About two weeks ago, Laila came home from school, and almost immediately asked for a snack. We were just hanging out in her bedroom, she wanted to go play and asked if she could switch into some comfier clothes. I told her she could have a snack as soon as she changed and she checked her sugar. Almost instantly the tears came streaming down her face, she was practically screaming at me, begging me to let her eat without checking. She never, ever acts this way. Occasionally she'll roll her eyes, or let out a deep sigh, but never does she cry about having to check her sugar. I knew something was wrong, she was either as high as the Empire State Building, or scary low. As if the tears weren't bad enough, she threw up her hands, putting her dotted fingers on display, and shouted, "Look at my fingers!" My heart sank, but a smile spread across my face and I carried her to the kitchen. The most important thing diabetes has ever taught me is to never let on that somethings' wrong.
I held her, rocked her, and offered to check her sugar. Most of the time, Laila chooses to be in control. She checks her own sugar, attaches her own pump, and is even learning to count her own carbohydrates. Once in a while, she'll let me check her sugar-I feel like even if it's just temporarily-I'm taking a bit of a load off. For a 7 year old, diabetes is a whole lot of unwanted responsibility. She checked her sugar to find a whopping 48, not a number we like to see. Not only would she be starving and have to wait 15 minutes before having a real snack, that also meant she couldn't go outside to ride her bike or play with her brother and sister. Anything that could potentially lower her sugar was out of the question, and she knew it.
When she cries, I have to be strong. When she tells me she hates diabetes, I agree. When she wishes it away, I wish it away, too. I am whatever she needs me to be, After she finished her juice, I let her turn on a short tv show and finally agreed to let her have a snack. I was sure she was occupied, so I went into my room and completely, utterly broke down. I lost it, I bawled, wallowed in my own self pity. I cursed this awful disease, I reminisced the day she was diagnosed, and cried for all the innocence she has lost along the way. In the midst of my sob-fest, Laila walked into my room. I didn't hear her coming, she didn't make a sound. I felt her hand on my shoulder, and couldn't help but smile as she wiped my tears away. She didn't ask why I was crying, she already knew. We hugged, and she held me this time. I told her diabetes sucks, and she agreed.
She's so incredibly strong, I wonder where she gets it.
Friday, March 22, 2013
Saturday, January 19, 2013
Searching for Support
Laila and I have never been big in involving ourselves in the Diabetes Community, and lately I've been wondering if we're truly missing out. I've only connected with one other mom on Facebook, through a mutual friend of ours, and I'm grateful for both of them. I received an entire box full of books I have been pouring myself into for the past week, so I know someone out there gets it, somewhere over the rainbow, someone understands. I have tried connecting to others through general groups online, but nothing is very personal, and lots of them just suggest sending your child to a diabetes camp, which Laila's not interested in just yet. I'm the caregiver of a child with diabetes, I don't know what a high blood sugar feels like, I can't empathize with the sting of a pump site injection, I can only speculate, and sometimes I feel like I have no one to speculate with.
So, I find myself here.
Right here.
Alone on a Saturday night, watching the minutes pass by until it's time again to check Laila's blood sugar while she's sleeping. Don't get me wrong, I'm not complaining, I just wish there was someone here, someone tangible who understood. There are so many times I hear people ask me how I do it, and I reply with the same strange look every time. The endless, ignorant questions don't usually strike me as odd anymore, I do my best to educate quickly and to just move on. My heart always sinks to my stomach when someone refers to Laila's care and tells me, "I could never do that," because I was never given a choice not to. When it's a matter of illness or health, literally life or death, you do whatever you have to do. You stop at absolutely nothing for the wellness of your child, you act first, think about it later.
Diabetes is awful. My mind never turns off, it never slows down, it never truly rests. Every trip she makes to the bathroom in the middle of the night, every cough or sneeze I hear from her room, these are the things that haunt me. I constantly wonder if she's thirsty because her sugar is too high, or if she's hungry because her sugar is too low. There are days when it absolutely consumes me, and I feel like I'm sinking. I can only imagine how she feels.
Cooking is one of the things I absolutely love, but it can be difficult when it comes to counting carbohydrates. Laila's favorite meal of the day is breakfast, she would eat breakfast food three times a day if I let her. Unfortunately, next to pasta and rice, it's one of the hardest meals to count carbs for. She loves waffles, pancakes, french toast, hash browns, bacon, and what kid doesn't smother everything in maple syrup? Once in a while, you get lucky. You make your most educated guess, and then you watch the meter like a hawk every hour on the hour for the number to show, and when it's within healthy margins, you feel like a million bucks. Other times, despite your best efforts, your planning ahead and your precautions, you still lose.
Most days, I feel absolutely in control, or as in control as I can be managing my daughter's disease. There certainly are days I mourn the life we never got to have together, because diabetes got in the way, but I remind myself she's just like any other child, and she's unstoppable. She can run, dance, sing, play, swim, jump, and laugh just like any other child. Maybe diabetes has a bigger lesson for me to learn other than learning to draw insulin into a syringe, count carbs, and brushing up on my math skills. I wish I knew what it was, but until I figure it out, we'll just keep on keeping on. Day by day, we make it through this together, Laila and I. It's not going anywhere, and neither are we.
Until next time.
So, I find myself here.
Right here.
Alone on a Saturday night, watching the minutes pass by until it's time again to check Laila's blood sugar while she's sleeping. Don't get me wrong, I'm not complaining, I just wish there was someone here, someone tangible who understood. There are so many times I hear people ask me how I do it, and I reply with the same strange look every time. The endless, ignorant questions don't usually strike me as odd anymore, I do my best to educate quickly and to just move on. My heart always sinks to my stomach when someone refers to Laila's care and tells me, "I could never do that," because I was never given a choice not to. When it's a matter of illness or health, literally life or death, you do whatever you have to do. You stop at absolutely nothing for the wellness of your child, you act first, think about it later.
Diabetes is awful. My mind never turns off, it never slows down, it never truly rests. Every trip she makes to the bathroom in the middle of the night, every cough or sneeze I hear from her room, these are the things that haunt me. I constantly wonder if she's thirsty because her sugar is too high, or if she's hungry because her sugar is too low. There are days when it absolutely consumes me, and I feel like I'm sinking. I can only imagine how she feels.
Cooking is one of the things I absolutely love, but it can be difficult when it comes to counting carbohydrates. Laila's favorite meal of the day is breakfast, she would eat breakfast food three times a day if I let her. Unfortunately, next to pasta and rice, it's one of the hardest meals to count carbs for. She loves waffles, pancakes, french toast, hash browns, bacon, and what kid doesn't smother everything in maple syrup? Once in a while, you get lucky. You make your most educated guess, and then you watch the meter like a hawk every hour on the hour for the number to show, and when it's within healthy margins, you feel like a million bucks. Other times, despite your best efforts, your planning ahead and your precautions, you still lose.
Most days, I feel absolutely in control, or as in control as I can be managing my daughter's disease. There certainly are days I mourn the life we never got to have together, because diabetes got in the way, but I remind myself she's just like any other child, and she's unstoppable. She can run, dance, sing, play, swim, jump, and laugh just like any other child. Maybe diabetes has a bigger lesson for me to learn other than learning to draw insulin into a syringe, count carbs, and brushing up on my math skills. I wish I knew what it was, but until I figure it out, we'll just keep on keeping on. Day by day, we make it through this together, Laila and I. It's not going anywhere, and neither are we.
Until next time.
Thursday, November 1, 2012
T1D4ADAY
Today is November 1, which means the beginning of Diabetes Awareness month! I found this awesome challenge online for those who want to experience Type 1 diabetes for a day! Simply text T1D4ADAY to 63566. While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loves ones with T1D take each day.
We strive to make Laila feel as normal as possible, there's nothing she can't do besides produce insulin. She can swim, run, play, sing, dance, eat, and many other things. In fact, checking her blood sugar on a consistent basis has it's perks-for the third year in a row Laila has earned the "responsibility" award at school! We're all very proud of her and her daily accomplishments. We've learned not to dwell on the bad, but look for the good. Each sugar check is knowledge, and knowledge is power. The more we know, the more we can use that information to make the next time better. Her sugars have been consistently within range, and she has another appointment coming up near the end of the month, and we look forward to meeting with the endocrinologist and hearing her take on how we're managing Laila's diabetes.
Halloween, luckily, went much smoother than we planned! The kids all had a blast collecting candy, and were joyed to be able to pick a small bag's worth of items to keep. The Switch Witch is a tradition we started a few years back, and the kids truly love the idea of getting something for all the candy they know they'll never be allowed to eat anyway! This really helps eliminate all the "no's" and "not now's" Laila anticipates each time she asks for candy. I'm not a mean mom, just a cautious one, diabetes or not. Even my non-diabetic children don't get to eat more than a few pieces of the Halloween candy before it's long gone!
I hope this month spreads the awareness that's on our minds year round, it's a daily struggle, not just in the month of November.
As I always say, ask questions and educate yourselves.
Find me on Facebook-I'd love to hear from you!
We strive to make Laila feel as normal as possible, there's nothing she can't do besides produce insulin. She can swim, run, play, sing, dance, eat, and many other things. In fact, checking her blood sugar on a consistent basis has it's perks-for the third year in a row Laila has earned the "responsibility" award at school! We're all very proud of her and her daily accomplishments. We've learned not to dwell on the bad, but look for the good. Each sugar check is knowledge, and knowledge is power. The more we know, the more we can use that information to make the next time better. Her sugars have been consistently within range, and she has another appointment coming up near the end of the month, and we look forward to meeting with the endocrinologist and hearing her take on how we're managing Laila's diabetes.
Halloween, luckily, went much smoother than we planned! The kids all had a blast collecting candy, and were joyed to be able to pick a small bag's worth of items to keep. The Switch Witch is a tradition we started a few years back, and the kids truly love the idea of getting something for all the candy they know they'll never be allowed to eat anyway! This really helps eliminate all the "no's" and "not now's" Laila anticipates each time she asks for candy. I'm not a mean mom, just a cautious one, diabetes or not. Even my non-diabetic children don't get to eat more than a few pieces of the Halloween candy before it's long gone!
I hope this month spreads the awareness that's on our minds year round, it's a daily struggle, not just in the month of November.
As I always say, ask questions and educate yourselves.
Find me on Facebook-I'd love to hear from you!
Friday, September 7, 2012
Our Diabetic Life
There are no words to express the way I feel reading this blog. Just when this family thought life couldn't hand them any more lemons, they received an avalanche, extra sour. I'm not one to re-post other people's blogs here, this is a special place for Laila-but this one, I just keep going back, praying, crying, and aching for this family.
All our love.
http://www.ourdiabeticlife.com/
All our love.
http://www.ourdiabeticlife.com/
Saturday, August 18, 2012
Q&A With Miss Laila
Laila is preparing to educate her classmates on the truths about diabetes, and is feeling apprehensive. Together, Laila and I have answered a list of questions in hopes she's prepared to do what she'll have to do so many times in her life: be brave, be independent, and educate those around her about the disease they call diabetes.
Q: Can you eat sugar?
A: I can not eat too much sugar, but I can have sugar. If I have too much sugar, my blood sugar gets high and I feel sick.
Q: Does it hurt when you poke yourself?
A: When I first started, it hurt a little bit. It doesn't hurt anymore, because I'm used to it.
Q: Can you catch it?
A: No. What I have isn't something I can give to someone else.
Q: Do you get sick? Like, pukey?
A: Sometimes. It's only happened to me a few times. When I'm in the 500's or above, I sometimes throw up.
Q: Is it scary?
A: It was scary at first because I had tubes in my hands and they took blood out of one and flushed it with water while I was in the hospital. That hurt. I didn't like it. It's not scary anymore.
Q: How did you get it?
A: I felt very sick at first. We went to the doctor and they took some of my blood and they called and told my mommy and daddy I had diabetes and we had to go straight to the hospital.
Q: What happens when your sugar is high or low?
A: When my sugar is high, I have to give myself insulin. If my sugar is low, I have to drink a juice or eat some sugary candy.
Q: Can it ever go away?
A: No.
Q: What are some signs we need to look for to get help right away?
A: If I ever look like I'm falling asleep, or I start shaking and talking funny, you need to check my sugar fast.
Q: What does it feel like?
A: Diabetes doesn't feel like anything. If I'm too high, I get a stomach ache, if I'm too low, I feel shaky. Otherwise, I can't feel anything.
Q: How did you know you had it? How did they find it?
A: I was feeling very tired, I couldn't eat anything and I was thirsty all the time. My mommy said I got really skinny because I wasn't eating. I went to the doctor and they took some blood and told me my sugar was very high and I needed to go to the hospital so they could make me feel better.
Q: Is there a cure?
A: No, but I hope every day they will find one so I don't have diabetes anymore.
Q: What are your medicines? What do they do?
A: Novolog, it's the name of the insulin I take. That's the only medicine I have. The insulin helps my sugar stay down. I have to take it whenever my sugar is high or whenever I eat something.
Q: Does diabetes feel weird?
A: No. I can't feel anything.
Q: Is it hard to have diabetes?
A: No. Sometimes I even forget I have it.
Q: Do you wear your pump all day? Night and day?
A: Yes, I wear my pump all the time. The only time I take it off is to go swimming or take a bath. It can't get wet.
Q: Do you have a special diet?
A: No. I eat whatever my mommy lets me!
Q: How long have you been a diabetic?
A: Next month will be 2 years since I found out.
Q: Are you born with diabetes, or is it something you develop during your life?
A: I have type 1. I wasn't born with it, I got sick one day and never felt better. I was 5 when I found out I had it.
Q: Can you play sports, or even play outside?
A: Yes! I can play sports and play outside! I can do anything you can do!
Q: Do you have to take "yucky" medicine?
A: No, I only take insulin. Now that I have a pump, I don't even give myself shots anymore.
Q: Do you have to eat "special" foods?
A: No, I can eat whatever I want as long as my mommy and daddy say it's okay. I can have meat, cheese, and anything else that has no carbs in it without any insulin at all.
Q: How come you get to have snacks and juice in school?
A: I have to eat or drink juice if my sugar is low.
Q: Do you think you're better than us?
A: No. We all get insulin, I just don't make my own like you.
Q: Does it hurt to get poked?
A: No. When I put my pump on it stings a little bit, but I don't have to have shots anymore so it doesn't really hurt at all.
Q: How does the pump work?
A: The pump gives me insulin all the time because I don't make my own. When I check my sugar it sends the number to my pump and it tells me how much insulin I need to fix it. When I eat something I put the number of carbs in my pump and it tells me how much insulin I need to eat it.
Q: Why do you have to test your blood before you can choose to eat something?
A: I check my sugar to make sure I'm okay. If I'm too high, I can eat what I want without having to have insulin. If I'm too high and I don't fix it before eating something, my sugar will go even higher and I'll be sick.
If you're a regular follower of this blog, or just stopping by for the first time, I recommend you check out this post I did for Diabetes Blog Week, it's a composite of snapshots taken over the past 18 months of what diabetes really looks like. Feel free to read previous posts and leave comments, Laila LOVES comments!!
Thank you everyone who participated, the turnout was above and beyond what we ever expected! Laila is very excited to talk to her class, she's even invited me to come in and visit with them one day and help her with any tricky questions!
Do you have diabetes, or know someone who does? Want to write about it? Contact me, I'm always in search of guest bloggers, we feature one a month!
All our love.
Q: Can you eat sugar?
A: I can not eat too much sugar, but I can have sugar. If I have too much sugar, my blood sugar gets high and I feel sick.
Q: Does it hurt when you poke yourself?
A: When I first started, it hurt a little bit. It doesn't hurt anymore, because I'm used to it.
Q: Can you catch it?
A: No. What I have isn't something I can give to someone else.
Q: Do you get sick? Like, pukey?
A: Sometimes. It's only happened to me a few times. When I'm in the 500's or above, I sometimes throw up.
Q: Is it scary?
A: It was scary at first because I had tubes in my hands and they took blood out of one and flushed it with water while I was in the hospital. That hurt. I didn't like it. It's not scary anymore.
Q: How did you get it?
A: I felt very sick at first. We went to the doctor and they took some of my blood and they called and told my mommy and daddy I had diabetes and we had to go straight to the hospital.
Q: What happens when your sugar is high or low?
A: When my sugar is high, I have to give myself insulin. If my sugar is low, I have to drink a juice or eat some sugary candy.
Q: Can it ever go away?
A: No.
Q: What are some signs we need to look for to get help right away?
A: If I ever look like I'm falling asleep, or I start shaking and talking funny, you need to check my sugar fast.
Q: What does it feel like?
A: Diabetes doesn't feel like anything. If I'm too high, I get a stomach ache, if I'm too low, I feel shaky. Otherwise, I can't feel anything.
Q: How did you know you had it? How did they find it?
A: I was feeling very tired, I couldn't eat anything and I was thirsty all the time. My mommy said I got really skinny because I wasn't eating. I went to the doctor and they took some blood and told me my sugar was very high and I needed to go to the hospital so they could make me feel better.
Q: Is there a cure?
A: No, but I hope every day they will find one so I don't have diabetes anymore.
Q: What are your medicines? What do they do?
A: Novolog, it's the name of the insulin I take. That's the only medicine I have. The insulin helps my sugar stay down. I have to take it whenever my sugar is high or whenever I eat something.
Q: Does diabetes feel weird?
A: No. I can't feel anything.
Q: Is it hard to have diabetes?
A: No. Sometimes I even forget I have it.
Q: Do you wear your pump all day? Night and day?
A: Yes, I wear my pump all the time. The only time I take it off is to go swimming or take a bath. It can't get wet.
Q: Do you have a special diet?
A: No. I eat whatever my mommy lets me!
Q: How long have you been a diabetic?
A: Next month will be 2 years since I found out.
Q: Are you born with diabetes, or is it something you develop during your life?
A: I have type 1. I wasn't born with it, I got sick one day and never felt better. I was 5 when I found out I had it.
Q: Can you play sports, or even play outside?
A: Yes! I can play sports and play outside! I can do anything you can do!
Q: Do you have to take "yucky" medicine?
A: No, I only take insulin. Now that I have a pump, I don't even give myself shots anymore.
Q: Do you have to eat "special" foods?
A: No, I can eat whatever I want as long as my mommy and daddy say it's okay. I can have meat, cheese, and anything else that has no carbs in it without any insulin at all.
Q: How come you get to have snacks and juice in school?
A: I have to eat or drink juice if my sugar is low.
Q: Do you think you're better than us?
A: No. We all get insulin, I just don't make my own like you.
Q: Does it hurt to get poked?
A: No. When I put my pump on it stings a little bit, but I don't have to have shots anymore so it doesn't really hurt at all.
Q: How does the pump work?
A: The pump gives me insulin all the time because I don't make my own. When I check my sugar it sends the number to my pump and it tells me how much insulin I need to fix it. When I eat something I put the number of carbs in my pump and it tells me how much insulin I need to eat it.
Q: Why do you have to test your blood before you can choose to eat something?
A: I check my sugar to make sure I'm okay. If I'm too high, I can eat what I want without having to have insulin. If I'm too high and I don't fix it before eating something, my sugar will go even higher and I'll be sick.
If you're a regular follower of this blog, or just stopping by for the first time, I recommend you check out this post I did for Diabetes Blog Week, it's a composite of snapshots taken over the past 18 months of what diabetes really looks like. Feel free to read previous posts and leave comments, Laila LOVES comments!!
Thank you everyone who participated, the turnout was above and beyond what we ever expected! Laila is very excited to talk to her class, she's even invited me to come in and visit with them one day and help her with any tricky questions!
Do you have diabetes, or know someone who does? Want to write about it? Contact me, I'm always in search of guest bloggers, we feature one a month!
All our love.
Guest Blogger: Barbara Fox
Laila moved away when she was just a baby, I have not seen her in years until this summer. And she has turned out to be a beautiful, brave 6 year old that makes us all proud. When I learned that Laila was diagnosed with diabetes, I worried as all mothers and grandparents do, but then I knew her would take good care of her and learn all there was to learn about this messed up desease. When Laila and her family came to visit and Laila had to check her sugar, she did it like a pro! It did, however, bother me to have to watch this young lady do it. For a child of six shouldn't have this burden. I then watched her play with the other kids and do everthing they did, it is so cool that she don't let this hold her back. Then I saw her playing with Jazmine(my grandaughter/daughter), Jazmine pointed to her insulin pump and asked what it was. Laila didn't answer her, she just pulled her shirt down over it to hide it. I felt a crack in my heart because I wonder how many times she will do that in her young life. I worry about things like that for Laila, but the desease itself I don't, because her loving mom has got this! I don't know that much about diabetes, but then again I don't have to, her parents have all of that covered, and what great parents they are. Laila is bright, loving and has a smile that will brighten any darkness. She is independant but yet a normal acting child. She knows that life isn't always beautiful and when she her tears fall, her mother will be there to wipe them dry. Laila's strong personality and independance is a beautiful relection of her parents. Joli will try to give me credit on how she is as a mother, I don't like or want to take credit, all I did for her was be there, now I will always be here for her and her children. I sure hope I did the guest blogging right, if not, I hope it will show how I feel about Joli and her family.
Wednesday, July 11, 2012
Guest Blogger: Brandi Jasnica
Wow. Being asked to be a guest blogger is such a privilege, especially when it comes to blogging for my little niece, Laila. I have to admit, I was asked to do this months ago, but by my own procrastination, am only writing now. I wanted to get the words just right, and anything I was coming up with was falling short. So I decided to just write, and this is what I came up with:
(get comfy, I'm wordy)
I first had the sweet pleasure of meeting Laila when she was just a tiny little bundle. You know that saying, "Sugar and spice and everything nice?" Well that is just what Laila is made of. Well, maybe a little more spice than sugar...but you get the point.
I didn't see Laila again until she was 5 years old, and already diagnosed with diabetes. I was actually terrified to be in the same house with her, because I DO NOT do well with needles, which is pathetic, because my own husband is a type 2 diabetic, and by now, I should be use to it. But as it was, I was scared. I didn't want to be a big sissy in front of such a brave, brave girl. There was a moment where we were at the mall. Joli, myself, and the kids. And Laila needed insulin and Joli had her hands full. Joli asked me to give Laila's skin a little pinch, so she could administer the insulin, and I am okay with admitting now, that then, I almost passed out.
At 6 years old, Laila has become a master of her disease, and is quite impressive. I'm still squeamish, but was able to watch her change her pump site without falling over. She didn't say it, but I think she was impressed with me. LOL. Maybe it was just my imagination. She even lectured my husband over the phone about the dangers of not testing when he should. Shame on him. If a 6 year old can handle it, surely so can he.
But all of that is neither here nor there, because what I wanted to blog about is not about how brave Laila is, or how strong and independent and beautiful she is. Even though all of that is certainly true. What I wanted to blog about were the times, be them few or far between, when diabetes can break even the bravest of the brave, and the strongest of the strong.
The times where you truly wish diabetes was a person so you could beat them from here to Timbuktu. The times when those sad, sad eyes look at you and say, "Aunty Brandi, I wish I didn't have diabetes." You know they want a smart answer. Something to take the pain away from changing their pump site yet another time. Something that will delay it for just a few moments longer. But you come up empty because what do you say to a 6 year old who has no choice but to poke herself again? The only thing I could tell her, was the most honest thing I could, "Laila, I wish you didn't have diabetes either." And she just smiled at me. She really is wise beyond her years.
Or the times when it just isn't fair that your mom is a baker and everyone else had an extra bite. Like the time when Laila screamed, "I HATE DIABETES!" because she wanted another cupcake. My heart broke not just for her, but for her mother, who I am sure has had to deliver countless "no's" to her sweet angel faced diabetic child.
Or the other times when sugars are too low, or too high in the middle of night and you have to stay up and do what is necessary to get the right levels. As a mother of three children, Joli knows she is going to have another sleepless night and a very rough day ahead of her. These days are more often than one would like to have. But it comes with the territory, and it is not glamorous.
I don't want to seem like I'm short handing Laila, because she is AMAZING. But there are many other times when this disease has worn a family out. Of course they make the best of it, and faces are always smiling. From just 2 short weeks and many stories I have heard, I gather that if diabetes was in fact a person, I would be in line to get my kicks in.
With no children of my own, I love the ones that are in my life with all that I have. My heart breaks every time I even think about a child having to deal with this disease. Or any other disease for that matter. Childrens' only worry should be if it's rainy or sunny and what to have for cereal. Not glucose meters and insulin or lancets, etc.
To my dear sweet and lovely Laila, I know that it is not fair that you have diabetes. But you should know that your bravery makes other kids be able to cope more easily. You are beautiful, kind, funny, sweet and everything I could ever want in a niece. When I think about you, I don't think about how you have diabetes, I think about your smile. And I think about your thoughtfulness and your cute little face. I love you so much, and I haven't even known you that long. I am grateful that you have other women in your life that can look out for you when mom needs them. They are smart women, so learn from them. And remember to always be yourself. I know that you know that diabetes does not define you. It's not who you are, it's just something that you have. YOU are wonderful, and I love you so so so so SO SO SO SO much!!!!!
Love always,
Aunty Brandi
Major, major diabetes
I've been pondering topics for this month's blog post. I try to incorporate Laila in some way if I can, but something someone said to me just yesterday has me feeling like it's time to educate. At the risk of sounding like a broken record, there are a few things I want everyone to know about this disease. I'll do my best to break it down and simplify it as much as possible, if you have any questions, you know you can always ask.
Let me preface this by saying just because you know someone who has diabetes doesn't mean you "know diabetes". The reason for this post is based on a conversation I had with a girl yesterday. She was young, preteen maybe, and was helping watch some children while the adults were busy. Laila needed to check her sugar, which she did, and reported to me herself. The girl repeated Laila's blood sugar to me after finding a 300+ reading, and I explained that was very high. The girl told me she "knows all about diabetes, cause two of my friends are major, major diabetics". I just smiled, thanked her for her help, and let her know there is no such thing. Diabetes is diabetes, though intensity varies, there's no such thing as a major, major diabetic.
*Type 1 Diabetes, commonly referred to as Type 1, or T1D, is an autoimmune disease in which a person's pancreas stops producing insulin. Insulin is a hormone that enables people to get energy from food.
*There is nothing, and I repeat: NOTHING, you can do to get rid of Type 1 diabetes. There's no magic pill, no special syrup, no cure. INSULIN is NOT a cure! There is also nothing you can do to prevent Type 1 diabetes, either. The cause is still unknown. In our situation, there was no genetic predisposition, no way of knowing beforehand Laila would be stricken with this awful disease.
*Type 1 diabetes means a lifelong dependency on insulin. In our situation, Laila wears an insulin pump. It's the closest thing to a working pancreas she'll probably ever have. Insulin is not a cure for diabetes, even with insulin, there's still the risk of high or low blood sugars, both life-threatening, in addition to multiple other serious effects.
*Everyone is different, and every diabetic is different. There is so much that goes on "behind the scenes" that most people don't ever see. Laila is "intensive treatment", which means every single thing she eats gets counted. Laila counts carbohydrates, everything, even something as tiny as a peanut, must be counted. In addition to counting carbohydrates, Laila has to be careful with other things like exercise, diet, sun exposure-even a common cold can fluctuate her sugars and cause additional complications.
I don't mean for this post to be negative, or to sound like Laila lives a life of impending doom. She's alive, and healthy. Diabetes is just one of the many hurdles Laila's going to face throughout the rest of her life. Producing insulin is the only thing she can't do. She's going to go through plenty of struggles, from a school girl crush to prom dress shopping, one day she's going to have an amazing career and a beautiful family.
Please, take the time to educate yourself. If you have a question, ask. Trust me, I can speak for Laila and myself when I say this-we would rather you just ask than make assumptions, say something ignorant or offensive, or talk about us after we leave. No question is offensive or too bold, I promise.
Let me preface this by saying just because you know someone who has diabetes doesn't mean you "know diabetes". The reason for this post is based on a conversation I had with a girl yesterday. She was young, preteen maybe, and was helping watch some children while the adults were busy. Laila needed to check her sugar, which she did, and reported to me herself. The girl repeated Laila's blood sugar to me after finding a 300+ reading, and I explained that was very high. The girl told me she "knows all about diabetes, cause two of my friends are major, major diabetics". I just smiled, thanked her for her help, and let her know there is no such thing. Diabetes is diabetes, though intensity varies, there's no such thing as a major, major diabetic.
*Type 1 Diabetes, commonly referred to as Type 1, or T1D, is an autoimmune disease in which a person's pancreas stops producing insulin. Insulin is a hormone that enables people to get energy from food.
*There is nothing, and I repeat: NOTHING, you can do to get rid of Type 1 diabetes. There's no magic pill, no special syrup, no cure. INSULIN is NOT a cure! There is also nothing you can do to prevent Type 1 diabetes, either. The cause is still unknown. In our situation, there was no genetic predisposition, no way of knowing beforehand Laila would be stricken with this awful disease.
*Type 1 diabetes means a lifelong dependency on insulin. In our situation, Laila wears an insulin pump. It's the closest thing to a working pancreas she'll probably ever have. Insulin is not a cure for diabetes, even with insulin, there's still the risk of high or low blood sugars, both life-threatening, in addition to multiple other serious effects.
*Everyone is different, and every diabetic is different. There is so much that goes on "behind the scenes" that most people don't ever see. Laila is "intensive treatment", which means every single thing she eats gets counted. Laila counts carbohydrates, everything, even something as tiny as a peanut, must be counted. In addition to counting carbohydrates, Laila has to be careful with other things like exercise, diet, sun exposure-even a common cold can fluctuate her sugars and cause additional complications.
I don't mean for this post to be negative, or to sound like Laila lives a life of impending doom. She's alive, and healthy. Diabetes is just one of the many hurdles Laila's going to face throughout the rest of her life. Producing insulin is the only thing she can't do. She's going to go through plenty of struggles, from a school girl crush to prom dress shopping, one day she's going to have an amazing career and a beautiful family.
Please, take the time to educate yourself. If you have a question, ask. Trust me, I can speak for Laila and myself when I say this-we would rather you just ask than make assumptions, say something ignorant or offensive, or talk about us after we leave. No question is offensive or too bold, I promise.
Saturday, June 30, 2012
Guest Blogger: Kim Rochefort
When Joli asked me to be a guest blogger, I felt a little panicky. I'm not a writer. I've never blogged. Who could possibly be interested in anything I have to say? I don't think I can do it. All of those things ran through my mind. But, Laila inspires me to do things like climb into a little bitty wooden tee pee at the park & throw a peace sign for the camera. Things that are out of my comfort zone. So, here I am. Out of my comfy little box, writing a blog post for Laila.
Obviously, I know Laila has diabetes. But considering the distance between us, I never really KNEW that Laila has diabetes until their recent trip home. I never really understood what having diabetes means for
them.
The way Dustin & Joli have handled this makes me very proud. Laila is so lucky to have parents who have the courage and the strength to stand up to this and are determined not to let it control their daughter’s life and define who she is. As Joli says, the only thing Laila can't do is make insulin. They’re making sure she’s able to do all of the things her friends do; they’re not trying to keep her all nestled safe & sound in some kind of diabetes-friendly safety zone. They’re teaching her (and the rest of us!) that she is just like everyone else. They’re teaching her how to deal with the obstacles in her path. They’re arming her with knowledge and knowledge is power.
I’m so very proud of Laila too. She has more than impressed me, she has amazed me. She is wise and mature beyond her years. Her understanding of diabetes and her ability to manage it is incredible. I just can’t believe all of the things she knows and all of the things she can do by herself. She’s only 6, but this little girl doesn't let diabetes control her, SHE controls her diabetes. It's amazing. I'd be lying if I said that my heart didn't break just a bit every time I saw her check her sugar, count goldfish crackers or check her insulin pump. It just isn't right that a child should have to be concerned with things like carbohydrates before she can even spell the word. Princess tote bags weren’t meant to carry testing supplies. It's not fair and it just plain sucks. Little girls shouldn’t have to do things like this. I try to be a "See things on the bright side" kind of person. I try not to let negative thoughts control my emotions and I'm always looking for the silver lining in every cloud. I honestly thing that there msut be a reason that Laila was chosen to be a Type 1 diabetic. I think she is meant to do great things, maybe as a doctor, a nutritionist, an educator or mayne she'll invent that miracle pump they dream about. She'll most definitely be a role model for other people who struglgle with some sort of unfiar, unwanted, undeserved situation. Maybe this is the silver lining in the cloud. All of the live she'll touch because she has diabetes. Maybe having diabetes is a necessary stepping stone along the way.
So, what is the point to all of my rambling? I guess it's just to let the Smith's know how proud I am of them. I'm so proud of them for making the best of the hand they've been dealt. I'm proud of them for not letting diabetes define their daughter. I'm proud of them for advocating for Laila and getting her the best care possible. I'm proud of them for educating themselves. I'm proud of them for raising their little girl to be independent, self-confident and strong. Dustin & Joli, I know it’s not easy and I know there are moments when you really doubt it, but you’re doing great! You got this.
Obviously, I know Laila has diabetes. But considering the distance between us, I never really KNEW that Laila has diabetes until their recent trip home. I never really understood what having diabetes means for
them.
The way Dustin & Joli have handled this makes me very proud. Laila is so lucky to have parents who have the courage and the strength to stand up to this and are determined not to let it control their daughter’s life and define who she is. As Joli says, the only thing Laila can't do is make insulin. They’re making sure she’s able to do all of the things her friends do; they’re not trying to keep her all nestled safe & sound in some kind of diabetes-friendly safety zone. They’re teaching her (and the rest of us!) that she is just like everyone else. They’re teaching her how to deal with the obstacles in her path. They’re arming her with knowledge and knowledge is power.
I’m so very proud of Laila too. She has more than impressed me, she has amazed me. She is wise and mature beyond her years. Her understanding of diabetes and her ability to manage it is incredible. I just can’t believe all of the things she knows and all of the things she can do by herself. She’s only 6, but this little girl doesn't let diabetes control her, SHE controls her diabetes. It's amazing. I'd be lying if I said that my heart didn't break just a bit every time I saw her check her sugar, count goldfish crackers or check her insulin pump. It just isn't right that a child should have to be concerned with things like carbohydrates before she can even spell the word. Princess tote bags weren’t meant to carry testing supplies. It's not fair and it just plain sucks. Little girls shouldn’t have to do things like this. I try to be a "See things on the bright side" kind of person. I try not to let negative thoughts control my emotions and I'm always looking for the silver lining in every cloud. I honestly thing that there msut be a reason that Laila was chosen to be a Type 1 diabetic. I think she is meant to do great things, maybe as a doctor, a nutritionist, an educator or mayne she'll invent that miracle pump they dream about. She'll most definitely be a role model for other people who struglgle with some sort of unfiar, unwanted, undeserved situation. Maybe this is the silver lining in the cloud. All of the live she'll touch because she has diabetes. Maybe having diabetes is a necessary stepping stone along the way.
So, what is the point to all of my rambling? I guess it's just to let the Smith's know how proud I am of them. I'm so proud of them for making the best of the hand they've been dealt. I'm proud of them for not letting diabetes define their daughter. I'm proud of them for advocating for Laila and getting her the best care possible. I'm proud of them for educating themselves. I'm proud of them for raising their little girl to be independent, self-confident and strong. Dustin & Joli, I know it’s not easy and I know there are moments when you really doubt it, but you’re doing great! You got this.
Traveling With Diabetes
Our family vacation this summer was a planned two week trip to Michigan. We had spent weeks dreaming of the sand between our toes, the sunshine on our faces, and the company of friends and family. I knew this vacation was much more than that, it was a liberating moment for all of us. Since Laila's diagnosis, we've only traveled a few hours away at best, and always comfortable with our surroundings. This trip wasn't merely a hop, skip, and jump away-it was a plane ride and a few hours in the car, if you ask me, it felt like a lifetime.
Packing for the trip was tedious, five people, two weeks, it was no easy feat. I made list after list of the things I would need, and I still wasn't convinced I brought everything. Packing Laila's supplies made me so nervous, I am always second guessing myself. I knew in the back of my mind I had everything, but as a mother, there's no emergency you can leave the house not prepared for. Especially when you're the parent of a Type 1 diabetic.
In preparation for the trip, I researched the guidelines for carrying supplies such as needles, insulin, and what Laila would do with her insulin pump while going through security. I had planned on taking everything with us on the plane, my carry-on bag was large enough to hold all of her supplies, there was no way I was letting any of her things out of my sight.
Call me neurotic, but I wasn't going to leave this state until I knew I was, at best, prepared. I packed enough insulin and pump site changes for one per day, even though she changes once every third day. I brought an extra insulin pen, syringes, and ketone strips. I had no idea what the next two weeks would bring, and I was ready!
The flight out wasn't difficult; despite the large airport, they were very accommodating to our needs. We explained Laila's condition before going through any security devices, checked her sugar before getting on the plane, and even achieved "preboarding" status due to a few toothless smiles! The flight home was a much smaller plane, and seemed to go even better than planned. Security was a breeze, the flight was uneventful, and before we knew it we were on the ground, safe and sound.
Now that the trip is behind us, I'm pleased to say we endured no serious troubles. I didn't use even a third of the supplies I packed, but as a mother, you can never be too sure.
Thursday, May 24, 2012
Guest Blogger: Josie Morgan
Dearest Laila,
I first
want to tell you, you are a beautiful, strong, smart young women. I can remember
as if it was yesterday when I first saw you, you just moved down the street and
you were riding your bike. You would ride back and forth to our truck than back
to your house. I was amused by how fast your little legs where going on your
big wheel. I was eager to put Samantha on her bike to ride along with you, but
she was too young and inexperienced to ride her bike. A few weeks later, I met
you mom and our families have blossomed together.
I also
recall that horrible day, I found out the news of your sky rocketing blood
sugar. We were at a playdate and your mom called crying, asking if I could watch Kenadi
and Dustin so she could collect your items while you spent a few days at the
Phoenix Children’s Hospital. That day seemed dark, unreal and almost
liked it was a blur. Although, by the end of the day you were diagnosed with
Type 1 diabetes you kept smiling as if your world has opened a new door to new
possibilities and adventures.
The
months following, I have noticed you haven’t allowed diabetes to slow you down.
I believe you have done the opposite, you have shown the world you can do
anything you put your little heart to. When you’re feeling sad or frustrated
just remember there are people around you who love you and care about you
very much. One thing I want you to remember is please do not label yourself as "Laila,
the girl with diabetes", but the opposite. I truly believe you are so much more
than this and do not this want ugly disease to define who you are. Dream big!!
Love,
Josie
P.S. I will always have the good cheese for you!
Sunday, May 20, 2012
Diabetes Blog Week: Post #7
True heroism consists in being superior to the ills of life, in whatever shape they may challenge us to combat. -Napoleon Bonaparte
This post is titled "Diabetes Hero". As if there's ever been any question, my hero is about 3'6", weighs around 51 pounds, has chocolate brown eyes and the most beautiful curls. She's 6 years old and is sound asleep, wrapped in her princess comforter and dreaming of a better tomorrow.
Laila isn't quite old enough to blog, and unfortunately, we don't know anyone with diabetes. She's seen a few people here and there with a pump, but no one we've ever been in contact with. This post is entirely about her. She's amazing, to say the least, and she'll forever band e my hero.
Occasionally, I remember "D-Day", and the things that stand out most to me are not the tears, the needles, or the sleepless nights, but the smiles, the laughter, and the perseverance I saw in Laila's eyes. I knew the minute she was finally allowed to eat, after a painstaking 24 hours, that diabetes wasn't going to own her, she was going to own it.
The first few days were hard, I'm not sure who shed more tears, Laila, Dustin, or myself. By the end of her hospital stay, it was Laila who was comforting me, not the other way around. She doesn't know the true impact this disease is going to have on her life, she only sees tomorrow. The tears that I shed were for the rest of her life, for the future she's going to endure, for the loss of her innocence.
A hero, in my opinion, is someone who looks into the face of adversity, and doesn't back down. Laila has no choice but to do exactly this. Her fingers are polka-dotted with scars, her arms and legs just the same. This doesn't make her any less beautiful, smart, funny, or independent. Laila doesn't let her diabetes slow her down, she loves to play, read, dance, run, swim, and eat. There's nothing she can't do, because she believes in herself, and we believe in her, too.
If I could be more like anyone, I'd choose to be more like Laila. She inspires me to be strong, to ignore what others think and to follow my dreams. One day, when she's more comfortable, she's going to make a great role model for other children with diabetes. She's wise beyond her years, she understands the seriousness of this disease, sometimes I think, better than anyone. I know she's in inspiration to others, and that makes me even more proud to be her mom.
Laila Bernadette Smith, you are truly my hero.
This post is titled "Diabetes Hero". As if there's ever been any question, my hero is about 3'6", weighs around 51 pounds, has chocolate brown eyes and the most beautiful curls. She's 6 years old and is sound asleep, wrapped in her princess comforter and dreaming of a better tomorrow.
Laila isn't quite old enough to blog, and unfortunately, we don't know anyone with diabetes. She's seen a few people here and there with a pump, but no one we've ever been in contact with. This post is entirely about her. She's amazing, to say the least, and she'll forever band e my hero.
Occasionally, I remember "D-Day", and the things that stand out most to me are not the tears, the needles, or the sleepless nights, but the smiles, the laughter, and the perseverance I saw in Laila's eyes. I knew the minute she was finally allowed to eat, after a painstaking 24 hours, that diabetes wasn't going to own her, she was going to own it.
The first few days were hard, I'm not sure who shed more tears, Laila, Dustin, or myself. By the end of her hospital stay, it was Laila who was comforting me, not the other way around. She doesn't know the true impact this disease is going to have on her life, she only sees tomorrow. The tears that I shed were for the rest of her life, for the future she's going to endure, for the loss of her innocence.
A hero, in my opinion, is someone who looks into the face of adversity, and doesn't back down. Laila has no choice but to do exactly this. Her fingers are polka-dotted with scars, her arms and legs just the same. This doesn't make her any less beautiful, smart, funny, or independent. Laila doesn't let her diabetes slow her down, she loves to play, read, dance, run, swim, and eat. There's nothing she can't do, because she believes in herself, and we believe in her, too.
If I could be more like anyone, I'd choose to be more like Laila. She inspires me to be strong, to ignore what others think and to follow my dreams. One day, when she's more comfortable, she's going to make a great role model for other children with diabetes. She's wise beyond her years, she understands the seriousness of this disease, sometimes I think, better than anyone. I know she's in inspiration to others, and that makes me even more proud to be her mom.
Laila Bernadette Smith, you are truly my hero.
Saturday, May 19, 2012
Diabetes Blog Week: Post #6
Education is the key to survival with diabetes. Check your sugar, check it often, and pay attention to the patterns. There are always patterns.
This post is titled "Saturday Snapshot". Rather than take new photos today, I decided to revisit some of the ones we've taken in the past. I love looking back upon where we've been, it gives me hope and encouragement to the future knowing we've come so far.
 |
| This was a 3 month supply of syringes, pen needles, and ketone strips. This is just a fraction of Laila's supplies. |
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| High sugars make for a sad Laila. |
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| Giving herself an injection, Laila is very independent. |
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| Rule of 15: 15 grams of fast-acting carbohydrates, retest 15 minutes later. |
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| The beginning of a long evening. |
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| Unknown trouble! |
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| *Not the highest we've ever seen, but still scary. |
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| Hopes of relief! |
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| Glad to see a number below 500 |
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| This is scary low. |
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| This dancer has diabetes! |
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| One of my rules is Laila must always have some type of identification on. Always. |
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| Ready for a swim? Not just yet! |
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| Endocrinology visits every 3 months. |
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| High sugars feel awful. |
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| Time for a pump site change! |
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| This is a special necklace I had made for Laila. The back identifies her, that she's a type 1, and she wears an insulin pump. |
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| This is Laila's favorite place to wear her pump. Right in her back pocket! |
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| Another sad face. Starburst to the rescue! |
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| This is one of my favorite photos. I still do 2am checks. Religiously. A middle of the night snack with my baby. |
I hope these photos shed some life onto the ups and downs of the diabetes roller coaster, there's rarely a moment where the first thing out of my mouth doesn't have to do with diabetes. I have hopes and dreams of a cure one day. Until that day comes, we'll keep checking. Knowledge is power.
Friday, May 18, 2012
Diabetes Blog Week: Post #5
Laila is very special to me, and her opinion is always important, no matter how small the matter or issue at hand. I love blogging for her, and hope one day she'll follow in my footsteps and love writing as much as I do.
This post is titled "What They Should Know". There are hundreds of things I wish I could tell people about diabetes, but I decided to keep it to a minimum, there are a couple points I'd really like to stress, and I think Laila and I are on the same track.
"What is one thing you would tell someone that doesn't have diabetes about living with diabetes?"
There's only one thing Laila can't do now that she has diabetes, and that's create insulin. She can do anything she sets her mind to, mentally, physically, and emotionally. Laila is unstoppable, and I remind her of this all the time. I've watched her overcome so many obstacles in such a short amount of time, there's nothing that's going to hold her back now. She's at the top of her class, she is absolutely beautiful, funny, strong, independent, athletic and she loves to be a kid. Laila has fears just like any other child, dreams and aspirations, too. With the medicine and technology available, and the power she has from testing her sugars on a regular basis, there's not a thing that's going to hold her back, absolutely not diabetes.
Diabetes isn't just "diabetes". It's a lot more than a name for this terrible disease, it's the management that goes along with it. Day and night. Night and day. It never goes away, and it never will. Diabetes is the hours spent advocating for your child with the school, the dance studio, the hospital. It's the sleepless nights you spend stumbling down the hallway with a meter and a flashlight to check blood sugars. It's that feeling of your heart dropping when a high number flashes on the screen before you, and it's the triumphant feeling you have when you double check yourself and find your instincts were right after all. Diabetes is always being prepared, having fast-acting sugars on hand, side by side to the dreaded Glucagon pen, it's checking your supplies every time you leave the house. It's smiling through the tears, pushing through the anger and sadness to find joy in the things you love. Dismissing the sideways glances and stares, the comments you're not supposed to hear, the feeling of being totally, positively helpless. Diabetes doesn't discriminate, it knows no age, gender, race, or religious affiliation, it takes you by surprise and it doesn't hold back. It's not anyone's fault, and it's not curable. These things constantly weigh on my mind. If you never take another thing away from me or this blog, just remember this: no one asked for this, so please be patient. It's all we've got to hold on to.
I've decided to let Laila do some of the talking. She may only be 6, but she's wise beyond her years, and she has something she'd like to say.
"What is one thing you would tell someone that doesn't have diabetes about living with diabetes?"
Last August, at a visit to the doctor, we decided I was going to get an insulin pump. I remember that I saw a bunch of different types of pumps, a lot of colors to choose from, and even different colors for the site. I really liked it all. I was excited to get one because I didn't want to do shots every time I was eating. Now that I have the pump, it's a lot better because I can eat food whenever I want to and I can just put it in my pump. I like having my pump, it's my favorite color-it's purple!
Just because I have diabetes doesn't mean I can't eat whenever I want to. It doesn't mean I have to go hungry, it just means that I can't eat every minute. I have to check my sugar for breakfast, lunch, and dinner. Sometimes I check my sugar when I feel low. Only if I feel low. How would you feel if you had diabetes?
Having diabetes is the only thing that makes me different from other people. I still like to bake with mommy, I love going to dance, and I like to play with my little brother and sister. I can still go swimming, eat cupcakes, and do all the other things kids my age do. I just lost my front teeth! Diabetes doesn't make me any less fun, I just need to check my sugar every few hours.
Thanks for reading my blog!
Love, Laila
This post is titled "What They Should Know". There are hundreds of things I wish I could tell people about diabetes, but I decided to keep it to a minimum, there are a couple points I'd really like to stress, and I think Laila and I are on the same track.
"What is one thing you would tell someone that doesn't have diabetes about living with diabetes?"
There's only one thing Laila can't do now that she has diabetes, and that's create insulin. She can do anything she sets her mind to, mentally, physically, and emotionally. Laila is unstoppable, and I remind her of this all the time. I've watched her overcome so many obstacles in such a short amount of time, there's nothing that's going to hold her back now. She's at the top of her class, she is absolutely beautiful, funny, strong, independent, athletic and she loves to be a kid. Laila has fears just like any other child, dreams and aspirations, too. With the medicine and technology available, and the power she has from testing her sugars on a regular basis, there's not a thing that's going to hold her back, absolutely not diabetes.
Diabetes isn't just "diabetes". It's a lot more than a name for this terrible disease, it's the management that goes along with it. Day and night. Night and day. It never goes away, and it never will. Diabetes is the hours spent advocating for your child with the school, the dance studio, the hospital. It's the sleepless nights you spend stumbling down the hallway with a meter and a flashlight to check blood sugars. It's that feeling of your heart dropping when a high number flashes on the screen before you, and it's the triumphant feeling you have when you double check yourself and find your instincts were right after all. Diabetes is always being prepared, having fast-acting sugars on hand, side by side to the dreaded Glucagon pen, it's checking your supplies every time you leave the house. It's smiling through the tears, pushing through the anger and sadness to find joy in the things you love. Dismissing the sideways glances and stares, the comments you're not supposed to hear, the feeling of being totally, positively helpless. Diabetes doesn't discriminate, it knows no age, gender, race, or religious affiliation, it takes you by surprise and it doesn't hold back. It's not anyone's fault, and it's not curable. These things constantly weigh on my mind. If you never take another thing away from me or this blog, just remember this: no one asked for this, so please be patient. It's all we've got to hold on to.
I've decided to let Laila do some of the talking. She may only be 6, but she's wise beyond her years, and she has something she'd like to say.
"What is one thing you would tell someone that doesn't have diabetes about living with diabetes?"
Last August, at a visit to the doctor, we decided I was going to get an insulin pump. I remember that I saw a bunch of different types of pumps, a lot of colors to choose from, and even different colors for the site. I really liked it all. I was excited to get one because I didn't want to do shots every time I was eating. Now that I have the pump, it's a lot better because I can eat food whenever I want to and I can just put it in my pump. I like having my pump, it's my favorite color-it's purple!
Just because I have diabetes doesn't mean I can't eat whenever I want to. It doesn't mean I have to go hungry, it just means that I can't eat every minute. I have to check my sugar for breakfast, lunch, and dinner. Sometimes I check my sugar when I feel low. Only if I feel low. How would you feel if you had diabetes?
Having diabetes is the only thing that makes me different from other people. I still like to bake with mommy, I love going to dance, and I like to play with my little brother and sister. I can still go swimming, eat cupcakes, and do all the other things kids my age do. I just lost my front teeth! Diabetes doesn't make me any less fun, I just need to check my sugar every few hours.
Thanks for reading my blog!
Love, Laila
Diabetes Blog Week: Post #4
I hate admitting this, but I lack in the imagination department. I'm not one for fantasy worlds, creatures, alternative lifestyles, and I have a terrible time creating things in my own mind. Thank heavens for books, blogs, and magazines, or I'd be one stiff individual.
The title of this post is: "Fantasy Diabetes Device". Assuming this device isn't capable of creating or sustaining a cure for diabetes, and Laila already has the next best thing-an insulin pump-I've got to pull something out of the woodwork here and really make this device fantastic.
If I could create a device for Laila, and all the other diabetics out there, to make their life just a little easier, this is what it would do:
*Photo recognition: this bad ass machine of mine would be able to, with its built in camera, take a digital photo and be able to scan and calculate the number of carbs in any food, anywhere, anytime. The sky's the limit here, folks, no more staring at bowls of pasta with uncertainty, buffets will no longer be a death trap, birthday parties and mom & pop restaurants will be calling your name.
*Lifetime battery life: solar energy is the way to go with this little device, it's going to charge itself from the sun every day, and last forever. No more supporting Energergizer every time the batter runs low, just step outside for a breather and a quick recharge.
*Voice recognition: they can do it with phones, they can surely do it with diabetes. you should be able to talk to this little machine, more like a personal assistant than a diabetes device, it would be able to tell you on command your latest blood sugar, your last bolus, your current basal rate, your plans for the day, and even suggest where you should go have dinner and drinks with your friends.
The title of this post is: "Fantasy Diabetes Device". Assuming this device isn't capable of creating or sustaining a cure for diabetes, and Laila already has the next best thing-an insulin pump-I've got to pull something out of the woodwork here and really make this device fantastic.
If I could create a device for Laila, and all the other diabetics out there, to make their life just a little easier, this is what it would do:
*Photo recognition: this bad ass machine of mine would be able to, with its built in camera, take a digital photo and be able to scan and calculate the number of carbs in any food, anywhere, anytime. The sky's the limit here, folks, no more staring at bowls of pasta with uncertainty, buffets will no longer be a death trap, birthday parties and mom & pop restaurants will be calling your name.
*Lifetime battery life: solar energy is the way to go with this little device, it's going to charge itself from the sun every day, and last forever. No more supporting Energergizer every time the batter runs low, just step outside for a breather and a quick recharge.
*Voice recognition: they can do it with phones, they can surely do it with diabetes. you should be able to talk to this little machine, more like a personal assistant than a diabetes device, it would be able to tell you on command your latest blood sugar, your last bolus, your current basal rate, your plans for the day, and even suggest where you should go have dinner and drinks with your friends.
Diabetes Blog Week: Post #3
"When you make a mistake, don't look back at it long. Take the reason of the thing into your mind and then look forward. Mistakes are lessons of wisdom. The past cannot be changed. The future is yet in your power."
Hugh White (1773-1840)
This post is titled: "One Thing to Improve". I'm thankful for a reason to evaluate things, even if at times, it's not easy. Diabetes is more than just a blood sugar check every few hours, or tapping a few numbers into an insulin pump for an afternoon snack. It's every day. It's every hour. It's every minute. Sometimes, I think we forget.
As a parent of a diabetic, I put her needs before all else, and sometimes, that's not entirely fair. I find there are times where I'll reach for what's easy rather than what is right. A pack of fruit snacks that are labeled individually over a piece of fruit I have to get the scale out and weigh: this is a fine example of taking the easy route. It's not fair, and it's not all the time, but it's been known to happen. There are things I just won't buy at the store anymore because they're a pain in the ass, like goldfish crackers, potato chips, and canned fruit. These are just mere examples, but there is still truth to be told. When I pack our bags for a day trip to the doctor, shopping, or a long car ride, Laila is always at the top of my list. I find I've forgotten diapers, shoes, even my car keys, all at the expense of being positive I have her meter, glucagon, insulin pen, juice, etc.
Laila does so well managing her diabetes, I hate to place any blame. She's been diagnosed for close to two years, and has had no serious complications as of yet. Her biggest downfall, if not her only one, is removing her lancets from her meter pack when she's done. I find them in there almost every time I check. She doesn't reuse them, she just lets them sit in there until she needs to put a new one in. Occasionally, I'll find strips laying on the floor of my car, next to the garbage bin in the kitchen, or just tossed onto the counter. A rarity at best, but my fear is it'll be a prelude to the future of a teenage diabetic.
I think we all have things to improve on, this list could go on and on, but pinpointing what we can do better, and actually improving those things, that's what counts. Here's to a better tomorrow, today.
Diabetes Blog Week: Post #2
I'm writing this blog for Laila, with the hopes that one day she can look back and remember where she's been, and see where she will one day be. At only 6, she knows no different than to just take the blows as they come. For this, I'm grateful.
The second post in this series is titled: "One Great Thing". This post is about one great thing you do when it comes to managing your diabetes. Nothing is too big or too small to celebrate doing well. Even though I help Laila when it comes to managing her diabetes, I think it's only fair that not just I be praised, but Laila as well. To say she's independent, strong, intelligent, those words don't cover the amazing person she really is. She's much more than those things; to me, she'll always be my baby.
Diabetes is a scary unknown. There are facts out there, and like any math equation, there are right and wrong answers. When it comes to the grey areas, the questions with no real concrete answer, there is only one way to survive-arm yourself with knowledge. Make an educated guess. Take a chance and follow up. I may not be the one with diabetes, but I will stop at nothing to make sure Laila is as healthy as possible. The one thing I like to think I'm the best at when it comes to diabetes management is being prepared. I make Laila check her sugar, and I make her check it often. I chart her numbers, I memorize the carbohydrates for food she likes, I read books, I always have extra supplies, I am prepared. Never has a doctor visit come and gone where I didn't leave the office feeling satisfied that I've done my very best to ensure her health and safety.
Laila has tackled this disease head on. The times she complains are few and far between, and it makes my heart swell knowing how well she's handled this from day one. I could list every little thing Laila does well when it comes to her diabetes, but the one thing that stands out more than anything is her independence. Within just a few short weeks of diagnosis, she was giving herself injections. After switching from syringes to an insulin pen, she completely took over her shots, and now completely owns her pump. I sit by, idly, and watch as she meticulously changes her site, checks her own sugars, and measures her snacks. She's so wise beyond her years, and I think she's off to a great start. Nothing has slowed her down, and not a single person in this house is going to let diabetes get in the way of our lives, it's just a stepping stone to greatness.
The second post in this series is titled: "One Great Thing". This post is about one great thing you do when it comes to managing your diabetes. Nothing is too big or too small to celebrate doing well. Even though I help Laila when it comes to managing her diabetes, I think it's only fair that not just I be praised, but Laila as well. To say she's independent, strong, intelligent, those words don't cover the amazing person she really is. She's much more than those things; to me, she'll always be my baby.
Diabetes is a scary unknown. There are facts out there, and like any math equation, there are right and wrong answers. When it comes to the grey areas, the questions with no real concrete answer, there is only one way to survive-arm yourself with knowledge. Make an educated guess. Take a chance and follow up. I may not be the one with diabetes, but I will stop at nothing to make sure Laila is as healthy as possible. The one thing I like to think I'm the best at when it comes to diabetes management is being prepared. I make Laila check her sugar, and I make her check it often. I chart her numbers, I memorize the carbohydrates for food she likes, I read books, I always have extra supplies, I am prepared. Never has a doctor visit come and gone where I didn't leave the office feeling satisfied that I've done my very best to ensure her health and safety.
Laila has tackled this disease head on. The times she complains are few and far between, and it makes my heart swell knowing how well she's handled this from day one. I could list every little thing Laila does well when it comes to her diabetes, but the one thing that stands out more than anything is her independence. Within just a few short weeks of diagnosis, she was giving herself injections. After switching from syringes to an insulin pen, she completely took over her shots, and now completely owns her pump. I sit by, idly, and watch as she meticulously changes her site, checks her own sugars, and measures her snacks. She's so wise beyond her years, and I think she's off to a great start. Nothing has slowed her down, and not a single person in this house is going to let diabetes get in the way of our lives, it's just a stepping stone to greatness.
Diabetes Blog Week: Post #1
This is the 3rd annual Diabetes Blog Week, and even though I'm behind, I'm proud to finally be able to take part in such an awesome event! I want nothing more than to find a cure for this awful disease, to see my baby girl pump-free, and to educate along the way. I hope you take the time to educate yourselves, ask questions, and open your mind, heart, and soul to the unknown.
The first post in this series is titled: "Find a Friend". This post is about a friend you've found thanks to the diabetes online community. I have put this post off because, honestly, we don't really know anyone else with diabetes. A few people here and there have a family member or friend with it, but no one we're friends with deals with it on such an intense level as we do.
That being said, I do follow a few blogs from other families about their struggles, and knowing I'm not alone helps. Even if I don't discuss carb ratios, midnight blood sugar checks, or endo visits with these folks, I know they're there and experiencing the same anxieties, joys, and everyday highs and lows we are.
My favorite diabetes blog is from an amazing, inspirational girl named Kelly Kunik. Her blog, "Diabetesaliciousness" is the highlight of my week. When I have the time to sit and read, I'm filled with hope. Living alone, dealing with the everyday grind of being a single adult with diabetes, and the personal struggles that go beyond, deeper into her soul, it's awesome. One day, I know Laila is going to want to move out, live on her own, and find her independence. This blog reminds me all these things and more are possible for her. The world is in the palm of her hand, and she's unstoppable.
The first post in this series is titled: "Find a Friend". This post is about a friend you've found thanks to the diabetes online community. I have put this post off because, honestly, we don't really know anyone else with diabetes. A few people here and there have a family member or friend with it, but no one we're friends with deals with it on such an intense level as we do.
That being said, I do follow a few blogs from other families about their struggles, and knowing I'm not alone helps. Even if I don't discuss carb ratios, midnight blood sugar checks, or endo visits with these folks, I know they're there and experiencing the same anxieties, joys, and everyday highs and lows we are.
My favorite diabetes blog is from an amazing, inspirational girl named Kelly Kunik. Her blog, "Diabetesaliciousness" is the highlight of my week. When I have the time to sit and read, I'm filled with hope. Living alone, dealing with the everyday grind of being a single adult with diabetes, and the personal struggles that go beyond, deeper into her soul, it's awesome. One day, I know Laila is going to want to move out, live on her own, and find her independence. This blog reminds me all these things and more are possible for her. The world is in the palm of her hand, and she's unstoppable.
Monday, April 30, 2012
Guest Blogger: Bobbi-Jo Asher
All of these words clearly describe Laila. All of these words but one define her. Laila refuses to be defined by her diabetes.
We moved to Maricopa last summer and had the pleasure of meeting Joli and her family right away. I’m proud to call her a friend and grateful she shares her three wonderful children with my family.
Recently, we were going out horseback riding for the afternoon and invited Laila along. This would be the longest Laila would be in my care since I’ve known her and though I didn’t think twice about inviting her, I was scared. I doubt she was scared for a second. So many “what ifs” go through your mind when caring for a child that could be perfectly fine one moment and crashing the next. She rode and rode and played and played and finally approached me and said, “I think I should drink my juice.” Sure enough, she checked and she was low. I WISH I were that in tune with my body. She drank her juice, had a snack and in an instant, felt 100% better.
There are times I forget that Laila has diabetes. I don’t forget because I don’t care. I forget because she manages it so well and is just plain and simply Laila. She doesn’t act like the poor little diabetic girl and her momma certainly doesn’t treat her like one. This is clearly evidence of their outstanding characters. Joli with the support of her husband Dustin have treated Laila like any other kid. What makes her special is her sweet, loving personality. NOT THE FACT THAT SHE HAS DIABETES.
Sunday, March 25, 2012
Remembering D-Day
Normally, I really enjoy reading other blogs, they make me laugh, cry, and sometimes even inspire me with new ideas to write my own. Last night was no exception, thankfully I had a box of tissue and a few hours to spare when I sat down to start reading. My usual blogs of choice contain recipes, family photos, and current events, but last night, something caught my eye. A fellow mom of a diabetic had updated her blog after a few months, and I was curious to see what new obstacles life had thrown at them, and how they handled the unexpected.
As I read one writer's post about the diagnosis of her daughter, it reminded me about the day Laila was officially diagnosed. I can remember exactly what she was wearing, what I packed for her to eat at school that day for lunch, where I was standing when I heard the news, and how my heart sank to my stomach when the doctor told me to sit down. My initial response was feeling like my entire world was over, I knew she would never be free of this disease and it took only seconds to truly sink in the severity of what was happening to her at that very moment. It all made sense, it added up so clearly: the extreme thirst, the excess fatigue, the weight loss, lack of appetite-every single symptom, she had them all. How could I have let this go on for as long as I did? I can still picture her thin bones and sunken eyes. It took a hold of her so fast, it was literally an overnight transformation from my smiling little girl to someone I could hardly recognize.
It was a Thursday night when I mentioned to Dustin I thought something was wrong. We debated taking Laila to the emergency room, what we thought it was, and what we may be able to do to help her before taking her into the doctor. By Monday morning, things were looking so bad I kept her home from school. She was literally wilting away before my eyes, and I felt solely responsible. After a handful of blood tests and some cream for her dry, cracked hands, we were well on our way home. The very next day when my phone rang, I knew the results were in. Rush her to the children's hospital? Pack her a bag? Find a sitter? I was dizzy in my own thoughts, I didn't know where to begin. Dustin picked up Laila from school and drove her into Phoenix, and I made arrangements for Kenadi and Dustin Jr.
Walking into the hospital to find Laila in a hospital bed with tubes in her arm was extremely difficult. I painted on a smile and unloaded my things. I brought a coloring book, markers, crayons, puzzles, music, and even her favorite stuffed animal; I took along anything I could think of that would help this awful transition go just a tiny bit smoother. Seeing her there made it so final, so serious, so real. Once a room was available, Laila was admitted to PICU (pediatric intensive care unit), and our diabetic journey began. Hourly blood sugar checks ensued until her blood glucose had dropped low enough on its own for her to be able to eat and adapt to insulin injections. Holding her still so the nurse could check her sugar, it was grueling. Her screams pierced my ears, while her tears broke my heart.
The "diabetes bible" the nursing staff armed us with was easily four inches thick, full of information, statistics, and terrifying facts. I felt as though I'd never be able to take Laila home and feel confident enough to care for her, I immediately programmed the hospital's phone number into my phone, and started asking questions. I knew the road ahead of us was going to be a long one, I better jump on board and set the bar high. Each meal was a learning process, how to count the carbohydrates for each item on her plate, how to calculate her blood sugar corrections, and how to determine how much insulin to administer. We learned how to "draw up", using a syringe and bottle of insulin, and I gave Laila her very first butt shot. It took two people to hold her down, and one to hold my arm still, I still don't know who cried harder, Laila or me.
Having to leave her in the hospital for four nights in a row was one of the hardest things I've ever faced. Trusting the doctors, nurses, and my husband to care for her, it ripped at my heart. I cried to myself on the drive home each night, I went to sleep and cried some more. I wallowed in my sorrows of my life and how it had changed, and how this was going to shape her every day, her entire future. Each night was worse than the one before as images of the life she'd never have flashed before my eyes.
It has now been 18 months since Laila's diagnosis, and I'm proud to be the mother of a type 1 diabetic. The things I've learned about Laila, myself, my husband, our marriage and family don't even compare to the fears I felt that dreaded day. We all have bad days, sorrowful times that remind us where we've been, and what's in store for us, but without those days, the good days wouldn't be as important. Every once in a while, I find myself reaching into the back of Laila's closet and pulling out her purple plaid shirt. I take it down, hold it in my hands, and remember that day. She has long grown out of that shirt, but I still can picture a time when it hung so loosely on her. The days of syringes are long behind us, as we have been "pumping" for 6 solid months. For Laila, school is going great, dance class is a blast, and weekends are always packed full of fun. Life these days is pretty amazing, even with type 1 diabetes. For me, life is as busy as ever, so busy sometimes I even forget about that dreaded day. Lucky for me, I kept that gorgeous purple shirt, it's just the reminder I need.
As I read one writer's post about the diagnosis of her daughter, it reminded me about the day Laila was officially diagnosed. I can remember exactly what she was wearing, what I packed for her to eat at school that day for lunch, where I was standing when I heard the news, and how my heart sank to my stomach when the doctor told me to sit down. My initial response was feeling like my entire world was over, I knew she would never be free of this disease and it took only seconds to truly sink in the severity of what was happening to her at that very moment. It all made sense, it added up so clearly: the extreme thirst, the excess fatigue, the weight loss, lack of appetite-every single symptom, she had them all. How could I have let this go on for as long as I did? I can still picture her thin bones and sunken eyes. It took a hold of her so fast, it was literally an overnight transformation from my smiling little girl to someone I could hardly recognize.
It was a Thursday night when I mentioned to Dustin I thought something was wrong. We debated taking Laila to the emergency room, what we thought it was, and what we may be able to do to help her before taking her into the doctor. By Monday morning, things were looking so bad I kept her home from school. She was literally wilting away before my eyes, and I felt solely responsible. After a handful of blood tests and some cream for her dry, cracked hands, we were well on our way home. The very next day when my phone rang, I knew the results were in. Rush her to the children's hospital? Pack her a bag? Find a sitter? I was dizzy in my own thoughts, I didn't know where to begin. Dustin picked up Laila from school and drove her into Phoenix, and I made arrangements for Kenadi and Dustin Jr.
Walking into the hospital to find Laila in a hospital bed with tubes in her arm was extremely difficult. I painted on a smile and unloaded my things. I brought a coloring book, markers, crayons, puzzles, music, and even her favorite stuffed animal; I took along anything I could think of that would help this awful transition go just a tiny bit smoother. Seeing her there made it so final, so serious, so real. Once a room was available, Laila was admitted to PICU (pediatric intensive care unit), and our diabetic journey began. Hourly blood sugar checks ensued until her blood glucose had dropped low enough on its own for her to be able to eat and adapt to insulin injections. Holding her still so the nurse could check her sugar, it was grueling. Her screams pierced my ears, while her tears broke my heart.
The "diabetes bible" the nursing staff armed us with was easily four inches thick, full of information, statistics, and terrifying facts. I felt as though I'd never be able to take Laila home and feel confident enough to care for her, I immediately programmed the hospital's phone number into my phone, and started asking questions. I knew the road ahead of us was going to be a long one, I better jump on board and set the bar high. Each meal was a learning process, how to count the carbohydrates for each item on her plate, how to calculate her blood sugar corrections, and how to determine how much insulin to administer. We learned how to "draw up", using a syringe and bottle of insulin, and I gave Laila her very first butt shot. It took two people to hold her down, and one to hold my arm still, I still don't know who cried harder, Laila or me.
Having to leave her in the hospital for four nights in a row was one of the hardest things I've ever faced. Trusting the doctors, nurses, and my husband to care for her, it ripped at my heart. I cried to myself on the drive home each night, I went to sleep and cried some more. I wallowed in my sorrows of my life and how it had changed, and how this was going to shape her every day, her entire future. Each night was worse than the one before as images of the life she'd never have flashed before my eyes.
It has now been 18 months since Laila's diagnosis, and I'm proud to be the mother of a type 1 diabetic. The things I've learned about Laila, myself, my husband, our marriage and family don't even compare to the fears I felt that dreaded day. We all have bad days, sorrowful times that remind us where we've been, and what's in store for us, but without those days, the good days wouldn't be as important. Every once in a while, I find myself reaching into the back of Laila's closet and pulling out her purple plaid shirt. I take it down, hold it in my hands, and remember that day. She has long grown out of that shirt, but I still can picture a time when it hung so loosely on her. The days of syringes are long behind us, as we have been "pumping" for 6 solid months. For Laila, school is going great, dance class is a blast, and weekends are always packed full of fun. Life these days is pretty amazing, even with type 1 diabetes. For me, life is as busy as ever, so busy sometimes I even forget about that dreaded day. Lucky for me, I kept that gorgeous purple shirt, it's just the reminder I need.
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