Friday, March 22, 2013

When She Cries

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.

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.

Thursday, November 1, 2012


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!

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.

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.

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