Teetering on the edge

I feel myself slipping today. Slipping over the edge into that dark place with this disease. I am teetering on the brink of bad things going on in my head and I am trying to catch my balance. I'm trying to stay on top and not let myself fall....but it's hard. It's really hard this time for some reason. I've been in this place before. I've fallen over the edge many times and gotten sucked into the depression that comes with this life...this never-ending diabetic monotony extravaganza. It's a dark and scary place and it sucks you in. It's awful and I think the worst part of it is that I know it won't be the last time I fall in there. I know this because I can see the marks of previous days and nights spent in that sad place. I can feel the sadness and the wasted breath of screams of anger. I can see the marks upon the wall and the anguish behind them. I feel it. I know I will be there again...and I will find my way out again...and I will fall again...it's a continuous cycle. I find it hard to gather the strength to stay on top and not get sucked in. I don't know if it's because our JDRF Walk is coming up this Sunday...and it will be our 4th time walking. I don't know if it's because next month will mark 4 years of living with this disease...marking half of my baby girl's life. I don't know if it's simply because I am tired...tired of it all...tired of counting carbs, bolusing, deciphering patterns in her numbers and making adjustments to her basal rates...tired of the lows that come out of nowhere...the change in seasons and weather that wreak havoc on numbers. I don't know if it's just because I am tired of it all...I'm just tired. I hate this disease and I hate that it makes me complain. I hate that it makes me feel like I have to fight to stay on that edge...that positive edge that still has sunlight shining down upon it. I hate that there is even a black hole of sadness and depression that I know about. I hate it. I wish that I didn't even know that it existed. I wish that the morning light would shine and I would awaken with a smile upon my face as opposed to pure exhaustion in my eyes and a stuporing stumble in my steps as I make my way to her room to make sure she's still alive. I hate that fear....that never ending fear. I hate how sometimes I feel like I am just fooling myself into thinking that I am in control of this...that as long as I do my best and am as exact as possible and as on top of things as possible...that nothing bad will ever happen...that she will be healthy and happy and fine. I know there are people in this world that are always capable of seeing the positivity in things...and I am usually ok at it...I have a wicked sense of humor (i know...i know...wow...way to speak so highly of yourself at a time like this amy!) But I fall sometimes too...I'm not perfect. I get sad...I get mad at this disease...I get jealous of others that don't have to live this life. I know I shouldn't and I hate that I do...but it still doesn't take away from the fact that I still do sometimes....I can't help what I feel...I just feel it. I endure it and I hate it and I hate myself for not being able to control my emotions sometimes...i hate that I have allowed so many tears to fall. I mask my sadness a lot of times by trying to be funny...laughing it off...making fun of myself and acting like it's no big deal....but a lot of those times I think I am just trying to convince myself that I am ok...that I am fine...that the screaming tears going on inside my head are not really me...so i joke and I laugh...and I make light of it. It's exhausting. I would have hoped after 4 years of this that I would have learned a better way to cope with days like today...but I haven't...and I don't know if that makes me a bad person or not...but it's just the way it is. Maybe someday I will learn a better way...but for now, I will just attempt to keep clawing my way back out and hanging on for dear life to that last speck of sun shining down upon my fingertips.

The popsicle moments in life

Sometimes in this life with diabetes it's hard to remember the little things. The things that make all the difference. The things that make you realize that it is not all about the needles and the blood and the pain and the highs and lows. It's about the moments in between. We get so caught up in the day to day management of blood sugars that we tend to lose sight of what really matters...the seemingly small victories. Well, yesterday we had one of those victories and it seems like it renewed my spirit. It was an EXTREMELY hot day yesterday here in Ontario...we're talking 40 celisius (104F) with the humidity factored in....hot....really hot. I sent Emma off to school with all of the protection possible...a hat to keep her brain from frying when out at recess, sunscreen covering every exposed inch of skin, and instructions to drink water...lots of water...all day. There are maybe 3 tiny little trees on the playground at her school to provide a tiny amount of shade for the kids. It was really amazing to me to see them at lunch recess when I brought Emma back to school. Usually when I walk up the path I am greeted by the sounds of screaming banshees and the sight of a mob of kids running around like maniacs enjoying their free time in the fresh air. Well, yesterday I walked up the path and there was a crowd of kids gathered under the bit of shade...huddled together...sitting criss-cross applesauce in the grass...moving as little as possible. The other kids were sort of lying around in the field looking like a bunch of limp lettuce. It was quiet...there was no screaming...no running around. They were all trying to endure the heat as best they could, I suppose.
Anyway, later on that afternoon I got a phone call from the school and I was sort of puzzled. Usually I will get a little jumpstart to my heart when the phone rings and I see her school on the caller ID...except this time it wasn't snack time...it wasn't the "usual" time I would ever get a phone call with a problem in her blood sugars. It turned out to be one of the two teachers assistants (EA's) in Emma's class. Ever since Emma started school in junior kindergarten these two women have been there in the class helping out with another boy with special needs. They have always just taken it upon themselves to help Emma too when she needs it. They go above and beyond the call of duty and out of the kindness of their own hearts, they help her. I have always been greatful for the extra sets of eyes to look out for her. In any case, the EA called me and said, "One of the teachers brought in popsicles for the kids and they are 15g of carbs, and we were wondering if Emma can have one too?" I was floored. It brought tears to my eyes instantly and it was honestly the best news I had heard all day. I told her tha yes of course Emma could have one...just tell her to bolus for the 15carbs and not bother to check her BG again. I hung up the phone and it hit me....this woman cared enough to make sure Emma was included...to make sure that she didn't feel different. She cared enough to not only call me, but to also check the carb count ahead of time. I love the EA's for that. After school, as Emma and I were walking back to the car, we passed by this same EA that called me and I almost burst into tears. I told her thank you once again and she said, "aww it was nothing! I just wanted to make sure Emma got to have one too!" I love that she perceived the situation as nothing more than that. She didn't feel like she had gone above and beyond. She didn't feel like she had done anything out of the ordinary. She didn't feel like she had done something special. However, to me...and to Emma...that popsicle might as well have been a million dollars prize. To Emma, she wasn't different...diabetes didn't force her to stand out and be stared at or pitied. It didn't slap her in the face with reality and make her take notice to the fact that she isn't like everyone else in her class. The way that EA handled things for her....it made Emma feel normal. To me, that is more precious than anything in the world. I tried my best to express to this woman how her seemingly small act of kindness and compassion for my daughter meant all of this to me.....but I don't think I could ever find the proper words.
So, in the midst of the insanity...in the midst of the stress, the worry, the feelings of despair......try to remember the little things...the moments in between. Try to seek out and recognize your "popsicle moments".....because they are powerful. The "popsicle moments" will renew your spirit and make you feel like there really are good and decent...kind and caring individuals in the world that are on your team. They are on your side and will be there to help you make your type 1 kids life better. I love the EA's for that and I love our "popsicle moments."

Veterans and Newbies together in the park

Emma and I spent some time at the park today with a few other local families that have kiddos with Type 1. There were 3 families including us that were "veterans" so to speak....and 2 families that are new to this life. It's sort of a strange feeling really...sitting there on the blanket in the grass and looking around at the different stages. Some have been through the wringer countless times now...illnesses, ketones, high blood sugars, low blood sugars. They have seen the things that this disease can do to you. They have a million stories and experiences they could share with you to give you some insight, some advice, some reassurance. They have been broken...they have been knocked down flat on their face from this disease. They have the experience under the belt and good or bad, they are willing to help the new people...because they know what it's like....they've been there...they've felt every single emotion the new people are currently feeling...and they have come out on the other side ok. I sat there listening to the new families and seeing the look in their eyes and my heart broke for them. There was one family with a little boy who I believe was 2 or 3 years old. I sat there listening to his Mom and Dad speak and immediately I was transported in my head back to those early days with Emma. She was 4 years old when she was diagnosed and it seems like a lifetime ago. I don't like to go back to that time...I don't like to open that door and allow myself to peek into that room...that sad, dark, dank room. I don't like it....but every single time I meet a newly diagnosed family, I do it anyway. I open it a crack...just so I can be there for them...help them in any way I can...make them see that I understand and that they will be ok...because I am ok....no matter if I have had the worst diabetes day imaginable...I am still ok. So, I open that door to my sad room just a crack...and I let that darkness wash over my heart for just a bit...and I try to portray this image of "ok-ness" for them. I know there are really no words that will truly honestly make them feel better....but I try to find the words anyway. I wish i could take the scared look from their eyes. I wish I could take that weight off of their shoulders. I wish I could take away that slight hint of fear and stress in the tone of their voice. I wish I could....but I can't...because we are now in this together....and I know that the circle will continue to grow...the people affected by this disease will continue to grow in numbers...the families that are "new" now, will soon be "veterans"...and they will in turn be there for future "new" families. It's a never ending circle of things. So, even though I know that it will be hard...and it will hurt my heart...I still go to these things...because I can't not go...I can't not be there for them...I don't have it in me to not do whatever I can to help them. It's depressing and yet comforting at the same time. What a weird life this is sometimes.
So, I left feeling that sadness in my heart again. However, on the way home, Emma said to me, "Mommy, I think there should be a special adoption place where Mom's like you could go adopt kids that have diabetes like me, and they don't have a Mom or Dad. Wouldn't that be cool?" Yes, it would be pretty cool. It's moments like those that make me realize how lucky I am. I don't know why she brought this up...or what made her think of it...but she did...and it made me smile to know that she has that special part of her heart that makes her considerate of others and kind...and caring. Once again, my daughter who is wise beyond her years...made me...the parent...feel better.

It's all been said before

Sometimes I feel like it's all been said before. It's all been experienced. It's all been done. It's all been talked about. We all know this life is hard. We know it is stressful and frustrating and sad and maddening. We know it. We live it. We wake up every single morning, get out of bed, and do it. We make it work...even in the midst of the worst blood sugar days, the dreaded stomach virus, ketones, and stubborn lows that just won't quit......we make it work. We get up and we do it.
I've been asked many times over the years...How do you do it? How do you keep going every single day and do it? How do you stick Emma with needles day in and day out? Doesn't it break your heart?
I've been told many times over the years...You are amazing. You are such a good Mom. There is no way that I would be able to do that every day. There's no way I would be able to give my kid a needle every day. She is such a brave soul and such a hero. You are both an inspiration.
While I do appreciate the kind words and encouragement, I honestly don't think we are doing anything particularly special or out of the ordinary in what a normal Mom would do for her child in a situation like this. You never really know what you are capable of or what you would do in a situation like ours until that day arrives. Once you are told that your child has a disease that will be with them every single day until a cure is found, a kind of shift occurs in your way of thinking. You go into survival mode and you muddle your way through until you are able to create something beautiful out of the madness. Diabetes is an ugly disease...and you make it your main goal every single day to turn that ugliness into something beautiful. Some days we achieve that with very little effort...and other days we barely squeeze out a tiny spark of beauty. Yet, we fall asleep that night and wake up the next morning to try all over again. The perseverance and tenacity required to live this life is what makes us astounding I think. We get knocked down, beat up, kicked over and over again. We sport the war wounds of a never ending battle. We lose...we guess...we try...we lose...we guess...we try...we win. It's an incredible ability to have in my opinion. To get shot down so many times...to fail so many times....and still have that fight left in you to get back up and try again. It's just the nature of the beast.
So, we soldier on and make it work. We accept it, we fight it, we win some, and we lose some. Through it all, we have faith....we have hope...we have each other. I think that is the most beautiful thing of all...the power of the diabetes connection. It's there between family members dealing with this together. It's there between husbands and wives, siblings, even pets. It's there between friends...be it kids at school, other families with Type 1 kiddos, Facebook groups, all of you fantastic blogging friends out there.......or any other variation of a true friend. That connection is there between us all. Every minute of every day...that connection is there...that comraderie...that bond. That to me is perhaps one of the most beautiful aspects of this life. The power of our perseverance and our bond will help us conquer this life together.

Diabetes Sucks Lane...Homes available now!

So, I was talking with some friends tonight about how cool it would be to have all of us D-Mom's living on the same street. I think one of my friends called it "Diabetes Sucks Lane." It was all said in a joking manner, but it really got me thinking...how cool would that be? There would be no worries about sending your T1 kiddo out to play...no stressing out over sleepovers...you could be absolutely confident that any and all food or snacks given out at playdates would be carb counted and bolused or injected for correctly. Ahhh...it would be amazing. It brings a smile and a sigh of relieving comfort to me just to think about it!
I get this same feeling whenever we are gathered at JDRF events or playgroups. The thought that runs through my head of the comfort I feel in knowing that if something were to go wrong with Emma or her pump, there would definitely be someone there to help. It's an indescribable feeling really. I suppose it must kind of be like what other Mom's feel when they send their kids places on a regular basis. There is no extra worry...no added fear...no stress bonus...leaving them at the door and from the moment they are out of your sight, your thoughts are always distracted...part of you still is with them. I don't really know how that feels to be honest. Yes, I do get snippets of that comfort and ease every now and again at the events I was talking about....but they are most definitely not on a daily basis. I wonder what it feels like to have that free feeling every day. It is so weird to me that I don't know what that is like. Sometimes I still feel like this is all a dream. I know it's been years now, and I shouldn't really feel that way anymore....but I do once and awhile. Sometimes I think I get so caught up in that day to day redundant pre-planning and monotony...that I forget that this isn't what the majority of the parents I know do. Most of my friends do not check their child's blood sugar first thing in the morning. Most of my friends couldn't tell you the carb count in a Happy Meal or a Emma-sized plateful of spaghetti if they tried. Most of my friends don't jab their kids with needles on a daily basis. Most of my friends would cringe at the thought of squeezing blood from their kids fingertips multiple times a day...every day. Hell, I'm sure I would be the same way too! I don't fault my non-D friends for that. Yes, I am jealous of it and jealous of their freedom from things like this......but I most definitely do no fault them for it.
So, when my D-Mom friends were talking about Diabetes Sucks Lane....it made me laugh...and then it sort of made me long for that version of our reality. It made me wish for that life. I got this sudden visual in my mind of a sunny street (for some reason resembling Wisteria Lane...a la Desperate Housewives...lol) on a warm summer afternoon. Sitting on my porch drinking a coffee and chatting with another D-Mom...watching our kids run up and down the street from house to house playing with all of the neighbourhood kids. We all had smiles on our faces. We all laughed. A warm breeze blew through the tree in the front yard and the kids were all together. I looked across the street and saw a D-Dad mowing his front lawn. Next door to him I saw a few D-siblings playing hopscotch on the sidewalk. Other people in our D-community were out walking their dogs...tails swishing back and forth...barking at all of the squealing kids as the walked by. I saw the sun setting and one of the D-houses had everyone over for a BBQ and a campfire...complete with S'mores for the kids and drinks for the adults. We all laughed and talked together...the night sky full of stars...blanketing us from the outside world. I saw BG meters being pulled out at random throughout the day...boluses given, pumps returned to pouches, juice boxes drank, and time outs for lows. I saw diabetes presence in this neighbourhood. It was there...just like it's here now...but it was different there. It was not stared at there...not judged there...not unusual there...not a source of panic and stress there....it didn't leave you with a feeling of being alone.
Diabetes Sucks Lane was nice. It was more than nice actually...it was peaceful and beautiful. I think I will store that vision away in my mind for the hard days with this disease. I will store it away in a safe place and pull it out when I need it. I will visit that street again in my mind when I am feeling like I just can't handle it anymore....and I know it will bring a smile and a calmness to my heart every time.

Bloodwork and dentist lessons

I was talking to my Dad the other day and I mentioned to him how bad I felt for Emma this week. She has to have two teeth pulled to make room for others that are already trying to grow in.....and she has to get her annual bloodwork done. You might think that because she is type 1 diabetic and has to have finger pokes and needles and blood taken every single day, that this experience would be nothing for her....old hat...just your run of the mill annoying medical appointment. Well, unfortunately this isn't the case. Emma has to go to the hospital for clinic appointments every 3 months. They weigh her, measure her, take blood from her to get her a1c number (the number that will show the doctors what her average blood sugar number has been for the past 3 months), and talk with the diabetes team of doctor, nurse, and dietician just to discuss any necessary adjustments in her dosages and things. It's all very boring and routine and just another thing at this point that we see as something we HAVE to do. The thing that sends Emma into a panic though is the annual bloodwork. Once a year they have to take an extra vial of blood from her to measure things like her cholesterol level and for celiac, etc. For regular bloodwork appointments, they will usually allow Emma to give up her blood through a finger poke....it's something she's used to...something that makes it easier on her...something that she feels hurts less. Yes, it takes longer...yes, they wind up having to squeeze her finger continuously to fill up enough in that vial.....it's a pain for them...but they do it...because when they try to take it out of Emma's arm, she screams like someone is trying to murder her....she attempts to bolt from the room...it's not a pretty scene. So, this is all fine and good...it's what we have found over the years that works for her. Well, they are unable to do this for the annual bloodwork though....because they need the extra blood....so Emma doesn't have a choice in the matter for this one....she has to suck it up and let them take it from her arm. I hate it. She hates it. The staff at the lab hates it. The other patients waiting in the hallway hate it. But we have to do it. Every year. Once a year. It has to be done. All thanks to diabetes.
So, I was telling my Dad about this and how I felt bad for her and how the bloodwork coinciding with the same time frame as getting two teeth pulled just made it all the more awful for her. As her Mom, I have this unending need to make things easy for her...make things good....fix things...make it better. It's just a feeling deep in my gut. I don't know if it will ever go away. I told my Dad about this and how I was struggling with it all, and he brought up a very good point to me. As usual my Dad tends to say things in a way that make me pause for a minute and say, "aha....I never thought of it that way!" He told me that it was all fine and good and completely understandable to feel bad for her and to want to try and fix it for her and make it easier on her.........but she also needs to know that sometimes in life we have to do things that aren't easy...sometimes in life we have to endure moments of difficulty and do things that we don't necessarily want to do...but we have to anyway. He told me that it is a good thing actually that she learns this as a kid, because if I were to always swoop in and make her life simple and easy and free from any difficulties and problems or hard times, that she could grow up believing this is how it should always be and she would never gain the skills to handle things on her own...to gain the inner strength to make it through difficult times. It really got me thinking...and I honestly see his point.
I think that since diabetes came into our lives, I have always assumed that she knows all about difficulty...she gets it...she understands that not everything in this world will be easy or come easy to her. I think I have gone a little overboard at times, trying to save her from any added pain or stress because she is already dealing with so much as it is in my mind. Yes, she is diabetic....yes, it is hard...no 8 year old should have to deal with the things that she deals with on a daily basis. At the same time though, I think that generally speaking...she doesn't see it as being all that difficult....I think for her....it just....is. It's the way her life is. It's the way it has been since she was 4 years old. It's really probably all that she remembers. So, by me trying to erase all of the other every day difficulties in life for her....I could possibly be doing more harm than good.
It's a difficult life we live...all of the obvious things that come with diabetes intertwined with things like this....the art of raising a well-rounded individual who is able to handle triumphs and defeats with just as much grace. It's hard...and I am learning right along with her.

Her pink bikini bottoms

I have to admit....there is something seriously adorable about seeing my kid run around in her bikini at the splashpad at the park...with her pump shoved down the front of them. It makes me smile. You would think that it would probably make me want to cry or that it would be some glaringly obvious thing shouting at me that SHE IS DIFFERENT...SHE IS DIABETIC...but it doesn't. It makes me smile. Do you know why it makes me smile? Aside from the obvious immature teenager sense of humour I can have at times...where I see it and giggle inwardly at the whole "package" thing. It really makes me smile because it is a glaringly obvious thing that shouts across the park at me...SHE IS ALIVE...SHE IS OK....SHE IS PLAYING AND LAUGHING AND HAVING FUN JUST LIKE ALL OF THE OTHER KIDS ARE!!! Without that little package shoved down the front of her pink bikini bottoms, she wouldn't be here. Without the insulin pumping through that little tube coming out of her bikini and going into her belly, she wouldn't be alive. Whether it be by injection, syringe, or the little package.....if it wasn't there...I would have lost my daughter long ago. I would have lost my heart, my reason for breathing, my reason for stumbling out of bed in the morning.....it would have been ripped from my soul almost 4 years ago now. So, yes.....there I sat on the grass surrounding the splashpad this afternoon, watching her, with a big cheesy smile on my face. I saw her running and playing and laughing. I saw her soaking wet hair stuck in strands and clumps across her forehead and shoulders. I saw the sun glistening off the beads of water on her little 8 year old self. I heard her giggles and chatter as she found a couple of friends from school. It made me smile.
Sometimes when I watch her play, I find myself feeling like I am watching a movie of some other girl...and I am some other Mom...and diabetes isn't a part of our lives. I am just watching this incredible movie that is carefree and leaves you with all of those warm and fuzzy feelings as you walk back out of the darkened movie theater and into the daylight of the parking lot again. And then I blink....and it fades way...and reality sets in. Well, some days that feeling of reality is harder to settle back into again. Other days....days like today....it's beautiful.
I sat there in the park down the street from our house...the same park we have gone to countless times now...and I smiled. I smiled at her innocence...her beauty...at how lucky we are...but most of all, I smiled at that little package shoved down the front of her pink bikini bottoms.