The Life

It used it to be "The New Normal". Thats what we all somehow call it. Like its whispered in our ears in the dark light of a hospital room, while we lie awake in terror. Our heads are opened up and doctors, nurses, endos, CDEs pour in all the new information as if our brains are sponges that can somehow soak up all that knowledge while really, they are reeling, screaming, "Why?"And "how?"And "please no!". Then, we are sent home and expected to be able to do it on our own. We stay up all night, squeezing blood from our babies fingertips, praying for the right numbers, and googling all the latest advances in research and technology and CURES because.......somewhere in Google, the ability to make it all go away exists. Somewhere, out there is the key to making us normal again.

Stop. Stop googling, stop crying, stop fearing. Yes, it's normal. It's part of the grief cycle. You grieve your "ordinary" life, your "perfect" child.  Eventually, you will burn out, and I think that is when you start  to actually live again. You tell diabetes to go screw itself, only deal with it when you have to and put it out of your head for the other 97% of the day. And..........YOU NEED TO DO THAT.  Your child needs you to do that. To stop hovering and asking and helicoptering!

Yes, stop helicoptering.

Your child is still normal, still perfect. What smothers a kid more than a pain in the butt disease? A paranoid, over bearing mom. And yes, I am Soooo guilty of that. But I see it now, and I step back and ask myself, does it HAVE to to be this way? Or is there a better way? A life out there to be that crazy thing we call normal, and not worry. It's there. It comes with acceptance. And knowledge. You will learn that it's really not the end of the world.

 I promise, it's not.

 You get your bearings, and then your footing. And one day you just realize, that hey, it's okay. And you find balance. The balance is.... interesting. You find yourself having conversations where you stress that yes, it's important, it really is, BUT....it's not. Wait, what? Yeah, it's important, but it's not, because it's okay most of the time, and WE CHOOSE NOT TO LET IT DEFINE US.And really if I could find a better way to try and make my point it is this:

Yes, diabetes is a big deal, it's important that people understand, there are dangers and the specific needs, BUT the other 99% of the time, it doesn't matter, so don't let it be an issue. It's all about balance. So, stop worrying about low blood sugars and let your kid be a kid and go jump, head first out of the neighbors tree onto a trampoline and break their wrist, because isn't that the kind of stupid thing kids do? Balance people,  let them BE KIDS. That's the key to being normal, let the kids lead the way. It will all be alright.



I promise.

Just a ticked off rant

This is me pounding my head against a brick wall. I need to go to medical school to understand this. Why is it unsafe to give a live virus flu shot to a T1, but you CAN give them a live virus MMR shot  full of egg that the kid is allergic to?  Is it because I'm sacrificing my child for the "greater good" ? This child is the definition of why we need herd immunity but by damn, I'm not about to torture her and over load her already beat up little body. I hated them the first time around, I knew it, every time they wanted to pump her full of chemicals  and 'dead viruses'... I never was okay with it. You can argue with me all you want, you can spew all the "data" and tell me I'm crazy, but my mom gut will always tell me that the ton of vaccines they threw at her a year before her diagnoses is what kick started the immune response, hell, maybe it was earlier, but there is evidence that kids with  a genetic predisposition to T1 do have an increased risk of developing on top of the risks associated with the vaccines, and once again argue all you want, go read the fine print.

This isnt supposed to be a rant on Vaxing, but just the idiocy of this idiot states laws. I have documentation that my child has a level three reaction to egg....  thats pretty freaking bad. Poor things face swelled up, eyes swelled shut, rash all over her face thankfully we caught it before her airway and mouth swelled up.... we carry an epi pen and they will also give steroids to stop the reaction... guess what steroids do to a diabetic?  Blood Sugar, thru the roof. Fun times. because on top of being an itchy, swollen mess you can also be so thirsty you will drink just about anything, and have to pee every 5 minutes and eat everything in sight, which only makes you feel worse. Fun times for a FIVE YEAR OLD.

This kid is one of the thousands if not millions of reasons that we need herd immunity. Look, I hate these things, I hate that they arent safe( if you think so you are crazy) and I hate that we need them, ( and I am so incredibly grateful for the parents who do vaccinate without question) But its not  a deadly case of measles and its not polio and seriously I would give her the damn shot myself if I were faced with an outbreak.  But we aren't, at least not today, so instead I get to keep arguing with these people who are looking at a piece of paper and not my kid... the one with the perma dark circles under her eyes and the callused, pin hole ridden finger tips that really has had a crappy year and just needs a break, not more shit to deal with.

And now that Mount Everest is sitting here on my chest and the brick wall isnt quite so hidden I'm going to shut up and go pretend everything is ok and we are handling shit. Cause thats what we do.... but can SOMEONE PLEASE TELL ME WHY  A LIVE MMR VACCINE IS OK  WHEN THE FLU ISNT?!?!?!?!?!

1 year

1 year ago today, I got up early, shuffled a 4 yr old to ballet classes at 8am and then brought my niece Teagan home to hang out for the day.  She was CONSTANTLY  asking me for something to drink.C Calls and texts to her mom, is this normal for her?  When did this start? Is she doing X? Y? Z?  I was already thinking diabetes because my husband is Type 1. I couldnt check her blood sugar but I sent her home with ketone strips I had and gave her mom instructions on how to check.

Then I curled up on the couch and took a nap while my own undiagnosed child ate and drank me out of house and home, blood sugars raging.  1 year ago today, Bella was already diabetic, her pancreas was already at least 80% dead. She wasnt diagnosed for 4 more months.

I have asked myself so many times... why didnt I use a ketone strip on her?  I had already pushed the notion that she was diabetic out of my head.  I had asked her dad to check her BG and we rationalized it. Shes just thirsty, of course she's peeing all the time. This went on for months. Maybe it wasnt that excessive we told ourselves. She had always been in daycare, now she was home with me. Maybe it just SEEMED like more. It continued  through thanksgiving and Christmas. Through new years and her birthday.

Then in February she started to get thinner, but taller, so was she really skinnier or was it just her slimming down from growing. Her 5th birthday came and went, I FINALLY had a baby. And then things really kicked into high gear, she started wetting the bed, she was having horrible behavior issues( I had to carry her kicking and screaming out of chic fil a one day, 39 weeks pregnant), She was drinking 3 or 4 glasses of water at bedtime.

The night she was diagnosed was very long. I had been through some complications after Trace was born and was in and out of the emergency room.  That afternoon I was having issues and my mother in law came over to watch Bella so Nathan could take me and Trace back to the hospital.  I sat int he ER in unbearable pain, panicking because there was something WRONG with me and I was scared I would never be normal again. Trace was screaming because he was hungry and I was in so much pain that I couldnt move into a position I could nurse him in. I begged a nurse that passed my room to just help me so I could feed my 10 day old baby. I begged God to please just make it stop. I was crying, begging and pleading with anyone, then I just felt a calm feeling. It wasn't like I was suddenly ok, but liek I needed to calm down for clarity.  Then I remembered somethign from early in my pregnancy and knew what was wrong with me and how to fix it. Within moments I was a new woman, I walked out of the room with utter amazement, and fed my baby. The nurse came back and was shocked at the change, doctors came in and laughed incredulously at the silly way I had fixed my problem. We packed up and left the ER to go home. When we got there it was after 10, Bella was not asleep and was  asking for a third cup of water in less than an hour. My mother in law and I had both been concerned for a while and finally we checked her BG. Hi. HI. HI.... vomiting.... 487...water. water... water.... 350..... sleep, no food.... 250.... back to 375. Because we were experienced in T1, we did not go straight to the hospital. Now I know how utterly stupid that was. Even though her BG was dropping her ketones were not. I strongly feel that she was actually getting very ill that night. If I hadnt been in the ER would Jane have been there? Would we have finally checked her BG?  NAthan and I surely would have kept rationalizing it. We had been for months.

Weeks later, sometime int he middle of the night, I laid awake trying to figure out when she started showing symptoms. I remembered Teagan. When that happened I had already been thinking about what was up with Bella. I even told Tracy about my concerns and how ( we thought) they were nothing. I had a picture of the girls playing in the backyard that day....its still in my phone. Oct. 29th.

So 1 year ago, Bella had type 1 diabetes. Its not the D- anniversary. Its worse. It's when it should have been caught but wasnt. If your child ever has symptoms of diabetes, HAVE THEM CHECKED. It can save their life!

Common symptoms of diabetes:

• Urinating often
• Feeling very thirsty
• Feeling very hungry - even though you are eating
• Extreme fatigue
• Blurry vision
• Cuts/bruises that are slow to heal
• Weight loss - even though you are eating more (type 1)

Thankful!

My 5 year old daughter Bella loves horses, she loves to draw, especially fairies and she just learned to ride her bright pink and purple bicycle without training wheels. She has long blonde curly hair that catches everyone's attention and she has enough "sass" to make even a stranger shake their head and hide a smile. My daughter Bella was diagnosed with Type 1 diabetes in February. This means that her body cannot make the insulin that it needs to turn her food into energy for her body. Her father and I must give her insulin injections, shots, multiple times a day. In the 6 months since Bella was diagnosed she has had over 550 injections. Thankfully, she now has an insulin pump that administers her insulin, instead of shots she only has to change her infusion site every three days. It has been a godsend! However, we must still check her blood sugar 8-12 times per day. This means pricking her tiny little finger tips with a needle and squeezing blood out to apply to a test strip. These readings let us know if her blood sugar is high or low, how much insulin to give her, or if she needs juice or food or worse, an emergency injection called Glucagon to raise her blood sugar. Just like the pump made administering her insulin easier on her, and so much more effective as well- There is a device called a Continuous Glucose Monitor. This "CGM" has a fiber-optic sensor that sticks under her skin and stays in place for a week. The sensor takes a reading of her blood sugar every few second sand every 5 minutes it displays the average. Not only does the CGM give us the real time reading but it plots these readings out so that we can see if her sugar is rising or falling quickly, allowing us to catch any dangerous lows and stop dangerously high blood sugars. However, her insurance will not cover it. It's not a required item, even though it is considered the standard of care in the diabetes community. A CGM costs almost $1600 and the monthly supplies average about $300. This is beyond what our family can afford. Thankfully, we have wonderful friends. We have friends who are going above and beyond, creating fundraisers to help raise the money to purchase Bella what she needs, what we need to keep her tiny little body as healthy as we can.

 I dont know how to make it click-able... but here it is!

https://www.giveforward.com/fundraiser/f303/bellacgmfund

underneath....

When you look at people you see what they want you to see.  You see a somewhat put together human being with not enough sleep and not enough hours in the day and not enough help, but making it, getting by, because its what we do. When you look in the mirror. you see what you want to see. You tell yourself... no, no, you don't. Because its not even there. You don't have to tell yourself ts ok, because its just... there. That gut instinct. YOU ARE OK.  There is no "telling yourself" because that would be some sort of inward acknowledgement that things aren't really okay. And they have to be. Not in that, I refuse to accept the possibility of failure kind of way, but in a way that means if  they aren't JUST okay, then the world would crash to a halt. That speechless, Oh My God, what has happened here, what do I DO? Paralyzing fear... that ok, right this minute that number is ok... but what about the next one and the next one and the NEXT one, when shes asleep and your exhausted and sleep thru an alarm and Oh my GOD, what if you sleep through the whole night and wake up and she's dead.  Thats not there. It cant be, stuff it down inside. DEEP down inside, behind the brick wall in the back of that closet that you hide everything in. Because you ARE OK. Your CHILD is FINE. There is nothing to see here... nobody is broken. that stupid pancreas, we have GOT THIS. We don't need you... until it starts to happen to someone else. And somehow THAT person punched an teeny tiny little hole in the brick wall in the back of the closet full of hidden shit. And all the signs are there and all the symptoms are there and you start bawling because dammit, WHY does someone else have to go through this. And you can cry, you can cry for this other person because she isn't YOU and he isnt your child and you dont have to be FINE for them, because they live 900 miles away. You dont have to hold it together for them.  Your heart can break for them, because you dont have to look them in the face at 3am and make sure they are breathing.  Thats their Grand Canyon. You are only seeing it in pictures.... its not so huge, so massive, so terrifyingly deep in pictures. But you dont have a Grand Canyon... you are FINE. Not your kid, she is FINE.  We are OK. Nevermind that nagging feeling in your gut, the choked back sob that is always there, because you are imagining that. When you read about that new kid who was just diagnosed. It didnt bring a thing back.... that little bump, it was a speedbump, not Mount Everest calling. Nothing hidden in that closet behind that brick wall.  Move along. Stop fumbling with the lock on that door, you are too tired, too exhausted after 6 months of not sleeping, not breathing not looking in the mirror, because Mt Everest might just be too big to stuff behind the brick wall. And God knows you are too damn tired to shove everything back in if you open the door. Nothing is wrong, YOU ARE OK.... wait, did you just say that?

Wait what happened!?!?!?!

Summer is over? School starts in 5 days! eek! We have been doing diabetes education at Bellas school ( yay for starting Kindergarten!) and learning how to use her insulin pump. Trace is almost crawling and weighs about 125lbs now. Ok ok, more like 20, but you get the point.

Hopefully the school year will go well. Her teacher seems more than capable and willing to work with us on proper diabetes care. The principal seems wonderful. Everyone is eager to learn and be helpful, more so than I think is necessary in some cases. The librarian was concerned about how to work her pump! THAT shouldnt be needed. But I admire her concern.

B is doing great acclimating to it. She wore it for 3 days this week, all while still having to get her shots because the pump only had saline in it. I tried to change the site yesterday and screwed up so we decided to leave it off until she starts on the insulin.

So pump is lined up, school supplies have been bought, school clothes are waiting to be washed and hung up. She showered and washed her won hair for the first time tonight ( although there was s good bit of yelling involved on both of our parts. She is finishing up swimming lessons, ( God, bless that woman for not drowning her, She has fought every step of the way).

Looking forward to getting settled in and having a routine again. These past 6 months have been fly by the seat of your pants and then crash ( to sleep). I'm hoping school will work out well, and I can get Trace on a bit of a routine. We started much earlier with Bella but things have just been chaotic around here. Maybe the poor boy can get a decent nap!

I'm hoping that within a couple of weeks I can get geared up and start working on my little business idea. I started making T shirts with pockets to hold Bellas pump, and a few friends suggested I sell them. They are over $30 online but I can make them at a fraction of the cost. I have already started trying to get the word out on FB and fine tuning some ideas. So please, if you havent already checked it out, go here, and see what all my yammering is about!

                               https://www.facebook.com/sugarfreetees

Tired

This sums it up perfectly.

http://www.theprincessandthepump.com/2013/04/at-least-its-not.html