be there for us. You welcomed us into your family with open arms. You have shown me that incredible bond that exists between fellow D-Mom's and Dad's. We have a bond between us that s stronger than any blood relation. We are a group of random, funny, brilliant, caring, kind hearted, and supportive people who live all over the world. Most of us have never met in person...and yet we would all do absolutely anything within our power to help each other.
You have shown me the magnitude of your support once again this month by sharing and reposting links to my blog and offering comments that have put a smile on my face and made me feel less alone in this world. You have read one particular post of mine over 800 times. I am beyond greatful. So, as a small and yet heartfelt token of my gratitude for all that you do....I would like to offer up a prize giveaway. I would like to give away a signed copy of my book and a special D-Momma survival kit that I have come up with...:o)...filled with a few things that will make those late nights (and early mornings) filled with BG checks a little more bearable. It's not much, but it comes from my heart.
If you are interested in winning the prize, please leave a comment here and on Sunday, the 18th at noon...I will have Emma randomly select the winner the old fashioned way...pulling a number out of a hat! Good luck and thank you all! <3
You were there for us. You are still there for us. You will always be there for us. You welcomed us into your family with open arms. You have shown me that incredible bond that exists between fellow D-Mom's and Dad's. We have a bond between us that s stronger than any blood relation. We are a group of random, funny, brilliant, caring, kind hearted, and supportive people who live all over the world. Most of us have never met in person...and yet we would all do absolutely anything within our power to help each other.
You have shown me the magnitude of your support once again this month by sharing and reposting links to my blog and offering comments that have put a smile on my face and made me feel less alone in this world. You have read one particular post of mine over 800 times. I am beyond greatful. So, as a small and yet heartfelt token of my gratitude for all that you do....I would like to offer up a prize giveaway. I would like to give away a signed copy of my book and a special D-Momma survival kit that I have come up with...:o)...filled with a few things that will make those late nights (and early mornings) filled with BG checks a little more bearable. It's not much, but it comes from my heart.
If you are interested in winning the prize, please leave a comment here and on Sunday, the 18th at noon...I will have Emma randomly select the winner the old fashioned way...pulling a number out of a hat! Good luck and thank you all! <3
Monday, December 12, 2011
Trust
We've been struggling with high blood sugars lately and the only thing I can attribute it to is a growth spurt. I decided to quit beating around the bush and increased all of her basal rates across the board today. Hoping that it does the trick, because I can feel it wearing me down. Every time I look at Emma and see the dark circles under her eyes, I feel the guilt...I feel the anger at diabetes..I feel the frustration full force.
I can only imagine what it feels like to her..what it does to her emotions...how it must be horrible to walk around feeling ill when you really are not ill...and know that it is all because your Mom is having a hard time figuring things out lately. It must be such an odd feeling to be a small child with type 1 diabetes. Your life is literally in the hands of another person every single day. Granted usually it is the person(s) that you trust more than anyone else on the planet...but still it must seem so weird to know that they have complete and total control over your blood sugars. They push the buttons on your pump, they give you injections, they check your blood sugar, and they count carbs. Yes, now that Emma is 7...she does manage a lot of things herself. I am able to count on her to check her own blood sugar at school or at home if I am busy. I have complete confidence in her bolusing herself for snacks at school or once again at home if I am busy putting the food on plates. I can count on her to recognize her lows around 4 out of 5 times now. She is learning how to read nutrition labels. She is asking questions. She is curious. She is smart. I haven't yet figured out how to explain the whole concept of when to adjust basal rates or insulin carb ratios yet..but in time that will happen.
When she was first diagnosed (4 years old)...it was all me. I handled everything. It most definitely got me wondering about how she perceived her diabetes. How was she capable of just handing all of that trust over? The whole burden and worry of this disease falls squarely on another person's shoulders with little ones. I can honestly say that I don't think there is another person on the planet that I would fully and completely trust with my life in that way. How do kids make it seem so easy...so simple..such a basic and normal thing? How do they hand over their life and their well-being just like that? It's something I've thought about for years now and it really does blow me away how deeply...how honestly...how whole-heartedly a child is able to trust. It's incredible really. Imagine what kind of a place the world would be if we could all have that ability and not take advantage of it in others.
Kids begin life innocent and trusting and accepting. I wish we as adults didn't somehow seem to always lose a lot of that along the way of growing up.
I can only imagine what it feels like to her..what it does to her emotions...how it must be horrible to walk around feeling ill when you really are not ill...and know that it is all because your Mom is having a hard time figuring things out lately. It must be such an odd feeling to be a small child with type 1 diabetes. Your life is literally in the hands of another person every single day. Granted usually it is the person(s) that you trust more than anyone else on the planet...but still it must seem so weird to know that they have complete and total control over your blood sugars. They push the buttons on your pump, they give you injections, they check your blood sugar, and they count carbs. Yes, now that Emma is 7...she does manage a lot of things herself. I am able to count on her to check her own blood sugar at school or at home if I am busy. I have complete confidence in her bolusing herself for snacks at school or once again at home if I am busy putting the food on plates. I can count on her to recognize her lows around 4 out of 5 times now. She is learning how to read nutrition labels. She is asking questions. She is curious. She is smart. I haven't yet figured out how to explain the whole concept of when to adjust basal rates or insulin carb ratios yet..but in time that will happen.
When she was first diagnosed (4 years old)...it was all me. I handled everything. It most definitely got me wondering about how she perceived her diabetes. How was she capable of just handing all of that trust over? The whole burden and worry of this disease falls squarely on another person's shoulders with little ones. I can honestly say that I don't think there is another person on the planet that I would fully and completely trust with my life in that way. How do kids make it seem so easy...so simple..such a basic and normal thing? How do they hand over their life and their well-being just like that? It's something I've thought about for years now and it really does blow me away how deeply...how honestly...how whole-heartedly a child is able to trust. It's incredible really. Imagine what kind of a place the world would be if we could all have that ability and not take advantage of it in others.
Kids begin life innocent and trusting and accepting. I wish we as adults didn't somehow seem to always lose a lot of that along the way of growing up.
Sunday, December 11, 2011
A Shooting Star
If I was a star shooting across the sky
I would leave a trail of loving light behind
the glowing dust raining down
landing on your shoulders, your hair, all around.
Warming your heart, your body, your mind
I would kiss your eyelids with a sigh.
If I was a star shooting across the sky
I would shine from the Heavens simply for your eyes.
If you happened to wish upon my light,
I would listen to every last one and hold them tight.
doing my best to bring them true,
leaving you with a hope that is new.
If I was a star shooting across the sky
I would reach down through the night
and lift your spirits high.
I would warm your face and dry your tears
whisper strength in your ears,
comforting you through all your fears
If I was a star shooting across the sky
I would leave you breathless with my drive.
full of wonder, hope, and a bond like no other
I would lift you up
to soar,
one another.
I would leave a trail of loving light behind
the glowing dust raining down
landing on your shoulders, your hair, all around.
Warming your heart, your body, your mind
I would kiss your eyelids with a sigh.
If I was a star shooting across the sky
I would shine from the Heavens simply for your eyes.
If you happened to wish upon my light,
I would listen to every last one and hold them tight.
doing my best to bring them true,
leaving you with a hope that is new.
If I was a star shooting across the sky
I would reach down through the night
and lift your spirits high.
I would warm your face and dry your tears
whisper strength in your ears,
comforting you through all your fears
If I was a star shooting across the sky
I would leave you breathless with my drive.
full of wonder, hope, and a bond like no other
I would lift you up
to soar,
one another.
Friday, December 9, 2011
I just can't do this anymore
Just a warning that this post is not very happy...it's been a crap couple of days to say the least when it comes to diabetes...and I just needed to get this out.
Sometimes I just need a break. I am so overwhelmed with the numbers swirling around my head it feels like a hurricane threatening to take over my entire brain. Highs and lows and carbs and the clock. It's literally driving me insane. I sit here in the hallway of Emma's school waiting for a low blood sugar to come back up so I can feel some shred of confidence that she will be ok for the rest of the afternoon. It's madness. It makes me physically ill. It makes my heart hurt. This diabetic life is so completely insane sometimes that I wish there was some way to make others understand just how close to the brink we as D-parents are. We walk around out in public...grocery shopping, Christmas shopping, taking our kids to different activities...and we are teetering on that tightrope high above the center ring of this whole friggin circus. That's exactly what a diabetic life is like actually....a three ring friggin circus. I sometimes feel like I have that balance bar under control in my hands...I'm confident...strutting across that rope to the other side with style. Other times....like right now...I feel like I am wavering back and forth slipping off...hanging on by my toes for dear life. I feel like there really is no point in me ever feeling like I can do this...I am only fooling myself. Who am I kidding? I am not the one in control of the blood sugars...DIABETES is!! I can fool myself day after day into thinking I am the one making the decisions...I am the one fighting this...I am the one who is going to prevail in the end. But, really....on days like today....I have my doubts. I am utterly exhausted...sick of it all. We've put in our time...we've done this for 3 1/2 YEARS now...that is LONG enough! I just can't do it anymore...I can't get those panicked phone calls on my cell phone in the middle of the school day...I can't try to educate a substitute teacher about type 1 diabetes and the signs of a low in a matter of minutes first thing in the morning. I can't expect her to know what to look for...i can't expect her to know what to do! I just can't do this anymore! How in the world can someone be expected to function like a normal human being on 5 hours of sleep a night? How can I keep doing this day after friggin day...over and over again...until a cure is found? It's a never ending vicious cycle and I am having the hardest time focusing on finding that light at the end of the tunnel at the moment. I see people out in stores Christmas shopping...laughing, talking, holding hands with their kids and I am jealous...I HATE being jealous! I hate knowing that I am standing in a room full of people and I feel like I am all alone...I'm all alone in my torment and my worry and my anger and my frustration and my exhaustion...I'm all alone and I'm screaming on the inside...screaming at the top of my lungs that I need this to be over...screaming that I am DONE...I just can't keep on living this way...I just can't keep on keeping on anymore...I just can't keep this damn smile plastered on my face anymore...i just can't keep pretending like I am OK anymore...I'm screaming...and yet all that is coming out of my mouth is a meak little whisper...a single tear is falling from my eye and leaving a bitter and sad lonely trail down my cheek. I am so tired.
Sometimes I just need a break. I am so overwhelmed with the numbers swirling around my head it feels like a hurricane threatening to take over my entire brain. Highs and lows and carbs and the clock. It's literally driving me insane. I sit here in the hallway of Emma's school waiting for a low blood sugar to come back up so I can feel some shred of confidence that she will be ok for the rest of the afternoon. It's madness. It makes me physically ill. It makes my heart hurt. This diabetic life is so completely insane sometimes that I wish there was some way to make others understand just how close to the brink we as D-parents are. We walk around out in public...grocery shopping, Christmas shopping, taking our kids to different activities...and we are teetering on that tightrope high above the center ring of this whole friggin circus. That's exactly what a diabetic life is like actually....a three ring friggin circus. I sometimes feel like I have that balance bar under control in my hands...I'm confident...strutting across that rope to the other side with style. Other times....like right now...I feel like I am wavering back and forth slipping off...hanging on by my toes for dear life. I feel like there really is no point in me ever feeling like I can do this...I am only fooling myself. Who am I kidding? I am not the one in control of the blood sugars...DIABETES is!! I can fool myself day after day into thinking I am the one making the decisions...I am the one fighting this...I am the one who is going to prevail in the end. But, really....on days like today....I have my doubts. I am utterly exhausted...sick of it all. We've put in our time...we've done this for 3 1/2 YEARS now...that is LONG enough! I just can't do it anymore...I can't get those panicked phone calls on my cell phone in the middle of the school day...I can't try to educate a substitute teacher about type 1 diabetes and the signs of a low in a matter of minutes first thing in the morning. I can't expect her to know what to look for...i can't expect her to know what to do! I just can't do this anymore! How in the world can someone be expected to function like a normal human being on 5 hours of sleep a night? How can I keep doing this day after friggin day...over and over again...until a cure is found? It's a never ending vicious cycle and I am having the hardest time focusing on finding that light at the end of the tunnel at the moment. I see people out in stores Christmas shopping...laughing, talking, holding hands with their kids and I am jealous...I HATE being jealous! I hate knowing that I am standing in a room full of people and I feel like I am all alone...I'm all alone in my torment and my worry and my anger and my frustration and my exhaustion...I'm all alone and I'm screaming on the inside...screaming at the top of my lungs that I need this to be over...screaming that I am DONE...I just can't keep on living this way...I just can't keep on keeping on anymore...I just can't keep this damn smile plastered on my face anymore...i just can't keep pretending like I am OK anymore...I'm screaming...and yet all that is coming out of my mouth is a meak little whisper...a single tear is falling from my eye and leaving a bitter and sad lonely trail down my cheek. I am so tired.
D-Momma Rap
SO....yea...I am a dork and here is a rap I wrote for all my D-Mom's out there!!
Do you wake up in the morning feeling like P. Diddy?
jump out of bed feeling all kinds of giddy
skip on down the stairs with a grin upon your face
start the coffee brewin with no time to waste
Open up your kids bedroom door
singing good morning with a roar
Make their breakfast with a kiss and a smile
send them off to school with a "see you in a while!"
Do you spend your days working at a regular job?
without a second thought or a stressful sob
your biggest worry if your kid will get in trouble
and sent to the principal on the double
Finish up at work and leave at the end of the day
without a single phone call from the teacher to say
your kid is low and about to pass out
hurry up and get here, you know the route
You kiss your kids forehead as you tuck them in bed
confident in knowing you won't wake to find them dead
Sleep the whole night and don't awaken
to make sure your kid is fine and hasn't been taken
Well, let me share one thing with you that is true
you are more than lucky, it's nothin new
There's a million D-Mom's out there
and we fight this like a bear
Waking in the mornin feeling more like Regis Philbin
we stumble out of bed like we're made of tin
Check our kid's blood sugar, that's a fact
Count the carbs and make sure lunches are packed
Jab a needle in their little arm
bolus off their pump, we can do no harm
Send 'em off to school with a kiss and a hug
with shouts of "Please call me if you're low, my love!"
Spend the day worrying if they're fine
dreading the phone calls that come at snack time
Rush to the school to fix a low blood sugar
Man diabetes is really a booger
Pick them up from school and it carries on
diabetes never sleeps, it's really not da bomb
Ya see, D-Mom's are a special caring breed
We give up our lives with no thoughts of greed
We stay up all night to keep our kids safe
We love, fight, cry, and have faith
This disease will not beat us in the end
For we are the chosen, the special, the true
We love our type 1 kids
oh yes we do!
Do you wake up in the morning feeling like P. Diddy?
jump out of bed feeling all kinds of giddy
skip on down the stairs with a grin upon your face
start the coffee brewin with no time to waste
Open up your kids bedroom door
singing good morning with a roar
Make their breakfast with a kiss and a smile
send them off to school with a "see you in a while!"
Do you spend your days working at a regular job?
without a second thought or a stressful sob
your biggest worry if your kid will get in trouble
and sent to the principal on the double
Finish up at work and leave at the end of the day
without a single phone call from the teacher to say
your kid is low and about to pass out
hurry up and get here, you know the route
You kiss your kids forehead as you tuck them in bed
confident in knowing you won't wake to find them dead
Sleep the whole night and don't awaken
to make sure your kid is fine and hasn't been taken
Well, let me share one thing with you that is true
you are more than lucky, it's nothin new
There's a million D-Mom's out there
and we fight this like a bear
Waking in the mornin feeling more like Regis Philbin
we stumble out of bed like we're made of tin
Check our kid's blood sugar, that's a fact
Count the carbs and make sure lunches are packed
Jab a needle in their little arm
bolus off their pump, we can do no harm
Send 'em off to school with a kiss and a hug
with shouts of "Please call me if you're low, my love!"
Spend the day worrying if they're fine
dreading the phone calls that come at snack time
Rush to the school to fix a low blood sugar
Man diabetes is really a booger
Pick them up from school and it carries on
diabetes never sleeps, it's really not da bomb
Ya see, D-Mom's are a special caring breed
We give up our lives with no thoughts of greed
We stay up all night to keep our kids safe
We love, fight, cry, and have faith
This disease will not beat us in the end
For we are the chosen, the special, the true
We love our type 1 kids
oh yes we do!
Wednesday, December 7, 2011
My grieving process
I was talking with a newly diagnosed Mom today. I was trying to help her through a rough moment in her day and give her a little comfort in knowing that yes this diabetic life is far from easy...but it most definitely will get "easier" as the days go by. As I was talking with her, it kind of occured to me that it really is sort of like a grieving process we all have to go through. Diagnosis day comes as a shock...it's like a slap in the face. It's a reality check that forces us to realize that we are not necessarily the ones in control. Things happen when we least expect them...curveballs are thrown our way and we have to decide how we will handle them. No matter what is thrown our way though, we always have choices.
When Emma was diagnosed, I thought and felt like it was the end of the world. I was in denial...I thought the doctors and nurses were all wrong. I thought that they had made a horrible mistake and I was actually figuring out ways in my head to prove to them how wrong they were. I was terrified, in shock, and left with zero confidence in my abilities as a Mom. My whole perspective changed...I looked at my own child and wondered how in the world I was going to be able to take care of her.
As time went on though, I found comfort in the routine. I grabbed ahold of each little victory and clung to them for dear life. I was gaining shreds of my confidence back. I knew that I would never ever get back to the point I was at before though. It was impossible now because things were different...and that version of myself would not have been able to manage this new life. I found myself angry a lot of the time. I was angry at the disease. I was angry at God for letting this happen to my little girl. I was angry at the horrid circumstances being dumped on our plate. It was unfair. I was jealous. I often wondered why us? Why could it not have happened to some other family instead? Why did it have to be my sweet perfect girl? It got to the point really where I could physically feel the anger and the hate taking over my spirit. I rarely smiled...I didn't enjoy life...I didn't laugh...I barely talked to anyone outside of my family. I lived that way for about a year honestly. I let the hate build up inside of me until it almost consumed me whole. Then one day I sat down at the computer and wrote a letter to diabetes. I poured my heart out in that letter. I let the hate go. It was a turning point for me really. I could feel the poisoned hateful angry buildup leaving and it made me feel lighter. When all was said and done, I sat there with the tracks of my tears drying on my cheeks and a smile on my face staring at the computer. It was the first time I had smiled in so long and it was the first time I actually felt happy since that first day.
I had begun to accept that this was in fact our life. It was never going to change. I was always going to have to live this way. I would never get a good night's sleep again. I would have to stick multiple needles into my daugter's body every single day. I would have to think outside of the box and get creative with figuring out how to make her childhood as normal as possible. I was seeing the light again. I got involved in fundraising and advocating for type 1 diabetics. I told our story. I reached out to people with the hope of giving and receiving comfort from them. I was feeling the bond from other D-Moms. I finally felt like we belonged. I was taking the time to enjoy the little things in life...the little moments that pass us by so quickly. I was laughing again...smiling again...and it felt good.
Here we are 3 1/2 years later and I would say that I have most definitely gone through the grieving process. I've mourned the loss of our former lives. I've made peace with the fact that we will never have things that way again, unless a cure is found. Yes, I do still have days where I struggle. I still have days where I hate diabetes and what it has done to us. I am still scared. I still worry. It still breaks my heart to hear of new members joining our diabetic family. I cry honest and heartfelt tears when I hear of another loss.
I do know though that we are all in this together. We are there to help each other. We are there to welcome a new family with open arms and whisper in their ear that it WILL be ok and tell them that they CAN do this. We are there to lean on one another...to help one another...to pick each other up when we have fallen to our knees in despair...to wrap our arms around each others shoulders and keep walking down this path. We are all at different points in our grieving process. We are all in this together. I for one am overwhelmed and beyond greatful for all of the support you have given me. I would be lost without every single one of you.
When Emma was diagnosed, I thought and felt like it was the end of the world. I was in denial...I thought the doctors and nurses were all wrong. I thought that they had made a horrible mistake and I was actually figuring out ways in my head to prove to them how wrong they were. I was terrified, in shock, and left with zero confidence in my abilities as a Mom. My whole perspective changed...I looked at my own child and wondered how in the world I was going to be able to take care of her.
As time went on though, I found comfort in the routine. I grabbed ahold of each little victory and clung to them for dear life. I was gaining shreds of my confidence back. I knew that I would never ever get back to the point I was at before though. It was impossible now because things were different...and that version of myself would not have been able to manage this new life. I found myself angry a lot of the time. I was angry at the disease. I was angry at God for letting this happen to my little girl. I was angry at the horrid circumstances being dumped on our plate. It was unfair. I was jealous. I often wondered why us? Why could it not have happened to some other family instead? Why did it have to be my sweet perfect girl? It got to the point really where I could physically feel the anger and the hate taking over my spirit. I rarely smiled...I didn't enjoy life...I didn't laugh...I barely talked to anyone outside of my family. I lived that way for about a year honestly. I let the hate build up inside of me until it almost consumed me whole. Then one day I sat down at the computer and wrote a letter to diabetes. I poured my heart out in that letter. I let the hate go. It was a turning point for me really. I could feel the poisoned hateful angry buildup leaving and it made me feel lighter. When all was said and done, I sat there with the tracks of my tears drying on my cheeks and a smile on my face staring at the computer. It was the first time I had smiled in so long and it was the first time I actually felt happy since that first day.
I had begun to accept that this was in fact our life. It was never going to change. I was always going to have to live this way. I would never get a good night's sleep again. I would have to stick multiple needles into my daugter's body every single day. I would have to think outside of the box and get creative with figuring out how to make her childhood as normal as possible. I was seeing the light again. I got involved in fundraising and advocating for type 1 diabetics. I told our story. I reached out to people with the hope of giving and receiving comfort from them. I was feeling the bond from other D-Moms. I finally felt like we belonged. I was taking the time to enjoy the little things in life...the little moments that pass us by so quickly. I was laughing again...smiling again...and it felt good.
Here we are 3 1/2 years later and I would say that I have most definitely gone through the grieving process. I've mourned the loss of our former lives. I've made peace with the fact that we will never have things that way again, unless a cure is found. Yes, I do still have days where I struggle. I still have days where I hate diabetes and what it has done to us. I am still scared. I still worry. It still breaks my heart to hear of new members joining our diabetic family. I cry honest and heartfelt tears when I hear of another loss.
I do know though that we are all in this together. We are there to help each other. We are there to welcome a new family with open arms and whisper in their ear that it WILL be ok and tell them that they CAN do this. We are there to lean on one another...to help one another...to pick each other up when we have fallen to our knees in despair...to wrap our arms around each others shoulders and keep walking down this path. We are all at different points in our grieving process. We are all in this together. I for one am overwhelmed and beyond greatful for all of the support you have given me. I would be lost without every single one of you.
Tuesday, December 6, 2011
I pretend like I'm ok
After reading the news on the internet this morning about yet another child lost to this disease, I have started to realize something. I am pretty good at pretending. I pretend that if I just stay up till 2:00 in the morning to keep an eye on Emma's blood sugars, that she will be ok. I pretend that as long as I count every carb that goes into her mouth to the best of my ability, then she will be fine. I pretend that as long as I attend every field trip at school and every birthday party she is invited to, that she will be fine. I pretend that as long as I stand there for two hours straight and watch her like a hawk through the window at gymnastics class..searching her face for any signs of a low blood sugar, that she will be ok. I pretend that my little 10 second speeches to her teeange coaches will be enough to keep her safe. I pretend that my meetings with her teachers and other staff at her school explaining to them the importance of looking for signs of lows and the importance of helping her remember to bolus for snacks will be enough to keep her alive everyday. I pretend that by reminding her to wash her hands, it will keep away all of the germs all winter long and keep her healthy to avoid any illness that will wreak havoc on her blood sugars. I pretend that as long as I teach her and inform her and make her aware of all the things I do on a daily basis with managing her diabetes, she will be fine once she spreads her wings and leaves the nest...going off to live her own adult life. I pretend that all of my mistakes that lead to her having crazy high blood sugars will not cause her little body any damage later on in life.
I pretend like I know what I am doing. I pretend like I am ok with everything. I pretend like this is easy and we are fine. I pretend like I am strong. I pretend like I am brave and that I don't worry about any of these things. I pretend like I'm not exhausted on a daily basis. I pretend like it doesn't take every ounce of my strength not to break down and cry when I see or hear another parent complaining about how they've been up all night dealing with a coughing fevered sick child of their own. I pretend like I'm not jealous. I pretend like I wouldn't trade places with them for all the tea in China. I pretend like I am happy. I pretend like I can do this. I pretend like I can do this. I pretend like I can do this.
I pretend like I KNOW that what happened to this young man over the weekend will never happen to Emma. I pretend like we will be the lucky ones. I pretend like I KNOW God will never take her from me like that. I pretend like we are special and that could never happen to us. I pretend that by simply checking her blood sugar frequently all day and all night long....that this could never happen to her...she will never have a seizure and die...she will never leave me in the middle of the night.
I pretend that I KNOW my worst nightmare will never come true. I pretend to believe that I will never walk into her room in the morning only to find her dead in her bed...gone...because of a low blood sugar occuring during the night...while sleep overtook my mind and I selfishly closed my eyes.
I pretend like we are ok. I pretend like I am confident that she will be fine and grow up and have a family of her own and live to be an old lady with no diabetes complications.
I pretend like I KNOW a cure will come in her lifetime.
I've gotten pretty good at pretending over the past 3 1/2 years.
I pretend.
....and it's slowly driving me crazy...
I pretend like I know what I am doing. I pretend like I am ok with everything. I pretend like this is easy and we are fine. I pretend like I am strong. I pretend like I am brave and that I don't worry about any of these things. I pretend like I'm not exhausted on a daily basis. I pretend like it doesn't take every ounce of my strength not to break down and cry when I see or hear another parent complaining about how they've been up all night dealing with a coughing fevered sick child of their own. I pretend like I'm not jealous. I pretend like I wouldn't trade places with them for all the tea in China. I pretend like I am happy. I pretend like I can do this. I pretend like I can do this. I pretend like I can do this.
I pretend like I KNOW that what happened to this young man over the weekend will never happen to Emma. I pretend like we will be the lucky ones. I pretend like I KNOW God will never take her from me like that. I pretend like we are special and that could never happen to us. I pretend that by simply checking her blood sugar frequently all day and all night long....that this could never happen to her...she will never have a seizure and die...she will never leave me in the middle of the night.
I pretend that I KNOW my worst nightmare will never come true. I pretend to believe that I will never walk into her room in the morning only to find her dead in her bed...gone...because of a low blood sugar occuring during the night...while sleep overtook my mind and I selfishly closed my eyes.
I pretend like we are ok. I pretend like I am confident that she will be fine and grow up and have a family of her own and live to be an old lady with no diabetes complications.
I pretend like I KNOW a cure will come in her lifetime.
I've gotten pretty good at pretending over the past 3 1/2 years.
I pretend.
....and it's slowly driving me crazy...
Monday, December 5, 2011
Is this my fate?
more poetry time.....
Plucking the strings of my mind
humming a tune to my madness
You mock me with your daily grind
and turn my heart to sadness.
Swallow my skills with a careless thought
and steal the hope that I sing of
You laugh in my face at being caught
and yet you desire my hate as if it were love.
Sitting back on your rocking chair
sneer upon your face
I don't know how much more I can bear
and still manage to keep my grace.
A slap to the cheek from a best friend
would be a gift compared to your brand of hate.
Relentless and evil, when will it end?
Is this all there is? Is this my fate?
Plucking the strings of my mind
humming a tune to my madness
You mock me with your daily grind
and turn my heart to sadness.
Swallow my skills with a careless thought
and steal the hope that I sing of
You laugh in my face at being caught
and yet you desire my hate as if it were love.
Sitting back on your rocking chair
sneer upon your face
I don't know how much more I can bear
and still manage to keep my grace.
A slap to the cheek from a best friend
would be a gift compared to your brand of hate.
Relentless and evil, when will it end?
Is this all there is? Is this my fate?
Sunday, December 4, 2011
A Victory is a Victory
The victories...that's what it's all about. Small or large...a victory is a victory. Be it triumphing over your fears and taking that first leap off the familiar and beaten path to begin the pumping journey...jumping in with both feet, arms high above your head, and heart wide open...vunerable and ready to take whatever is thrown your way. A fellow D-Mom and friend made that leap this weekend actually and I couldn't be more proud of her and her own extra sweet girl.
Be it managing to make it through that 20 minutes following a low blood sugar reading. The agonizing waiting...staring at the clock...watching the seconds tick by...staring at your child, trying to decipher from the outside what is actually going on on the inside....wondering if the juice you have given them is in fact working and bringing their blood sugar back up. We've all survived that 20 minutes of hell at one point or another..many times actually. We've all experienced that victory.
Be it having our voices heard in public. Putting our brave face on and standing before a room full of city council members...sharing our story with them...trying to make them realize how REAL this life is and how much we need their support. Swallowing our fears and going on camera or radio to spread awareness...share with the general public that is more often than not, ignorant on the subject of type 1 diabetes as a whole. We achieve these victories together. We are one group, one heart, one soul, one fight. We stand together and are victorious as one because we all are working towards the same goal and we all have a common bond and love for the diabetics in our lives.
Be it simply waking up in the morning and getting out of bed after that first night. That first sunrise following diagnosis day...or that first morning following a horrendous night of stomach viruses and low blood sugars topped off with high ketones...or just the average morning, in the middle of an average week, an ordinary day about to unfold before you. Those dark, scary, lonely nights that seem to never end...well, once the sun rises and we open our eyes...we are met with another victory.
There are a million different victories in this diabetic life to be proud of. It's not always easy to remember them while we are in our darkest hours...lost...scared...alone. However, they are always there...and try to remember that they will become clear soon enough...and we will all be cheering you on together.
Be it managing to make it through that 20 minutes following a low blood sugar reading. The agonizing waiting...staring at the clock...watching the seconds tick by...staring at your child, trying to decipher from the outside what is actually going on on the inside....wondering if the juice you have given them is in fact working and bringing their blood sugar back up. We've all survived that 20 minutes of hell at one point or another..many times actually. We've all experienced that victory.
Be it having our voices heard in public. Putting our brave face on and standing before a room full of city council members...sharing our story with them...trying to make them realize how REAL this life is and how much we need their support. Swallowing our fears and going on camera or radio to spread awareness...share with the general public that is more often than not, ignorant on the subject of type 1 diabetes as a whole. We achieve these victories together. We are one group, one heart, one soul, one fight. We stand together and are victorious as one because we all are working towards the same goal and we all have a common bond and love for the diabetics in our lives.
Be it simply waking up in the morning and getting out of bed after that first night. That first sunrise following diagnosis day...or that first morning following a horrendous night of stomach viruses and low blood sugars topped off with high ketones...or just the average morning, in the middle of an average week, an ordinary day about to unfold before you. Those dark, scary, lonely nights that seem to never end...well, once the sun rises and we open our eyes...we are met with another victory.
There are a million different victories in this diabetic life to be proud of. It's not always easy to remember them while we are in our darkest hours...lost...scared...alone. However, they are always there...and try to remember that they will become clear soon enough...and we will all be cheering you on together.
Fear
Fear is a huge part of diabetes. That is one thing I have learned many times over the past 3 1/2 years. Sometimes the fear is so overwhelming that it threatens to take over my whole mind. Fear to go to sleep at night. Fear that if I give in to my exhaustion and accidentally let my eyes slip shut that I will miss a severe low blood sugar in the next room and she will leave me. Fear that she will die while I am asleep. Fear that I have guessed wrong at the number of carbs she is eating and I will have given her too much insulin. That she will die because of a simple push of a button on her insulin pump...a button that MY own fingers pushed...a button that was pushed, because it's what I do...I push buttons to give her the insulin that her body no longer produces on it's own. Fear that when I drop her off at school in the morning and kiss her goodbye...that it will be the last time I kiss her goodbye ever....because she might give herself the wrong amount of insulin at snacktime and have a low and die....or she might pass out and have a seizure from all the activity in gym class. Fear that I am not doing enough to prepare her to take on the monumental task of managing her own diabetes one day when she is grown and living on her own. Fear that no one else cares. Fear that the rest of the non-diabetically affected world will always just continue to go about their days without a second thought to this. Fear that they will perpetuate the ignorance and in turn make my daughter's life that much more difficult.
Fear that a cure will never be found.
Fear.
It's a powerful and yet weak emotion all rolled into one. It is enough to knock you flat on your face and leave you writhing in pain, anguish, and grief. Yet it also steals away your strength, your pride, the fire that burns within. How do we as parents of diabetics or diabetics ourselves somehow learn how to manage that fear and still go about our daily routine? How do we learn to bury it way deep down and still plaster a smile on our faces? How do we learn to deal with it...the enormous weight of it and still find the energy to laugh with our kids?
I honestly have no idea. All I know for certain is that when you are faced with fear like we are on a daily basis, you don't have a choice...you don't have the option to choose the easy way out and sit there cowering in the corner. Diabetes has made us strong. Yes, I know without a doubt that most days I do not feel strong...I don't feel capable...I don't feel like I'm good enough to be doing this job.
However, I do know that I am a lot stronger than I was 3 1/2 years ago. I am a lot stronger and more capable than I was on June 26, 2008. I am a lot less naive. I am no longer ignorant. I have a lot more compassion.
I am stronger than the fear.
Fear that a cure will never be found.
Fear.
It's a powerful and yet weak emotion all rolled into one. It is enough to knock you flat on your face and leave you writhing in pain, anguish, and grief. Yet it also steals away your strength, your pride, the fire that burns within. How do we as parents of diabetics or diabetics ourselves somehow learn how to manage that fear and still go about our daily routine? How do we learn to bury it way deep down and still plaster a smile on our faces? How do we learn to deal with it...the enormous weight of it and still find the energy to laugh with our kids?
I honestly have no idea. All I know for certain is that when you are faced with fear like we are on a daily basis, you don't have a choice...you don't have the option to choose the easy way out and sit there cowering in the corner. Diabetes has made us strong. Yes, I know without a doubt that most days I do not feel strong...I don't feel capable...I don't feel like I'm good enough to be doing this job.
However, I do know that I am a lot stronger than I was 3 1/2 years ago. I am a lot stronger and more capable than I was on June 26, 2008. I am a lot less naive. I am no longer ignorant. I have a lot more compassion.
I am stronger than the fear.
Friday, December 2, 2011
A Poem to make me feel better
this is totally not diabetes related at all, so I apologize. Just got my feelings hurt today by someone that I care about. So, this is helping me feel better.
Why do we let people hurt us
Let them stake claim in our hearts
why do we welcome them into our arms
only to be met with a barrage of darts
Why do we feel this need to fix
take hold...mold...and turn to gold
why do we believe their intents are good
only to be met with a mocking so bold
Why, you ask...
for you feel the same,
you wrap your arms around the same type
until it drives your heart insane.
I have no answers
no reasons
no rhymes
I only know
I will continue to grow
and no longer will I let your cruel ways into my mind
Why do we let people hurt us
Let them stake claim in our hearts
why do we welcome them into our arms
only to be met with a barrage of darts
Why do we feel this need to fix
take hold...mold...and turn to gold
why do we believe their intents are good
only to be met with a mocking so bold
Why, you ask...
for you feel the same,
you wrap your arms around the same type
until it drives your heart insane.
I have no answers
no reasons
no rhymes
I only know
I will continue to grow
and no longer will I let your cruel ways into my mind
Thursday, December 1, 2011
12 Days of Christmas...diabetes version
A little Christmas music to put us all in the spirit....lol....diabetes style of course!
On the first day of diabetes, the doctor gave to me
a Type 1 cutie
On the second day of diabetes, our new life gave to me
2 new gray hairs and a Type 1 cutie
On the third day of diabetes, our new life gave to me
3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the fourth day of diabetes, our new life gave to me
4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the fifth day of diabetes, our new life gave to me
5 hours sleeeeeeep
4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the sixth day of diabetes, our new life gave to me
6 days of wearin the same smelly jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the seventh day of diabetes, our new life gave to me
7 bloody test strips on the car floor, 6 days of jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the eighth day of diabetes, our new life gave to me
8 carb Oreos discovered, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the ninth day of diabetes, our new life gave to me
9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the tenth day of diabetes, our new life gave to me
10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the eleventh day of diabetes, our new life gave to me
11 middle 'o night stubbed toes, 10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the twelfth day of diabetes, our new life gave to me
12 tears of pride and love, 11 middle 'o night stubbed toes, 10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 CUTIEEEEE!
On the first day of diabetes, the doctor gave to me
a Type 1 cutie
On the second day of diabetes, our new life gave to me
2 new gray hairs and a Type 1 cutie
On the third day of diabetes, our new life gave to me
3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the fourth day of diabetes, our new life gave to me
4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the fifth day of diabetes, our new life gave to me
5 hours sleeeeeeep
4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the sixth day of diabetes, our new life gave to me
6 days of wearin the same smelly jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the seventh day of diabetes, our new life gave to me
7 bloody test strips on the car floor, 6 days of jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the eighth day of diabetes, our new life gave to me
8 carb Oreos discovered, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the ninth day of diabetes, our new life gave to me
9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the tenth day of diabetes, our new life gave to me
10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the eleventh day of diabetes, our new life gave to me
11 middle 'o night stubbed toes, 10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 cutie
On the twelfth day of diabetes, our new life gave to me
12 tears of pride and love, 11 middle 'o night stubbed toes, 10 new D-Momma friends, 9 brain cells left, 8 carb Oreos, 7 bloody test strips, 6 days of jammies, 5 hours sleeeeep, 4 temper tantrums, 3 panic attacks, 2 new gray hairs, and a Type 1 CUTIEEEEE!
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