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.

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.

High sugars make for a sad Laila.

Giving herself an injection, Laila is very independent. 

Rule of 15: 15 grams of fast-acting carbohydrates,
retest 15 minutes later. 

The beginning of a long evening.

Unknown trouble!

*Not the highest we've ever seen, but still scary.

Hopes of relief!

Glad to see a number below 500

This is scary low. 

This dancer has diabetes!

One of my rules is Laila must always have some type
of identification on. Always.

Ready for a swim? Not just yet!

Endocrinology visits every 3 months.

High sugars feel awful.

Time for a pump site change!

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.

This is Laila's favorite place to wear her pump.
Right in her back pocket!
Another sad face. Starburst to the rescue!

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

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.

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.

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.