A Happy Movement

My sister died today.  Well, eight years ago today.  Anniversaries of the sad sort are always strange occurrences.  What the heck do you do with a day that marks such a difficult milestone in one’s life?

Baby stepping down the stairs, baby stepping down the stairs…. ~Bill Murray, What About Bob?

Each year has had its own challenges and emotional markers to get through.  But you know, when that endocrinologist walked into our examining room at Morristown Hospital and casually said “Your son is a type 1 diabetic,” everything felt like our world was crashing down all over again.  I suddenly felt like I could relate to the families of 9/11 who, year after year, are reminded of their loss in a bigger than big kind of way.

Grief kind of stinks in a way that it never really goes away, but with it also comes the fact that your memories of the people you love never go away either.  For me, it has been a matter of balancing the sadness with knowing my sister is never really gone.  There’s actually been a few nights I’ve set my alarm at 1 or 3am to check Brayden’s blood sugar and while sleeping through my clock radio blasting, I feel like someone is nudging me and saying “Keerie, wake up!” One of those nights Brayden was 69, a number that untreated for six hours could become very dangerous by morning.

Hey cowgirls, see the grass?  Don’t eat it! ~A League of Their Own

Jenny had a way of entering a room, usually with a Cindi-Britto-sized-burp and reciting some random quote from one of her favorite movies to start off her day.  Everything was fun and worth celebrating.  Her co-workers tell me she kept a candy jar on her desk at work in case anyone was having a bad day and needed something to make them smile.

The day after Brayden’s diagnosis my family came to help watch him while Julian and I went off on many de-briefings from educators, nurses and doctors so we would know how to care for our 14 month old baby with type 1 diabetes.  Man, it would have been so awesome if Jenny had been there.  She would have been living with the disease for over a decade at that point….

There are so many times I say to her “You’re missing it.”  Missing holidays, seeing what a funny and awesome little boy her nephew is…I’ll never have the lunches and phone calls and all the things that sisters are supposed to do together ever again.  Not even the stupid Hallmark magnets and plaques that read “Sisters are forever.”  My parents always told us that as sisters, we would always have each other.

What kind of plane is it?

Oh, it’s a big pretty while plane with red stripes across it…looks like a big Tylenol!  ~Airplane!

When it comes down to it, though, I have so much.  My amazing husband has a job.  We have a log cabin filled with a black pug and a crazy little boy who knows someday he will grow up to be Bret Michaels Phelps Rock Star Olympian.  My family is there to help us at the drop of a hat.  And did I mention I have an awesome brother?  He has his own business, owns his own house and only months before my wedding, stepped in to stand next to me after Jenny suddenly passed away.

“Happy Jenny Day” came about because I felt the need to celebrate Jenny’s spirit and have a positive, awesome way to remember her.  Jenny could never stand negativity and actually fought against it and avoided it every chance she got.  Every time I see a sticker that has cute bugs with smiley faces on them or her “fuzzies” she created with her best friends in high school, I smile.  And that’s what Jenny is all about.  Even though Brayden hasn’t met her, he’s lived in her spirit even the day after he was diagnosed with the same disease as his aunt.

There were many children at the hospital hooked up to IV’s and some seemed very sick.  A few times a day, however, a fuzzy little blonde baby

Brayden playing at the hospital

came around the ward in a red wagon or car wheelchair squealing and carrying on as if he was in Disney World.  One of the other parents commented that their child waited every day to see Brayden come around because it made her daughter smile from her bedside.  No matter where he is or what he is doing, even though he has some really big challenges, he is having a great time and celebrating life.

F-R-A-G-I-L-E….It must be Italian! ~A Christmas Story

It can be hard to be happy, especially with a disease like diabetes.  I felt really alone and sad in the early days of Brayden’s diagnosis and so I took the crappydoddles in my life and turned it into a blog in an effort to maybe find another mom out there who had a baby just diagnosed.

80+ families from around the world later, I think I found her and then some.  That’s the Jenny spirit!

I do, however, with all respect to the wonderful families I have met, need to say this…because I know every time there is a blue candle lit online due to a story of someone passing away from type 1, parents become very scared and worried for their own child’s safety.  I have come to understand over the years that what happened to my sister and my son’s diagnosis are two separate things.  My family’s story is not meant to scare anyone.  If there is anything I have learned from my sister that I feel can help others with diabetes, it’s this:  You MUST respect this disease and learn how to thrive along with it rather than fight it.

But, I think that is true no matter what kind of hardship life can give you.  If you let it destroy your life, well, then…you’re not going to be in a very good place, are you?!  But if you work with it and be determined to move forward, well, then….what do you think?  

So whether it is a funny movie quote, a can of Diet Dew or just making a person smile, today is all about celebrating life and being happy every day, even if it’s just in the small things you do.  You don’t have to have known Jenny to join in the movement, but you do have to want to be happy every day.  It’s exactly what we’ll be doing today and what, I know, Jenny is doing as well.

Hi Kids!

Can we fix it?

Brayden bites into a cupcake, looks that the gaping hole in his snack and asks “Can we fix it?” One time he actually asked me to get the glue gun out to fix a cookie he broke.

A few days ago I hummed Jingle Bells while cleaning out Brayden’s diabetes pack full of used lancets, syringes and alcohol wipe wrappers.  Funny how a few years into the disease I take all the needles so lightly.

A week before Christmas we made a batch of sugar cookies and I thought it was bad B was eating the dough not because of how it would affect his blood sugar but because I didn’t want him to get food poisoning.  So two years into his diagnosis my child isn’t even potty trained yet but I’m proud to say this:

You stop living the disease so much and you start living life.

New Year's Day 2010 at Morristown Hospital

Two years ago today I sat in our driveway while Julian went inside to pack for the hospital and I called my best friend in California crying.  We didn’t know why we were going straight to the hospital rather than spending a quiet New Year’s Eve at home.  No understanding of high blood sugars or diabetic ketoacidosis.  All we knew was something with our baby was wrong.  At that moment nothing else mattered….not the holiday decorations that needed to be taken down, the gift cards to redeem or returns to be made.  I needed to know that whatever was happening with my son could be fixed.

Teresea didn’t have any magical fix, but she was there for me when I needed her.  Sometimes I think that’s all you really need.  I don’t have a cure or all the answers, but some support to get through the scary stuff came sometimes fix things just fine.

A 2010 visit from Teresea

Early into Brayden’s diagnosis I tried taking him to swim lessons in the morning as well as music classes at the local Y.  Oh, geeze was that a disaster.   He was on the most ridiculous insulin that peaked at all different times throughout the day and never allowed us to correct problems without creating dangerous lows.  So I’d get to the Y, park my car and go to check his blood sugars.  356.  482.  65.  WHAT?   I’d either simply drive away and go home out of fear or I would take a 15  month old into a music class where  he would scream the entire time because he felt like crap and leave after ten minutes feeling just as bad as he did because no one else there understood how hard it was to keep a baby with diabetes in decent range so we could all sing “Old McDonald” with musical instruments and parachutes.

Don't leave home without it!

So earlier this year my parents and aunt all chipped in and went with me every Monday morning at 10:30 to the Y so that I could have help at swim   class.  We  had changed B’s insulin and carb ratio (I have  to take credit that these were things I figured out and initiated with his regimen, being the smart pancreas I’ve become….hey, burnout and very little time for yourself has to have SOME benefits, right?) and his numbers in the morning were much better.

An extra pair of hands and someone sitting on the side of the pool to help you in case something goes wrong goes a very long way.  It’s not to say there weren’t some low 300’s in the morning or a few 80’s before getting in the pool that required M&M’s (cue weird looks from other parents wondering why one gives a toddler M&M’s at 10:30 in the morning, but whatever), but having my Mom or Dad there in case I needed help made such a big difference.  They couldn’t prevent issues from happening during swim class, but knowing that if Brayden’s head was going to flop to one side and that I wouldn’t be alone in a cold wet locker room to deal with it myself made me brave enough to go swimming every single Monday we could without fail.

Swimming at the Y

I stared this blog because my college girlfriend Jen told me I should blog about having such a little one with Type 1.  I told her my idea for the name “Diapers & Diabetes” and after she confirmed even her family thought I should blog, I went ahead and started a page on WordPress, not really knowing what would come of it all. I knew I was scared, lost and looking for someone who could relate.

Sixty facebook members later (thank you Lorrie for knowing so many moms!) there are so many neat conversations being had and so many virtual hugs from a mom in British Columbia to another in New Jersey that I’m just not sure what to do with them all!  Reassurance from someone who knows what you are talking about other than a doctor when you’ve switched insulins by mistake and a mom shares her own exhaustion and having to make coffee at 2am just makes one feel a little more human at the end of the day!  D&D has taken on a life of its own and I just get chills to see all the wonderful families and little ones who are doing so well and helping each other through some of this crazy stuff.

There are just some things that break, and while that bite of cupcake may seem sad that something you loved is now gone, there’s that awesome party out there just waiting to be had.

Can we fix it?

No we can’t.  But I know together we are going to make it better.

Watch out, 2012! Here I come!

The Rollercoaster

When I give Brayden his shot in “da butt,” he grips his little hands on my legs and puts his head between my knees as though I am some sort of harness for a rollercoaster.  Ironically, I used to hate strapping him into his booster seat and then sticking him with needles.  I feel like I’m restraining him.  Yes, baby.  We are on one heck of a ride, aren’t we?

None of the parenting books or magazines apply to us.  “New recipes on the go!  How to fix tantrums!  Put your baby down to scream and live a normal life!”  I don’t regret not listening to conventional wisdom, because I would have been ferberizing my baby right into a toxic diabetic ketoacidosis.  Screaming it out my a**.  It could have killed him.  I guess the traditional ride of parenthood just wasn’t meant for us.

Everyday I wake up, get his milk, his needles, two vials of insulin and make him bleed all before even changing his diaper.  It’s like a horror movie version of Groundhog Day only none of this is funny and I don’t get to punch anyone in the face.  We’ve had a tough ride with sleeping, tough ride with getting out of the house, tough ride with this disease.   Diabetes is invisible.  You don’t see the stress and the fear and the exhaustion.  You see a happy healthy toddler running around…how hard could preventing him from eating sweets could the disease be?

Google “diabetic ketoacidosis” and you’ve got your answer right there.

I think this disease…actually any really hard thing that life can throw at you, can leave you so burned out and confused that after awhile you’re unsure which way is up, which way you should go and just like when you are forced into doing something you really didn’t want to do, you don’t feel very good.

It’s amazing that simplest task of feeding a child can now be so scary because of diabetes.  Did I count the carbs right?  Did I grab the wrong vial of insulin by mistake?  What if I pulled the syringe too far and gave him too much insulin?  What if he goes low and I’m not there? 

There are times I want to think “What the heck sort of ride is this?”

I wonder, while you are reading this, if you are thinking “Damn, this girl needs some therapy.”  Well, I am thrilled to say that not only am I a student of the counseling profession, I am also a client.  I found a wonderful woman who has a cozy little space in her home with soft lights and music and tea.   I often compare the feeling of needing more support similiar to Halle Berry’s acceptance speech for her Oscar when she said “This moment is so much bigger than me.”  About a year after diagnosis, I found this new rollercoaster a bit too scary to handle on my own.

When I say “on my own,” I don’t mean physically.  Julian is 100% invovled with Brayden’s diabetes and an amazing father and husband.  Our family has been the best support system anyone could ever ask for.  We’ve actually met some great families along the way and “facebook” friends as well who are going through similar experiences.

When I say “alone,” it’s the experience of being a mom of a very little person with type 1 diabetes who has a hard time sleeping at night, a fear of pulling the syringe below the black line rather than above and a fear that some days the numbers are just awful.  I compare it to the scariest, highest rollercoaster you’ve ever seen and being thrust into the front seat without a seatbelt.

I was feeling as though my brain was completely in knots and I was so incredibly burned out from the terrible two’s and diabetes at the same time I was finding it hard to function, let alone leave the house and go out in public.  I also found myself in panic-stricken situations everytime I waited for the blood glucose number to appear on the monitor screen and just couldn’t see myself living that way forever.

Why on earth am I being public about something so personal?  Am I nuts?!?  No, you are brave and smart and strong.  You know you need help with something difficult that is beyond you.  That and I figure if I am hoping to meet others like me, the only way to accomplish this is to let them know who I am.

I struggle with keeping Brayden from dropping too low.  I give him a few extra fruit snacks, a little more juice or milk.  Anything to keep him from turning into a rag doll in my arms.  A month ago he was 49 while we were out to lunch with my parents.  He walked into The Chatterbox, walked to the booth, sat down and played with the condiments and agreed to sit in my lap so I could check a finger.  49.

Half of what normal blood sugar should be.  His head started to flop to one side.  My hands under his armpits were holding his little body up.  I knew if I tried to stand him up on the floor his legs wouldn’t hold him.  He looked as if he was losing consciousness with his eyes half closed.  My heart racing, I begin to shove two Annie’s bunnies at a time into his cheeks.  He’s fighting me and hitting and pulling at my hair.  I feel like I am Sally Field and Julia Roberts is trying to beat me up on her wedding day.

If a moment like that isn’t bigger than any one person, I don’t know what is.

We took Brayden to the Wildwood boardwalk last summer while down the shore.  He ran around like he owned the place and even tried to scale the metal fence to get on one of the upsidown rides.  No fear, baby, no fear!

I never wanted my child to have diabetes, but I did catch the damn disease in time.  And I have a beautiful boy who loves life more than I could ever imagine.  This whole thing has been so hard, I’ve often felt overwhelmed with the simplest tasks.  But I know Brayden, who loves life as much as he does, deserves more than that.  So I’m working to be brave and appreicate life just as much as my son.

We never waited on line for this rollercoaster.  Sure, we knew we were in the amusement park called “Parenthood The Ride!”  Never thought we were about to be thrown on a ride of twists and turns, ups and downs with no end in sight.

There are two choices you can make in this world when it comes to the challenges life will throw at you.  Follow your instincts or run away in fear.

When life throws you on an unexpected rollercoaster, you may want to curl up in a tiny ball, squeeze your eyes shut and pray for it to be over.

But then you would miss the ride.

Tags: Baby has diabetes, do i need therapy, help!, hypoglycemia, insulin lows, juvenile diabetes, Type 1 Diabetes, type 1 diabetes parents, type 1 diabetes support

Oh, poop!

Diabetes is a messy thing.  There’s needles and counting and blood…alarm clocks for more needles and highs and lows…throw in some diapers and you’ve got a heck of a lot of poop on your hands.

When Brayden was diagnosed at 14 months old, I felt as though I’d been knocked off a speeding train, much like the scene from Pee-Wee’s Big Adventure. (I never did find the Alamo.)  Stuck in a pile of you-know-what, the morning routine of finger sticks and needles and begging him to take in breakfast before the insulin peaked left me exhausted and feeling as though life would never get easier.

I can remember coming home with my husband and baby from a simple afternoon grocery store run thinking “I wish we didn’t have to do the 26 carb insulin finger prick thing again today.”  It would mean chasing Brayden around, sometimes even have food in our hands during bathtime…anything to meet that carb requirement, right?  Sinking in the mud, people, sinking in the mud.  I longed for the days when the biggest thing we had to worry about was whether or not the baby pooped before we left the house. 

They say the first year of marriage is the hardest.  First year of college, first year of medical school.  Firsts are hard.  The first year of diagnosis is no exception.  There’s so many people who will throw advice at you, and there’s double that number of people who will look at you with blank stares when you sit across from them and say phrases like “he had a 49 for a low and then jumped to 417 so we had to check ketones” and you will feel as though you are a part of a very lonely club with members few and far between.  So in thinking about our own first difficult year, I wanted to share with you the highs and lows (complete pun intended) that you may feel during your family’s own initial diagnosis.  I hope the light cursing does not offend anyone, but if you can’t curse at diabetes, what the heck can you curse at?

Month 1

Thrown from a freight train.  Ready…..GO!  You have just been in the ER for 8 hours and admitted to a room at 10pm.  The nurses tell you cheerily to get a good night’s sleep because tomorrow you will be learning everything you need to know to keep your baby alive.  Um, you’re kidding, right?

Month 2 

 Feeling stuck in the deepest hole of you-know-what ever imagined.  Overwhelmed with the uncertainty, emotionally drained and scared you-know-what-less to leave the house.

Month 3

Sinking in that hole and covered in you-know-what, but manage to order a diabetes supply case online and have ventured out for walks outside the house without harming the baby.  Damn, this is scary.  They can’t say how they are feeling and the only way to know is to make them bleed. 

Month 4

Accept you are sitting in a pile of poo.  Go to the mall in defiance and order your toddler a diet soda to make them laugh despite being afraid of judgemental looks that you are giving a tiny one in a stroller soda.  The kid’s got diabetes, OKAY?!

Month 5

Not sure which is worse, sinking in poop or the feeling of sinking a needles into your baby’s bottom?  Wake up at 2am, 4am, 6am even though your baby is sleeping right next to you to check their color, skin, temperature, their outfit.  125…will it go down?  Up and wake up with ketones?  What are ketones?  How do I get a baby to pee on a stick? 

Month 6

Start to look around and see all the you-know-what in a clear way and begin to understand how to handle it.  Someone explains what “basal” and “bolus” means and for once, it actually makes sense.  Hey, maybe this sh*t isn’t so hard afterall.

Month 7

This is really hard sh*t.  Wish you were like all your “normal” friends who are not covered in you-know what.  You possibly consider support groups or contacting that mom from the hospital who also has a situation like you, but back out because you are just too emotionally exhausted.

Month 8

Realize there is no “normal” and start to clean yourself off.  A drawer in your kitchen and shelf in the bathroom have neatly become storage for supplies and the sight of all this no longer makes you cry.  You have found mail-order supplies and have finally paid off the copays from the $18K hospitalization.

Month 9

Take your abnormalities and start to get creative and make them work.  You realize marshmallows and fruit snacks can do magical things when that meter reads 62, although it does little for your own nerves.  You email the mom the hospital referred, set up a playdate at McDonald’s and yes, both little ones have ice cream.

Month 10

Thought you were on top of the world, but there have been tantrums at every playdate and outing you’ve been at and can’t seem to manage the high blood sugars in the morning and feel like a failure because no one else’s 18 month old is screaming at parachute play with a reading of 417 because no one else’s 18 month old has DIABETES!?!&*&#&*#

Month 11

Take a month off and lightly ignore the disease that has infiltrated your life.  You still count carbs and do finger sticks, but you are tired and just don’t want to talk about it. 

Month 12

You find yourself no longer sinking in a pile of sh*t.  You WILL see the end to this year, you WILL get through this and you are NOT alone.  Maybe you will have a 428 and a 54 in the same day and feel as though you have failed.  Your baby will get an ear infection and ketones which might scare the living daylights out of you so you go the ER just in case there’s a problem.  You cry, play, enjoy your baby and desperately look for someone who understands just how hard this all is when all you want to do is curse and laugh all at the same time just to get through the day.

Welcome to DiapersandDiabetes.com. 

Please join us for our “Grand Opening” on March 29, 2011.

~Cari~

 

(In the meantime, please find and join our group Diapers & Diabetes on Facebook)

Tags: Baby has diabetes, juvenile diabetes, Type 1 Diabetes

Hi Kids!

Hi Kids!  I’d like to tell you a story….

 

Sometimes things just suck.

December 31, 2009: Six hours after diagnosis we were finally admitted from the ER to upstairs in the children's hospital

You can’t do anything to fix it, you can’t make it better no matter what you say….and that’s okay!  

Sometimes I hear from others that it’s good Brayden was diagnosed so young, because diabetes is all he will ever know.  Uhhh, doesn’t it kinda stink that’s all he’ll ever know?  Others say that if he loses weight and exercises the diabetes will go away.  Nope.  That’s about as logical as telling a paraplegic to get up and walk. 

I prefer having people there to listen.  Or ask “How are you?”  No cure, no fix, no advice.  Just be there.  The gift of presence is a great thing.

Jenny used to announce her presence by walking into a room and exclaiming “Hi Kids!”  It was her way of letting everyone know she was there.  Brayden’s taken to saying it now and it makes me smile every time I hear his little voice peep out the words my sister used to use.  Keeps her presence with me in a fun way.

Just before Brayden was born Julian asked me “What can I do when you are in labor?”  After thinking for a moment I realized there was nothing more comforting than remembering a childhood filled with bedtime stories of my parents as children, what my great great grandfather was like or the silly things I used to do as a baby.  There’s just something about being told a story in a loving way that takes you to somewhere happy.  So I responded that stories to take my mind off whatever was going on would be wonderful.

At 4am, two hours into labor and one hour later than I should have asked for an epidural, I couldn’t see straight from the pain.  I started to cry, but as I did, Julian started to play my hair and tell me a story…..

He talked about the memories he had up at the lakehouse my grandfather built, and how much fun we always had with Jenny and Robby and how peaceful it all was.  He took me back to one of my most favorite places in the whole world and to a time when my entire family was together.   His story became a magical way of making my sister a part of the birth of our child, something that after she died, I dreaded going through without her.

The gift of presence for someone has that kind of power.  You can’t fix pain, you can’t make it go away, but you can BE there for someone. 

New Year’s Eve will mark the one year anniversary of Brayden’s diagnosis, and we’ve wondered what on earth to do on such a “holiday” now.  This time of year there are so many charities, so many families, so many needs that come to mind that we’d all like to help.  I ask not for money, or items or even much of your time.  I’d like to ask you for a different kind of gift.

There will be a lot of families with children in the hospital this New Year’s Eve, and let me tell you, it’s a lonely place to be.  There were children attached to IV’s, children who were bedridden, a boy from a bike accident who almost didn’t survive, and four or five children that weekend alone just diagnosed with type 1 diabetes.  Most stayed in their rooms with their parents, seemingly ignoring the fact there was a holiday outside the hospital. 

Brayden playing at the hospital

If anything could have made that night better, it would have been knowing we weren’t alone, and perhaps having something to take us away from that moment and into a happier place.  Someone who could reach out and say to us “Hi Kids!  I’d like to tell you a story…”  It really would have been wonderful to have known that amidst a holiday full of celebration and parties, there were others out there thinking of us, knowing that sometimes things just suck, and although they couldn’t fix it, they could remind us that they were there for us.

So if you have the time and have a sweet story to tell or know someone who might be looking for an inexpensive way to give to others this holiday season, send it along on this blog as a gift of the magic, memories and love that life can bring us.  The stories will be complied in a booklet and copies for the families will be sent to the children’s hospital on December 31, 2010.

It won’t cost you a thing, just your presence.  Perhaps 365 words or so and post it to this web site.  Here, I’ll even get you started….

Hi Kids!  I’d like to tell you a story…

Keep Moving Forward

We keep moving foward, opening new doors and discovering new things, because we’re curious and curiosity keeps moving us down new paths.  - Walt Disney

We planned on putting Brayden on the pump in early September.  I had an entirely different blog set up for “Twas the night before pumping.”  It didn’t work.

Maybe it didn’t work because we tried sticking a thumbtack in Brayden’s ass and he thought that wasn’t cool.  Perhaps we need more time for him to get used to the idea of living with fanny pack.  (Heck, who wouldn’t need more time for such a fashion statement?!)

I have big head, and little arms.  I’m just not sure how well this plan was thought through.  ~TRex

No one knows how to change a diaper with a baby attached to tubing.  No one seems to know how to convince him to keep it on all day.  How about potty training while there’s tubes coming out of his bottom?  Where are the logistics that are thought through for this thing?!

Sorry, I’m venting.  It’s been a long ten months of needles and fruit snacks and doctors and people thinking Brayden has diabetes because we spiked his bottles with pixie sticks. 

Probably why I took September off from blogging.  Just tired of diabetes talk.  His doctor said he wanted to help us put the disease on the back burner so we can get on with our lives.  Sorry again.  Water’s still boiling over here.  Think the dog might have even burned his paws the burner’s so hot.

The insulin therapy prescribed upon diagnosis was very difficult. His blood sugars ranged from 38-500+ and there was no real way of knowing when the insulin was working, leaving us with a baby going as limp as a rag doll at 11am as well as 6pm.  For the last ten months I’ve felt like a prisoner to this disease.  Having a kid at 30 or 500 in the mall really isn’t fun at all.  I feel safer in my living room than anywhere else.  Anyone feel like watching Elmo’s World for 10 hours straight with a crazy mom and her pug?  I’m exhausted.

 …don’t you know?  The hardest part is over. 

It seems like I complain a lot on this blog.  But we really are okay, and we really are happy.  Brayden is a personality and a half, and we’ve come up with a lot of things to make our lives better. 

We “built” a nest of blankets and pillows in our living room so he’d have a comfy place to hang out while we pulled out needles, carbs for every meal and watched endless Elmo DVDs.  We figured out that a bottle of ovaltine, yogurt and milk equals a perfect 26 carb breakfast that he’ll down in an episode of Sesame Street so we don’t go completely insane trying to force feed him food for two hours.  His favorite fruit snacks have become a lifeline for us when his blood sugars are low. 

Keep moving forward…

Now we have a new insulin regmine:  two shots in the morning and a shot everytime he eats to cover his carbs plus a bedtime shot to keep him in control overnight.  Recently at the hospital I was told that the needles don’t really hurt.  I’m not sure I believe that. 

He can’t have a snack whenever he wants without shots.  We take him to the very hospital every three months where upon diagnosis we had to restrain him for an hour while they found a vein that wasn’t collapsing due to severe dehydration and ketones.  Some days I find my fingernail or shirt sleeve stained with his blood.  The path of diabetes is full of sharp, pointy painful things that tear at my heart. 

I’m pretty sure the 50+ finger pricks and 35 shots every week hurt, too.

I remember when we took Brayden to the pediatrician New Year’s Eve.  He’d been refusing to eat but just kept asking for more to drink.  He was wetting his clothes every hour.  He looked fine and was acting normal, but the night before something in me clicked.  I looked at him swallowing cup after cup of water and remembered Jenny saying “No matter how much I drink, I’m still thirsty.” 

I almost broke down when our pediatrician told us that rather than going home for a quite evening of take-out on New Year’s Eve, we were being sent to the hospital immediately due to high glucose levels in the urine test.  Julian was quiet; in shock.  Brayden, toddling around and digging in the toy box, came over to me.  He wouldn’t let me cry, and that was a good thing.

Let your clarity define you….

I was in Shop Rite at 11:30 at night when I found out Jenny died.  Julian was packing up his apartment and we had just closed on our cabin in Sparta.  I was picking up some small things for a late dinner when I saw the call come up on my cell phone.  Mom?  Why on earth is she calling so late? 

There’s something to be said for the moments that define our lives.  When life takes a brick and smacks you upside the head, it’s the decision to keep standing rather than fall that can really dictate how you manage the way you live the rest of your life.

In that second, I envisioned some stock boy carrying me to the front register and calling 911 while I came around.  But a little voice in my head said “Run.”  I wanted to collapse and give up on life, but Jenny knew there were other plans in store for me.  I am curious what they are.

Brayden’s endocrinologist said many parents feel incredible guilt that their child has diabetes.   He said rather than allowing one to become enabled by the difficulties life has given them, it’s important to remember those who build great character rise above the conditions that could hold them back.  They keep moving forward. 

Shouldn’t we all?

Our lives remain in these small hours, these little wonders. 

 

Thanks for a great song, Rob Thomas & Disney for such a fun movie.

Diabetes makes you want to throw things in the toilet

On August 28, 2004 Julian and I were married five months after my sister died suddenly from complications with juvenile diabetes.  Never in our wildest dreams could we have imagined our son would be diagnosed with the same disease as Jenny.  I liken the beginning of our marriage to a foundation built on quicksand;  there wasn’t a strong foundation because I was a disaster.  My choices, however, were either to go forward with the wedding or completely flush my life down the toilet and cancel the affair because I just didn’t know how to get out of bed in the morning. 

Chase all the ghosts from your head, I’m stronger than the monsters beneath your bed

I chose, obviously, Option A.  A sibling’s opinion of your life can have a huge impact on the way one looks at the world, and Jenny’s was no exception.  Upon meeting Julian for the first time, she pulled me aside and said “Keerie, we LOVE him, he’s perfect for you!”

Smarter than the tricks played on your heart

I was sold.  Having my sister’s validation that I was doing the right thing meant the world to me.  I held tightly to those words in the days following the morning of March 29, 2004 when Jenny did not wake up.  Not only was I completely in love with my husband-to-be, but her words guided me to move forward with life rather than flush it away.

Look at them together then we’ll take them apart

When Brayden was diagnosed New Year’s Eve 2009, we were completely exhausted by the time we arrived in his hospital room at 9:30pm.  We’d been in the ER since 2pm and hadn’t eaten a thing (not that we wanted to).  The nurse wheeled in a cage that was supposed to be a crib, which I outwardly refused and told them to bring in a bed so I could hold my baby.   This allowed Julian to stay in the room with us as well.  We wouldn’t have had it any other way but to be together.  The doctors warned us to get a good nights sleep because tomorrow would be a big day for us.

You’re kidding, right?  You want us to sleep soundly in this awful room with beeps and needles and not knowing what on earth is going on every time you come in here sticking him and taking his blood.  You want us to be in good shape so we can be bright eyed to learn how to keep him alive?  Um….I think we need a few more weeks before we’ll be ready for this.  Maybe next year.

Maybe never.

But, sure enough, morning came.  As we struggled to contain a 14 month old attached to an IV for two hours, we were told by doctors and nurses that this wasn’t their normal shift because it was New Year’s Day and that they weren’t supposed to be here.

We weren’t supposet to be here either.

Adding up the total of a love that’s true

The diabetes educator came to bring us out into the lobby of the children’s ward and teach us all we needed to know.  She wasn’t usually the educator for families, but since it was a holiday she came in and had a short amount of time to give us an overview of what we needed to do.  As we walked through the halls Julian and I held hands.   Held hands because we were terrified.  Held hands because we weren’t sure what else to do.  Held hands because from this point forward we were the united front against our son’s awful disease.

The minster who married us told me that children chose who their parents will be before they enter this world.  I get the impression Brayden and Jenny met before he got here and that she helped him find the best pair of parents who would best help him through this journey. 

Now the steel bars between me and a promise suddenly bend with ease

I didn’t sleep much New Year’s Eve 2009.  I lay awake staring at our son horrified at the day that had unfolded before us.  I remembered when Jenny was first diagnosed she was scared to inject herself with her first syringe.  She would pick it up, put it down, pick it up, put it down.  She just couldn’t do it.  I offered to do it for her in an attempt to help ease her into the awful concept that this would now be her everyday task with the diabetes.  I never did get the opportunity to help her with her disease.

Julian was inistent that he give himself injections and finger pricks as soon as he had the opportunity.  He said he didn’t want to do anything to Brayden before he knew how it felt.  Later I learned that when the doctor in the ER first told us that our son had diabetes, Julian thought that the diagnosis meant we wouldn’t be taking Brayden home.  His only experience with the disease was that when you have diabetes, you die.  For him to completely immerse himself in needles just one day after learning such a devastating diagnosis makes him one of the most amazing men I have ever known in my life.  Jenny was right that he was the perfect person for me.  Our minister was right we are the perfect parents for Brayden because I know we are taking this disease head on and refusing anything less than a wonderful life for our son.

I took us for better and I took us for worse, and don’t you ever forget it 

Now we’ve both agreed to wear Brayden’s new  insulin pump so we can again understand what our son will be going through.  Our nurse warned us that for awhile we wouldn’t be used to having a device attached to us with tubing and not to drop it in the toilet. 

So far I haven’t dropped it at all, let alone the toilet, although I must say a friend’s comments that even peeing is different is certainly true.  It takes an extra step to unhook your clip, figure out where you will re-hook the pump so it won’t plop into the water and then do a lot of creative juggling with clothing so as not to pull the tubing.  Next time you meet someone and you learn they have diabetes, tell them they are incredible human beings.

Thanks to my sister I didn’t throw a perfectly good marriage into the toilet.  Thanks to our nurse the pump hasn’t ended up in the toilet (yet).  And thanks to the love and support of so many people around us, our son’s life and success with the disease is being thrown in a wonderful direction. 

Multiply life by the power of two

 

Thank you Indigo Girls for their inspirational song “Power of Two” off their album Swamp Ophelia