One Year Diabetaversary

Today marks one year since Ryan was diagnosed with Type One Diabetes and our world was forever changed.
  I'm really crappy about keeping up with this blog considering the last time I wrote was November but life gets busy and to be honest I didn't have the right words to express what I felt anyhow.
  To say it has been a rough year would be an extreme understatement. I've never known Fear and Anxiety the way I've gotten to know them over the past twelve months. We are close friends now. I looked in the mirror last week and realized that I had let myself go in such an outstanding way that I could probably audition for the new season of American Horror Story: Freak Show.
  I've gained weight (EAT ALL YOUR FEELINGS!), I wear my hair in a ponytail or bun nearly every day, I'm rocking the ombre look on accident AKA I've got some roots that need attention, and I've started leaving the house without makeup or sometimes, without even looking in a mirror at all.
  I don't know if this is normal behavior or if I am handling this all so ungracefully as to be epic, but there it is...the cold, hard, truth.
  So, I am currently trying to pull myself out of this rut I have dug for myself and pay closer attention to my own health and needs as well as juggle everything that comes with having a 7 year old with diabetes.
  Lately, instead of things being easier to control, Ryan's sugars have been higher than usual and hard to keep in the normal range. After a weekend spent in Lafayette with friends who also have a T1D son, I've decided its time for a pump. Let's shake things up around here all over the place, right?!
  This will mean that my family will have to learn a whole new way of taking care of Ryan but hopefully it will make things easier and less painful for him since there will be no more injections. I will attempt to write about the switch over in order to help those that may be considering the same and want to know the dirty truth of the matter.

  When I would think about this date over the past months, the one year anniversary, I would wonder to myself about how things would be different or how they wouldn't be.
  To be honest, I may know more now but it's still not easy. I still think about it every minute of the day. I still question my every action. I still hate giving injections and finger pricks because, even though he doesn't complain as much anymore, he still feels pain and that kills me every time. I still worry while he is at school. I still hate endocrinology appointments and all the lab work because I know how much Ry hates it and because it just freaking sucks.
  But we trudge on everyday, doing what we have to do in order to keep him healthy. Some days are better than others as with anything...and some days I want to crawl into a hole and sleep for a few months. I try to remind myself on those days that it could be so much worse. I could be one of the parents that has a sick chid with no treatment options and an hourglass that is running out of sand. I pray for those parents because I can't even fathom it. But I pray for Ry too, and all the other families that are coping with T1D everyday.
  I know I sound very doom and gloom so I feel like I should also say that it's not all thunder clouds over our heads and piss in our cereal everyday...it really isn't. This year we took Ryan to the beach. It was magical watching him see the ocean for the first time...though getting him to leave the beach was a different story. Meltdown central...the boy loves the water. But a year ago I wouldn't have even thought about traveling with him all the way to Florida. The very idea of it scared me to death. What if this happens, what if that happens, what if I forget this or that, we will be so far away from his doctors, this will be so difficult, and on and on. But it was fine, great even, and he had the time of his life.

  We've been to birthday parties and played at the park. He's seen a monster truck show and every kid movie that came out in the theater...while eating popcorn (his fav). He went on his first fishing trip in a boat and spent hours playing in a pool with his friends. He graduated from Kindergarten, had his tonsils taken out, and camped out in the back yard with his dad. All the things that any non diabetic child can do...Ryan can do as well.  We just have to plan ahead, pack all his supplies, and check his sugars.
  This year I would like to sign him up for karate and swimming lessons. I avoided sports last year out of fear but I think we are ready to get back in the game again...and try out new things too.

Ryan and his daddy fishing

7th birthday party

Ryan and my mom at the theater

  I can also say that we don't have to worry about a lot of the "firsts" in the second year. The first Halloween, the first Thanksgiving, the first Christmas and New Years, and his birthday party, etc...etc... Been there done that...bring it on.

So for those that might still be in that first year haze, don't fret. One day you will open your eyes and see things clearly and start to put the pieces back together again only in a different pattern than before. And for those that never got in a haze, for those that still managed to fix their hair everyday and go about life as usual only with more equipment...stay awesome. You're doing it right too. Because I don't really know if there is a wrong way to go through this experience emotionally. You just get through it and while you are working it out, life happens anyway.

 Childhood happens anyway. 

On September 13th we will be walking for the cure. If you would like to donate to our team here is the link. 

http://www2.jdrf.org/site/TR?fr_id=3958&pg=team&team_id=157423

Any little bit helps. I hope that one day Ryan can say he used to have diabetes. 

XOXOX

That Moment When: The Juvenile Diabetes Edition

That moment when you hear your child cough/move/sigh/talk in the middle of the night and you lay in bed for three seconds trying to decide if its insane to jump up to check on him....just before jumping up to check on him, blood sugar meter in hand.

That moment when you miscount carbs and quickly grab something off his plate, hoping he wont notice.

That moment when you don't know if he has high blood sugar or if he is just being a normal, hyper child.

That moment when you don't know if he has low blood sugar or if he is just in a crabby mood.

That moment someone overhears you say,"He's been high all day."

That moment when you don't get enough blood to check his sugar and the meter reads error, causing you to use another strip and sometimes prick another finger while saying I'm sorry, I'm sorry over and over as he complains or cries.

That moment when you check your child out of school to avoid classroom parties filled with candy and cookies.

That moment when someone asks you how your child is doing and you give them blood sugar number, whether they know what it means or not. (Opps...sorry.)

That moment before the meter tells you what the reading is and you say over and over in your head, "Please be good, please, please be good."

That moment when you find out another parent is caring for a T1D child and you genuinely feel for them because you know exactly what they are dealing with everyday.

That moment when you google "cure for type one diabetes" and feel hopeful and sad all at the same time.

That moment when you come home from the hospital with a newly diagnosed child and it's 100 times more stressful than when you brought him home as a newborn.

That moment when friends or family try to understand what you deal with every day but really can't. The trying means a lot though.

That moment when you go out to eat and your child gets embarrassed at shot time because he doesn't want anyone to see him get his injection.

That moment when anyone from his school calls during the day and your first reaction is to panic.

That moment when you let yourself think about all the scary, horrible things that can happen if you don't stay on top of this every single day.

That moment when your alarm goes off at 2:30 AM to do another night time blood sugar check and the weight of this condition sits on your shoulders as you fumble through the house, looking for his meter.

That moment when you tuck a glucagon emergency kit into your back pocket when you child wants to go for a bike ride/walk around the neighborhood or even just play outside in the yard.

That moment when your child tells you his hands/legs/arms feel shaky and your heart drops to your stomach in a twinge of fear/worry/panic but you calmly check his sugar and feed him something so he wont see how much all of this scares you.

That moment when you have to tell him that he can't have any more cake even though he only had a few small bites and everyone else had big slices.

That moment when you debate calling the endocrinologist because you don't know if you are being a worry wart over the matter or if it's important.

That moment when someone asks you how you are and you don't think about yourself but your child. If they had a good day then you had a good day.

That moment when people surprise you by how much they care.

That moment when you find out someone you know has a T1D child and you feel a little bit less alone.

That moment when you call your friend and are crying from lack of sleep and complete stress and she comes over to your house and cleans it while you take a nap before going back to the hospital to be with your child. (Love you, Hayley)

That moment when your own mother says she wishes she could take all of this away from you and your child and you nearly cry because you've said the same thing to your T1D kiddo.

That moment when a friend of your mom shows up unexpectedly to the hospital on the first night after diagnosis with a bag of snacks for you and your husband and a bag of toys, crayons, and coloring books for your son. (Thank you Jodi Burr)

That moment when your child's school goes out of their way to help you anyway they can. (Thank you Apollo Elementary)

That moment when you get a message on Facebook from someone you haven't seen since  your school days and they are so kind, and so supportive that it warms your heart. (Thank you Rachel)

That moment when you realize you need a night out of the house and your friend makes the best plans and gets free tickets. (Thank you Courtney. Halloween 2013 will go down in the history books.)

That moment when you know you are on people's prayer lists. (You know who you are...too many to list and I don't want to leave out any names. Thank you)

That moment when you realize people actually read your blog.
(Whaaaaaaat? Thank you.)

It's A Very Diabetic Halloween, Charlie Brown!

MWAHAHAHAHAHAHAHAAAA! *evil laugh, duh* 

Happy Halloween!

Halloween is my favorite holiday. Less pressure than Thanksgiving and Christmas plus spookiness, gore, campy horror movies, and costumes. 

So what's not to love?

Well, this year it's all the candy. Needless to say, Trick or Treating wont ever be the same again for Ryan. No longer can he pick through his loot and immediately gobble down whatever sugary goodness he has collected from our neighbors. 

When he was diagnosed at the beginning of September, I have to admit that Halloween didn't even cross my mind...And I plan for October 31st early.  Thankfully, I have a couple of lovely Facebook friends that messaged me some really great ideas to make the holiday fun for him and still keep his blood sugar in check. 

One idea was delivering a letter to houses you plan on visiting and letting them know that your child is diabetic. Attached to the letter is a small toy like a match box car, some vampire teeth, or temporary tattoos...that kind of thing. The letter asks the home owner to give the diabetic child the toy instead of candy and describes what  he/she will have on for a costume. 

While this idea is brilliant, it didn't work for our situation since our neighborhood has so many houses and because kids come from all over the city to Trick or Treat around here. It is well known for being a safe location and the streets are flooded with people. I didn't want to add any extra trouble for our neighbors, not that they would have minded, most likely. But also to be quite honest I didn't feel like putting in the time or effort to get toys, print out letters, and deliver them. I'm lazy and socially awkward. Those are my reasons and I'm sticking to them. Nobody's perfect. 

If your neighborhood is smaller and you actually know those that live around you then this would be a perfect idea for you and your diabetic child. 

Another idea that was given to me was the Halloween Fairy. This one struck me right in the part of my soul that loves magic and lying to my kid. HAHAHA-kidding about the last part...mostly ;) 

It's really a very simple idea. Instead of eating all that junk, you let your child pick a few pieces that he really wants to keep and the rest goes into a bucket for the Halloween Fairy. 

At night, after the child has gone to bed, the fairy visits your home and trades the candy for a special gift. It has to be something better than a pile of candy so don't be stingy about it, parents. You don't have to spend a lot but make it something that your child will really enjoy. 

That's it. When your kid wakes up the next morning he has a present from the Halloween Fairy and the candy has either been hidden (very well), given away, or thrown in the trash. 

If you have a child that really, REALLY loves candy just remind him that the more candy he leaves for the fairy, the better his gift will be. 

This is actually a good idea for any kid, not just a diabetic child. Everyone knows the fun part about Halloween is dressing up and Trick or Treating. No kid needs ALL the candy that comes from a large haul on Halloween night. And if you are like most parents you really don't want to deal with the hyperactive aftermath of all that sugar anyway. 

I got Ryan a little nerf gun ('Merica) with extra ammo (Yee-Haw) and my mom got him a DVD of Monsters University. This more than makes up for a bunch of candy. 

Another disturbance in the force this year was Ryan's classroom Halloween "party" which, I've been told, isn't actually a party but more of an extended snack time. I got a note last week from his teacher asking for cookies, cupcakes, goody bags, etc for Halloween day. 

My heart sank a little. I really didn't know what I was going to do. So far I have been able to play bait and switch with a lot of activities at school that involve things he can't eat. But this is the first holiday party (I'm calling it a party, folks...deal with it). 

Ultimately I decided that the best idea would be to check him out of school. I didn't lie about the party to him. I let him know what would be going on and he did get a little upset that he had to miss out. There were tears and that hurt to watch...a lot. 

I asked him if he would rather stay at school and not be able to eat the snacks or if he would like to leave school with me and go do something extra fun.  Eventually, he agreed that getting out of nap time would be far better than staying and watching other kids eat pure sugar. 

So instead of the classroom party I checked him out before lunchtime and we went to Chick-Fil-A. He got to play on the inside playground with some other kids. He pretended he was a zombie and soon all the kids inside the play area were stumbling around with their arms outstretched. It was like an honest to goodness infectious outbreak. I loved watching him play even though some of the other moms kept shooting me looks because now their Precious Wittle Babies were moaning, drooling, walking dead. MWAHAHAHAHAHAHAHA...next step...world domination. 

After that we went to the book store and I let him pick out a couple new books. Ninja Turtles and Doc McStuffins if any of you are curious. He also got a photo with Uncle Si from Duck Dynasty.

I think it was a successful day. He kept asking me what the kids in his class were doing right at that moment and I would say, "Probably taking a nap."

 Then he would do his own evil laugh. 

School Daze

  Since Ryan's diagnosis a little over a month ago, I have become very familiar with his elementary school and a lot of the staff. All the teachers and other admin have been really wonderful during this craziness that has become my day to day life.
  I have been going up there every day to administer his lunch time insulin and blood sugar reading. That will soon change after certified staff is trained to give him his injections without me being there.
  What I have found interesting from my short visits into Ryan's Kindergarten classroom is the sheer curiosity from the other kids about diabetes. They all want to know about the shots and if they hurt or not. They also ask about food Ryan can eat and what he can't eat. They ask why I pack him a different snack than what everyone else eats and wonder about all the water he drinks... not juice.
  Food was the secondary reason I visited Ryan at school today. Every now and then they have a special treat day and today was Italian ice.
  Even though they offer a sugar free version that doesn't give Ryan a green light to eat all he wants. In fact, and I might be off about this, but from what I have googled and researched, the sugar free ice contains more carbs than he is allowed in a whole meal.
  Needless to say, that is a no go. The other hang up was that the treat is served directly following lunch where he would have already consumed some carbs to be eaten immediately after taking his insulin so his sugar doesn't plummet.
  So I found myself smack in the middle of a moment where having a diabetic child can become really heartbreaking due to something that may seem so trivial to others. The bottom line is that he can't have the special treat like the other kids.
  I broke the news to him yesterday and he cried. Not because he couldn't have something he wanted. But because of the reason he couldn't have it.
  In Kidville it really sucks when you can't have a treat because of something you can't help while everyone else around you gets to enjoy it. In Grownupville it sucks too but at least we can rationalize it better.
  So I wiped his tears and I told him that I was going to bring him his own special treat, one that he could have, and one that nobody else could get.
  He loves those little angel food cake fruit cups that the grocery stores sell in the produce section. They are only 11 grams of carbs. I added a couple strawberries, a few blueberries, and some whipped cream. It looked way better than the Italian ice and a group of kids from his class gathered around us to drool at the fruit as they ate their ice.
  Did I have to pack a can of whip cream in a lunchbox with ice packs and bring it up there so the cream would be nice and fluffy when I put it on the cake? Yep.
  Did I have to pre-cut all the strawberries? Yes.
  Did I have to dirty up some tupperware and dig through the cabinets to find the last plastic fork? Uh huh.
  Was it harder to plan all this out than it would be to hand him a dollar for "sugar free" ice and just cross my fingers that his sugar wouldn't sky rocket. You bet.
   Did I adore the grin Ryan got when all the other kids jealously talked about how much they loved strawberries, as they peered over his shoulder to look at his delicious cake?  Big time. So? Sue me.
  The fact that I ate lunch with him and sat with him and his classmates on the ground during special treat time was also pretty cool... from a Kindergartners point of view anyway.
  That will pass soon I'm sure and he won't even want his friends to see me picking him up from school in the afternoons much less hanging out with him at lunch.
  I am totally taking the time to appreciate that right now.

I'll end this post with a list of things I learned today from Ryan's classmates:


1.) Addison's dog threw up yesterday (probably months ago but it's still big news) and her brother was grossed out about it.
2.) Ally likes Tinkerbell and sparkles.
3.) Ryan got in trouble for drawing on the floor (and he wasn't thrilled about being ratted out).
4.) Three kids knew (and were happy to tell me) exactly how many times Ryan has been "clicked down" on the behavior chart since starting school. Twice. (They were accurate.)
5.) Madison loooooved my purse.
6.) My name isn't Ashley with his class. It's "Ryan's Mom"
7.) Ally liked my hair (even though it was styled in "that big fuzzy ball on the back of your head" as Ryan calls it.)
8.) My shirt today is pretty...Ally said so.
9.) I need to hang out with Kindergarteners more often for the ego boost.
10.) They are all totally accepting of Ryan being a little different due to the diabetes. They ask questions and move on, treating him the same as they treat any other kid. There is a lesson in that, folks.


 

High Blood Sugar vs The Tooth Fairy

  Last night was stressful.

At 10:30, Yvette, my Anxiety Monster decided to claw at the insides of my brain. Yes, I have named my anxiety. She is cruel and can pop up for any reason at any time of the day or night.

  Once Yvette prevented me from leaving the house because I got so worked up over holiday traffic on Airline Dr that I decided something terrible would happen if I was to attempt a shopping trip. So instead I laid in bed for an hour and cried about everything that was wrong with my life.

Yvette is a terrible drag.

  Anyway, Yvette started to freak out about Ryan's blood sugar. It had been high at lunch but not so bad before dinner. I even checked his ketones when he got home from school and they were negative.

 Normally, either the husband or I would check him around two in the morning just to be sure that everything was ok while he slept. We do this about three times a week as instructed by the PICU doctors and almost every child diabetes book I've read.

But since Yvette insisted, I checked him at 10:30.

It was 399.

For those that don't know, a normal range for a child Ryan's age is 80-120. He hasn't really been in the normal range often since leaving the hospital and I hope to resolve this issue once we visit the pediatric endocrinologist on Thursday afternoon. That being said, 399 is still very high.

So Yvette fist pumped in victory and I tried not to panic.

I woke him up and gave him water, persuaded him to use the bathroom, and then 20 minutes later checked him again.

386.

I gave him more water, paced around the house, and played a Facebook game for  20 more minutes before another finger prick.

370.

At some point during the water drinking and the blood checking I thought about the fact that Ryan had lost a tooth that morning.

As most parents and former children know, losing a tooth is huge to a kid and their prime source of income. It's a big deal.

Ryan had lost his tooth...literally. We have no idea where the little chiclet ended up. My guess is that he swallowed it either in his sleep or with breakfast. I told him it was no big deal, we would write a note explaining the situation to the Tooth Fairy and surely everything would be fine.

So as Ryan lay in bed with sore fingers and a full belly of water, I wrote a letter and stuck it into his tooth pillow after making sure my words suited him. He is a very lax editor and agreed that what I wrote down was good enough. Probably because he can't really read.

  After realizing that his sugar was steadily dropping and remembering the Tooth Fairy letter, Yvette and I decided it would be ok to go to bed. And by go to bed I mean lay in bed and stare at the ceiling for a while.

  Eventually I did fall asleep just to wake up late the next morning. I rushed around trying to get Ryan's insulin injections done, his breakfast in front of him, his school uniform on straight, teeth and hair brushed, shoes on his feet (can't forget those shoes),  and make myself presentable enough to drop him off at school without all the teachers talking about me after I left.

As I was brushing my teeth it hit me. I had forgotten to put money in the tooth pillow.

  Luckily, Ryan never remembers to check his pillow the night after a lost tooth and since he hadn't mentioned it I knew that it had slipped his mind this time as well.

  I should have been a Navy Seal... or a spy......... or Jason Bourne.

I snuck into my wallet, found a buck, crept into his room and replaced the letter with the dollar bill, tucking the letter in the back pocket of my jeans. As I was in his room I called to him, "Hey, Ry...have you checked your tooth pillow yet?"

He excitedly ran into his room and looked in the pillow, pulling out the money that I had placed inside seconds before and looked up at me with an expression of sheer amazement.

It's going to suck when he finds out that I'm the fairy but hopefully he will one day appreciate the super stealth skills I have genetically passed on to him when he has his own children to deceive with magical winged tooth thieves.

To prevent my mother from calling me and saying WHY DIDN'T YOU CALL ME?! HOW WAS HE THIS MORNING?!...I am happy to report that his sugar was 190 this morning, which is on the low end of the spectrum for Ryan at this point. And mom, I didn't call you at 11:30 at night because despite what Yvette says... I GOT THIS...probably.

Ry was happy, and bright eyed, and had a great appetite at breakfast. He complained about the impending nap time at school (as usual) and decided he would rather let his snack that day be a surprise. He informed me that I should refrain from telling him what it was only to later break and request that I spill the beans. It was chips, sugar free cookies, and water in case you were curious. (1 bag of chips @ 15g carbs + 3 Cookies @15g carbs = 2 carbs)

  I was in such a rush to get him to school on time that I nearly backed over a guy walking on the sidewalk in front of my house. I almost never run people over in my drive way. Other than that, the tooth fairy mishap, and the insulin injections it could have been a normal school morning of any kid, anywhere, in any house.

That is the goal. Keep it normal. Don't let them see you sweat.

I GOT THIS....probably.


Ps. The husband was there during Yvette's and my mutual freak out and assisted as much as I would let him. He has learned after nearly 10 years of marriage that I need to take care of things myself in some cases to ease the stress. I needed to see the numbers for myself, do the checks myself, and give the water myself to reassure my warped anxiety rattled brain that I have done everything I can do short of wizardry to help the situation. I'm weird. I accept it.

My little snaggle tooth boy.

Wilford Brimley Is Still Funny

I love to laugh. Usually, it's about something totally inappropriate. That's just my weird, twisted humor. My husband is similar in that he also loves a good dirty joke or a non PC observation.

The other night while we were talking about all this diabetes mess he said, "Do you think this happened because we laughed at Wilford Brimley?"

I honestly didn't know what to say. But I did laugh. I couldn't help it.

 Eventually I told him that No, I did not think Mr. Brimley had anything to do with this. I'm still not sure if he was being serious or not. I guess in times of tragedy you try and find ANY explanation even if it means pinning our son's diabetes on the Quaker Oats man.

My reason for writing this post is to assure people that I have not lost my sense of humor during the past few weeks. In fact, at times I've had to cling to it in order not to go completely bonkers.

So don't get all PC on me and feel like you can't say certain things or laugh at internet memes.

I know that nobody is actually laughing at the disease or the issues it causes. I know that nobody is laughing about my son being diagnosed or any child diagnosed for that matter. I can separate all of that in my mind easily...probably because I laugh at myself and my problems on a regular basis.

Wilford Brimley is still funny. I promise.

I'll Clean My Room When My Diabetes Is Gone.

  I took Ryan back to school today.

  It was really hard to drive out of that parking lot...much harder than it was the first day but I didn't cry...as much.

  We are very lucky to have so many kind, helpful, and knowledgable people at Ryan's school to help us through this nerve wrecking time. I felt as comfortable as I could possibly feel leaving him there in their capable and understanding hands.

That doesn't mean that I'm not scared because I am...I think I always will be when he isn't right by my side where I can watch over him myself.
 
  I packed him his own snack today. Usually, every kid gets a snack day and their parents buy for the whole class. Since there is no way to know what food will be brought into the classroom I will have to send him with his own separate snack each day to make sure she gets the right about of carbs. I hope once we see the pediatric endocrinologist that this will change but really...I don't know.

For the rest of this week he will only stay at school until just before lunch. Then I will pick him up and bring him back home, check his blood sugar, give him his injection, and feed him. Next week he will stay full time and I will go up to the school to take care of his needs before he eats.

Thankfully, Ryan's OT is extremely caring and wants to help us out anyway that she can. Her own son (who is now a grown man) has type 1 so she is fully aware of what we are going through. Ryan will be able to eat lunch in her classroom for now, until I feel comfortable enough to let him eat lunch with the whole class in the cafeteria. I am worried that he will get distracted and not eat all the things he needs to after his insulin shot.

In lighter, more humorous news, Ryan has discovered that he can use diabetes as an excuse for just about anything. Not that it works on us but he still tries. I asked him to throw away his trash and he told me that, "He couldn't do that because he has diabetes."

He also informed his father and I that he would clean his room when his diabetes was gone. This made me laugh and broke my heart at the same time. He understands that he will have this for a long, long time but to a 6 year old a long time could mean a week.

I do have faith that there will be a cure one day but I don't like to mention that to Ryan just yet. He needs to understand that this, for the mean time, is forever.

His attempts at diabetes manipulation tactics does make me smile though because it's what a child would do...and he is still just a kid. He hasn't lost that and I am thankful because a diagnosis like this has the potential to steal away a part of that innocence and child-like personality.

I want desperately to keep that little boy wonder and excitement for life intact. I refuse to let diabetes darken his childhood.

When it is time for his sugar checks, Ryan repeats a mantra that he came up with on his own over and over and I couldn't agree with it more.

Ryan is a brave boy. Ryan is a brave boy. Ryan is the bravest boy in the world.