because i NEED more beating hearts in my house like a hole in the head.

imma type in blue. blue is the color for diabetes. i think it should be red, because we deal with a lot of blood-but i think that color is taken. 
but i like blue because isn't blood blue before it comes out of a hole in your body and meets air? whatever, probably not, but i'm pretty sure my mom told me that when i was little. 
so i will just pretend. it makes me like blue even more as the color to represent the beetes.
(i should have stayed in nursing school, i would not sound so ridiculous sometimes)

we're almost there. in less than 24 hours we've raised $590. mind blowing. absolutely mind blowing that the love and kindness IS out there-and when and where you least expect it. 
raising money is hard. i've been giving it a go for just over 5 years now and it gets harder and harder every year. SO many things to donate too. everyone has ONE thing they are passionate about. i was passionate about all sorts of things. until we were smacked in the face with diabetes. smack in the face. my son. my baby boy at just 13 months old. my boy that JUST weaned himself from nursing. slips into DKA and is KNOCKING on deaths door. HELLO.
my passion just took a new direction. 

i have folks in my life who are passionate about ben. as a mom, i can tell you that there is NO feeling so ssuperior to know that SOMEONE out there is hoping and giving so that MY son can live a better life. SO MY SON CAN LIVE.

we ain't got no cure. we have insulin...but it sure as hell isn't a CURE. syringes, pumps, continuous glucose monitors. frankenberry cereal. meters that sync with an iphone. glucose tabs. juice boxes. what's healthy for your kid can kill my kid if it's not covered with insulin. what do you mean you didn't drink your milk? meters that talk and take blood from your forearm.  i pumped you up for that milk! lancets, pokers, strips, sorry kid, that cereal with the fun toy and sweet colorful logo will wreck havoc on you in an hour, so rice chexs it is. tubing, insertion sites, hallo-fucking-ween. sensors, transmitters, priming. rewinding. bolus. basal. I:C. care link usb charting, how many carbs in that? how many carbs in that? too high. too low. every hour. all day. every day.
 
 
diabetes, scha-metes. i can count a bunch of other crazy diseases that are deadly and scary and MAYBE more serious. but you know what? THOSE things aren't the thing taking its toll on my 6 year old BABE. these invisible diseases are real buggers. 
i'm glad you guys are GETTING it. 

oliver is naked. on the counter. again. this is totally irrelevant to my bloggin' but if i am to get ANYTHING done, i have to ignore him for a few times a day-which means that he is on top of something, eating something, biting someone or in the bath tub. 

i wish i could web cam my daily life. i would have to think of a good name so that it when you googled my site you wouldn't' be directed to some funky porn site. 

we're working towards a diabetic alert dog. 

♪♫♪ it's gonna take money...a whole lotta spendin' money. it's gonna take time. a whole lotta precious time. it's gonna take patience and time. to do it. to do it. to do it. to do it right.♪♫

DARE someone put a price on the life of a child. in my eyes, no price is too high. not for MY kid, and i assure you, it wouldn't be for YOUR baby either. 

this dog will be trained FOR ben. he will bark. he will paw. he will GET it, too. 
this dog will be MY sidekick, MY hero, MY peace of mind. 
this dog will be MY SONS LIFE SUPPORT.

until there is a cure, there is a dog.

god bless them sweeties at Warren Retrievers. 

www.warrenretrievers.com 

   
to help us reach our $1000 goal, visit www.paypal.com and use the email 
elaineslongarm@gmail.com
if you 'gift' it, paypal won't charge you a fee. 

if we reach our $1000 goal, we'll be able to start the official fundraising process to cover the costs of this 4 legged miracle. all donations will be directed to our very own account through warren retrievers/guardian angel service dogs. every penny will go towards bens D.A.D. 

it's worth it. just LOOK at this kid. he's gonna do BIG things, guys. 
   


      

bad day for mom

i could blog about oliver losing part of his thumb.
i could blog about oliver feeding goldfish to pearl, washing it down with raspberry ice crystal light and then finishing her 'meal' with a big squirt of aquafresh kids.
i could blog about ben and his obsession with saying swear words or his fascination with ninjas and zombies. i could blog about pearl and how sweet her chunky thighs are and about her perfect eyelashes.
really, there are so many things...TOOOOoooo many things to blog about in my life. i think that is why i space out on it. i make mental notes, i totally need to blog about that...kel, write that shit down, girl!
and then it happens...something else...and i keep adding to my horrible memory, things to blog about. so when i do blog (because i am so seasoned at it) it is usually about something that cracks me up over and over again- or something that sits with me and weighs heavy on my heart.

i yelled at ben. i mean YELLED. 

this past weekend we drove to pittsburgh for our diabetes walk. we go every year..we have too, it's for a cure. we'll keep walking until there is a cure...
we had such a great time with the small group of folks that joined us. i am still bitter about the ones who didn't join us, but that is another story. like my mom said, this is something that is important to ME, not them. i wish it wasn't so.
but regardless, we did have a GREAT time. we walked, we laughed, we ate amazing food at this new restaurant...and found an amazing little bakery with amazing little cuppie cakes.
after the walk, ben spent saturday night with his dad. the babies and i headed to washington, pa. we decided to spend an extra night and visit with ryan. he works so much, and gets to come home..never, so being able to squeak in an extra visit, is awesome. i'll skip out on all the nuttiness of hotel life, and get back to my point.

we had lunch on sunday at a ginormous chinese buffet (it was SO clean. it was weird) and of course ben didn't want to eat a darn thing. which, was fine-he'd had lunch with his dad, meme and grandma just about an hour or so earlier. then we walk in and he sees the endless rows of food. 
chinese food is a cruel joke to a diabetic. there is NO way that you could ever accuartly JUDGE the carb count in a damn thing. luckily, i pride myself on being the walking 'calorie king' and can take an educated guess and be fairly right on. be jealous. 
except when it comes to chinese. i can't seem to master the 3 bites of chicken on a stick, 1 and 3/4 bites of an egg roll, 7 lo mein noodles, just the cream cheese chunk of a cream cheese wonton and 3 fried dumplings swimming in dipping sauce...or the chocolate fondue fountain...or ice cream cone that all the 'cool' chinese restaurants have. 
i guessed. horribly. but i didn't 'believe' it was horrible until we started on our drive home. 
bee bo beep. bee bo beep. 
i knew it was a matter of time before we would be getting the 'predicted low' alert...ben had been whiny about being hungry and that he couldn't believe that i wasn't going to buy him an ipod touch for his birthday and that his dad would let him do this and do that....and by now pearl had screamed enough to make the hair stand up on my arms and i just KNEW ben was going to be low.

476. whoa. what? wowza. WTF. that is NOT low. that is HIGH. holy bejesus high, actually. 
and this is where it happened. i yelled. i screamed and i was PISSED. 

i screamed at ben for eating an ice cream cone. i yelled at him for not picking more broccoli. i yelled at him because he needs to be aware of what he is eating because those choices are a matter of losing a finger or a foot. organ failure. death. i yelled at him...DO YOU WANT TO DIE BEN?! i yelled at him because he should know better by now and that diabetes is part of his life, like it or not and he HAS to get on the train to take care of himself or ELSE. i yelled at him and yelled and then i looked back. i looked into the back seat to see the tears of a scared little boy who kept saying 'i'm so sorry mom, i am sorry, please don't be mad at me'.

ben shouldn't know better. ben is my little boy. i should know better. ME. not my gorgeous, strong, courageous son. ME.
i yelled at him, through tears, because i FAILED. i made the bad carb counting mistake. not ben. i used ben as an outlet to MY frustration and i cried. ben is FIVE. ben is MY life and MY responsibility. 
ben is a kid. ben is a kid. BEN IS 5. he didn't do ONE thing differently than any other child at a chinese restaurant. (except he ate a crawfish...what kid eats a crawfish at a chinese buffet?!). 

i know i am a good mom. i am a GREAT mom, actually. i love my kids more than air. diabetes is just a hiccup that we have to man handle and put in its place. i am so much braver than that stupid D, but i'll tell ya. sometimes, it's hard. ben just happened to be part of one of my hard moments and man am I SORRY.

i spent the rest of the drive apologizing. telling ben how much i love him and that sometimes mommy goes a little spastic and even though i say horrible things-they aren't true. i assured him that he won't lose fingers or toes and i promised him that he isn't going to die. 
i spent the rest of the trip telling ben all lies. 

the only truth i told him was how much i loved him. 
and god, that hurts. 

i've been replaying that scene in my head since sunday afternoon. i can't shake it. i am an amazing D mom and regular mom. ben is an amazing kid with diabetes. we are a good pair in a life that just isn't fair. i PRAY that he will keep with him the education and knowledge of diabetes, so that when it IS his time to take control, he knows what to do. that he KNOWS to make the right choices so that those 'lies' don't come true. 

as long as there is D, there is still time to donate and help make a difference.

www.jdrf.com

shew. we.

a check.
ryan says... kel, i can't forget to get a couple of checks from the bank today. this was yesterday, of course.
normal day yesterday. at least that was what it was SUPPOSED to be.

i want to send ben off to school and never have to think twice about it. we got up, ben had a half of a bagel and a glass of milk for breakfast. let's not start off on the wrong foot...i mean, i DO make breakfast occasionally-just not yesterday or the day before...or well, i do make it about 2 'school' days a week. weekends don't count. we let meemeez cafe take care of us. but yesterday, a bagel and a glass of milk. blood sugar, 120. HOLLA!

we go outside to wait for the bus which really consists of me holding the baby on my hip while swaying a blistering hot cup of coffee, because the toothpicks are broken and my eyes will NOT hold themselves open....oliver in a t-shirt, MAYBE a diaper, ben beautifully dressed for school. THEN the 2 of them chasing each other in circles around the house while i yell
"ben! don't go too close to the road! ben, GET DON'T LIE DOWN IN THE GRASS, IT'S ALL WET!, ben! don't spinnnnnn me arrrrrroundddddd i have HOOOOOOOT coffee and the BAAAYBEEEEEEEEE. NO! i am NOT base! ollie, get away from the road--do you know what that huge truck would do to you!?! stop rolling in the dirt! ben, don't kneel...UGH, now you have dirt on your knees...
BEN! where are you? there is the BUS!"

THAT part of the morning is done. 7:36am. awesome. what next??

nothing but relax for awhile, get dressed and head to town for checks. maybe errands....of course,in relax i am not counting ollie eating breakfast-because he doesn't eat it anyways, he throws it and smears it, POSSIBLY licks it and nursing pearl AND reheating my coffee since most of it slopped out and i never did get to sit on the porch and enjoy it while we peacefully waited for the bus.

i wait for my 8:30ish phone call from ashley, bens school nurse. to tell me he made it safe and sound and his blood sugar is (?)
she isn't wendy-but she is great.
like clock-work, the call comes. except ashley is in MORE of a panic than normal. ben doesn't have any strips!
i. forgot. the. test. strips. on. the. kitchen. table.
oops.
luckily we keep a spare meter and strips at school, but THAT meter doesn't sync with our insulin pump, so i tell her to test with the spare and i will run the bottle of strips into town. F.M.L.
another call...ben is 400something. christ. so much for my shower...and not that it matters because leaving my house with kids and ryan doesn't happen fast. it is slow going. but we make it to town.
ben is still in the high 400's so i do a quick pump site change and see that there is blood in the cannula. (and i am NOW realizing that i need to take pictures of my daily life, all day long, JUST to show you the things i am talking about). we change the site, go over what's for lunch, count carbs and send ben off to gym. pushing fluids...no ketones, good. i will hear from her after lunch/recess at 1:30.

now, let me back up to the night BEFORE when i spend an unGAWDLY amount of time trying to find bens USB pluggy thing that syncs his pump/meter to the software program on the computer. it is awesome. we can graph, chart, yadadadadadada....email results. but alas, it is nowhere to be found. i dug in boxes, looked under and over everything in this house.
thank god ryan came home and settled me down because i was-i DID-give myself an ulcer freaking out over the misplaced USB plug. ryan assured me that it was in this house so it DID make the move, and that he saw it in an obvious place. also reminding me that we were going to put 'this somewhere safe'...
he found it in the diabetes cabinet. obviously. 
i sync. i have to send our diabetes supply comapny 28 days worth of "time stamped" blood glucose readings in order to SHOW that we test more than 7 times a day, which is what they are supplying test strips for. 7. zoinks...we test um, 15. no WONDER i have run out of strips 2 times in the last month.
i am now up late. my eyes are BLEEDING. i email.


back to present day...
jeff, he is my buddy from CCS MED. the supply co. calls me  on the way out the door...you know, to the school to TAKE ben the test strips that i forgot to put BACK into his kit....and he says-i can't open the link. can you fax it????
for real, i say. COME ON. i grab the laptop. out the door we go.

after we do the morning site change fiasco with ben, we head to meemeez. our favorite breakfast spot...faxing will have to wait a few more minutes because mama is starving. (actually it was ryan, but i try not to state the obvious ♥). i neeeeed coffee. mainly because my cup, from the morning, was still in the microwave.

pearl screamed 89 % of the time at breakfast, oliver rubbed his scrambled eggs and sausage all over the table and wall and ryan ate my LAST bite of biscuit and gravy. i DID get a cup of coffee though, which worked in good timing because while ry left to put pearl in the car...oliver NEEDED to dump an entire box of toothpicks. all. over. the. counter. the floor. the...F me.

and now i fax. over and over because i can't seem to READ and have been faxing to the wrong number. i did that for an hour. the kids ran and caused havoc in the back office of the hotel, ryan brought me a blizzard from DQ and i eventually fax the log sheets to the RIGHT number. and we can go home.

i am showering. finally, i can shower. until i hear my phone ring and yell for ryan to grab it because it suddenly CLICKS that it's 1:30 and it will be ashley calling to give me an update on ben....
bens blood sugar is reading 497. holy fuuuuuuuuuuuu...dge. i told her we'd be there within the hour to pick him up. today is NOT his day.
i will leave out the details of me TRYING REALLY hard to get out of the house again-while ryan checks his email and relaxes on the couch....(which later he did apologize for)....so an HOUR later, we leave the house.
i get another panicked call because now the meter will only read "HI" and not give an actual number. and now ban has ketones. his belly hurts and his insides feel 'tingly'. my heart sinks.

**Ketones are acids that build up in the blood and appear in the urine when your body doesn't have enough insulin. They are a warning sign that your diabetes is out of control or that you are getting sick. High levels of ketones can poison the body. When levels get too high, you can develop diabetic ketoacidosis, or DKA.**
-the ada website.

pull the site. a bent cannula. bloody hell, i hate this! of course you never know until it is too late, that a cannula is bent and ben isn't getting any insulin at all. so that 70 carb lunch he ate was just hanging out in his body-causing irreversible and some really shitty damage. damn you diabetes! i just want ben to be able to eat a darn hamburger!
i gave ben an injection. with a real needle...and had him drink a shit load of water. i knew the problem, luckily, today we had QUICK fixes. quick, as in eventually bens blood sugar DID drop down and by the time he sat down for dinner with his dad it was 115. HOLLA. and NO ketones ♥.

so we took ben to clarksburg, met his daddy and ryan and i took the babies and had dinner. that was a nightmare because oliver in public is no worse than releasing a lion in a meat market.

but we finally made it home, it was 8:30 and i couldn't have been happier to lay down in my bed. what a day.

good night ry, i love you...good night kel...i love...WE FORGOT TO PICK UP THE FREAKING CHECKS.

one day. things will go as planned.

Today.

yesterday, my sister margot, posted on my facebook page that i should start a blog. WHAT THE HELL IS SHE TALKING ABOUT? like i have time. for real. i have negative hours in my day.

last week, my mom said that i needed to think about writing a book. like maybe a childrens book about my daily life-diabetes. kids.ben. diabetes. what happens while..IF i get a shower. oliver. diabetes. kids. school. diabetes. pearl. meals. diiiiiabeeeeeeteees. 

take a stab at what my life revolves around...even though i am pretty smooth and can take it with a grain of salt. it's taken 5 years. but i can. most days anyway. i am mom. i didn't sign up for the diabetes part, but whatever-i'm up for a challange.

so yesterday. margot said-write a blog! she's so darn cheery.

ironic. soon after that, a question was posted on the facebook wall of a group i belong too. it's a diabetes group, and it is for parents of type 1 kids. the q was 'how do you do it?' you know, day in and day out of living and breathing diabetes. what gives YOU the gump-shin (there ain't no auto correcting THAT). 

my first thought was...what choice do i have? i have no other choice than to keep watch over my son. i do it out of love. i do it because he has the greatest smile. the best hair, his hugs are AMAZIN', i do it because i am his MOM, it's my job. god picked ME to handle this. now, i am in NO way a religious guru, but i do believe in heaven and in jesus and his saints...and all his prophets, yeah, yeah. yeayeayeayea. 

so, yeah-sometimes i'll be all god like. and some days, not so much. i'm going to heaven, it's cool.

BUT-back to the topic at hand. HOW DO YOU DO IT?

do you know, that some of the parents were PISSED about the question? i couldn't believe it. moms-mostly, were posting responses like 'stupid question' and this one: 'I would like to know who came up with this question. Isn't the group "Parenting Diabetic Kids" Does the person who created this site not have a child with Diabetes? Seriously?? I won't even validate this question with an answer. Freaking insulting and ridiculous" 

i copy and pasted those, by the way. or btw. lol. bazinga. 

well, that made ME mad. i was appalled that another mom, that is going through the same trials and tribulations that i go through had the nerve to be so....rude. this was my response:

"Why are some of you upset with question?? I know that almost daily, I am asked by a non-d parent, HOW I do this day in and day out.
I always answer the same way , I just DO it. In my eyes there is no other way.
Period.
However, if YOU don't and when you didn't live day to day with this disease, you most likely thought the same thing.
I did. And it is obvious NOW what the answer to the question is, but before D...I looked at parents and felt sorry, didn't envy them and was sooo grateful for sleep filled nights. I would think, whoa-so glad it isn't me, mama needs her beauty sleep!
And then I got the eye opener on Thanksgiving Day 2007. Ben was 13 months old. This October, he will be 6.
What if some of the parents are NEWLY diagnosed D parents?? They may be reading these responses and gaining comfort in the fact that they are not alone and see that life DOES go on!
Don't be so ridiculous in mocking who asked or posted the question."

i got 21 'likes' :)

and that got me thinking...i SHOULD write a blog. 

then, today. something else happened...and i use the term 'today', loosely. it was around 12:30 am when i was awoken, again, by the alarm on bens CGM (continous glucose monitor) it's a nifty little machine that ben wears. it tests his interstitial tissue...keeping a continous watch over his blood sugar levels. it isn't totally accurate, but it's like having...well, an alarm. ben's getting high! ben's dropping low! bee-boo-beep!  bee-boo-beep!

(we can go hours and hours through the day and stay in range and not hear a peep out of the damn thing, but as soon as the sun sets and we settle in bed...it. doesn't. stop).

bens blood sugar was running a bit high yesterday afternoon and evening...and then wham! low. 48 with IOB (inuslin on board). in fact, 1.5 units of insulin. and to be blunt-that would have killed him. WOULD not a maybe. WOULD. but we have that awesome CGM to bee-boo-beep and let me know that he is dropping at an UNGODLY rate. we were able to pull him up with 2 cookies and a glass of milk. 

until a few hours later his blood sugar decides to shoot through the roof and STAY PUT. a few bolus' (a 'shot' of fast acting insulin) and an increased basal (a steady stream of insulin given continuously throughout the day and night, different amounts at different times..) and he was still holding steady in the 300's.

so, a site change it is. maybe it's a bent cannula. maybe there is an air bubble in the tubing. maybe...maybe...maybe diabetes is just being a god damn jerk. 

finally, bens blood sugar did start to dwindle down. slowly, of course. that CGM is sure to make sure that sleep is totally over rated in this house. alarming me that yes, he is dropping, but he is still out of  'range' every 30 mintues...until 3 am. at 6 am, we awoke to a beautiful 102. and off to school he went. 

BAM. here we go again. diabetes, that dumb bitch sure is a jokester.

432. shoot me. 

while hurdling THAT fancy doozie, i log on to facebook to see a flooding of blue candles. in OUR world, the blue candles mean that a child has died from type 1. a child, died. it is heart wrenching, really. because that CAN be ben, at any time. this boy-he was 7, btw, and his parents had slept through an over night blood sugar check. when mom DID wake up, startled, she ran in his room only to find that it was too late. her sweet son had passed on his sleep of a dangerously low blood sugar. 

DIB. dead in bed. funny thing is, there is no telling WHICH low blood sugar will take a life. it's a cruel game. and it can happen in the BLINK of an eye. minutes, that is all it can take to die from a low blood sugar. (a high will kill, too, just not until it eats away your insides first...over time).

i've seen bens eyes roll into the back of his head and pass out with a blood sugar of 75. i have seen ben crawl around on the floor laughing and playing...with a blood sugar reading of 11. yes, ELEVEN. there is no good low. there are only LUCKY lows. as in, we got lucky THAT time.

NOW-don't go and blame mom and dad, it was NO ones fault. we're human. i have done it. slept through an alarm (yes, even MY internal alarm falters occasionally). i have woken up and watched the clock TRYING to find the strength to just get out of bed and do ONE more poke of the finger...knowing that if i had just gotten up when i woke up, i would have been back to sleep by now. but, it's hard. SO hard. i know you all can agree-and say 'i bet it is'...but really, NO one gets 'it' unless they live 'it'. 

so we can't be angry at the mom and dad for sleeping through this night time check. they are going to beat themselves up for the rest of THEIR lives over it. 

what a downer, right? this is what happens in my life today that says 'hey kel, instead of napping-washing dishes-laundry-napping-prepping dinner-napping- go get on the computer and start a blog'.

today, i can't wait for ben to come home. i am going to give him a huge squeeze.

no more for now. maybe i will write more later. but pearl is waking up from her nap. i have to ice a cake and quite frankly, i want to watch my tivo'd episodes of criminal minds before ben gets home from school. fold diapers and prep dinner. but i do have a goal with all of this blogging, and that is to educate SOMEONE about diabetes. all types.1, 2, 2.5, halle berry. even if i touch ONE person, maybe that ONE person will touch someone...and then knowledge will spread. like cooties, or the cheese touch. ew!

not to worry, i could get used to this blogging thing. i find myself hilarious, you should too.