10 Years Ago Today

This morning as I was pouring my first cup of coffee I had the thought that 10 years ago today at that time I had no clue what was to come. I had no clue the tears and the sleepless nights that would follow. I didn't know then that my son's life would forever be altered.

10 years ago was a blur of wet bed sheets, begging for water, a "HI" on the blood sugar machine, teeny tiny fingers oozing drops of blood, a hospital room, IVs and bubbles, salty tears and the smell of band aides. I will never, ever forget that day for as long as I live. Every year I think the anniversary won't evoke too many feelings. And, every year it does.

Back then, Riley was a little thing. Each blood sugar check evoked much curiosity as he looked on in fascination at the blood oozing from his little finger. Now, he's only an inch shorter than me and blood sugar checks occur while he carries on a conversation with his friends, barely even glancing at his finger in the process.

Back then, he ran from us when we tried to give him insulin. Now, he receives his insulin via a pump but bemoans his sensor change for about 30 minutes before finally relenting and bracing himself for the needle stick. Then, we were checking his sugar upwards of 15 times a day. He had no sense of being low. Now, he checks 2 times a day and his wonderful super-fantastical Dexcom (WSFD) does the rest. Then, I was up many times during the night and walked around like a zombie all day. Now, his WSFD alerts me of lows and highs and I sleep through the night almost every single night and feel like a human again.

Lots has changed since that day 10 years ago. But, one things still remains. An insidious disease resides in my little man's body. It dictates moods and eating habits. It attends all birthdays and holiday functions. It rears it's ugly head in the middle of sleep and soccer games. It lulls you into thinking all is well only to strike out with no notice. That will never change.

Diabetes will go off to college with him. It will be at the altar on his wedding day and in the birthing room when he hears his child's first cry. But, it will not taint those days because he won't let it. He will revel in the freedom and scariness of being on his own for the first time. He will stand in awe as he looks at his beautiful bride walking toward him down the isle. He will count each little finger and toe and wonder at the sweetness he had a hand in making.

Today, I am thankful for a happy, healthy Riley. I am thankful for all the advances made in diabetes care over the past decade and for more to come. I am thankful that even though diabetes is a part of his life, it will never BE his life. I am thankful, so, so, thankful that I get to be his mom. All of that trumps diabetes every single time. And it always will.

Hope Springs Eternal

While sitting on the couch last night taking a break from the movie we were watching I decided to click on Facebook to pass the time.  I saw a post by a fellow D dad.  His son and Riley are very close in age and dealing with the same all-consuming stupid disease that is Type 1 diabetes.  We’ve been “friends” for years.  I know little about him.  But, the only thing I really need to know is that he hates Type 1 diabetes as much as I do.  And, he has the same ache in his heart for his son that I have for mine. 

I clicked on this video.  I knew it was about the clinical trials being done now to test the bionic pancreas.  I’ve been reading some about it.  Just the other day I found out one of the participants is a little girl whose mom has a blog I used to read.  She was just one year old when her pancreas decided a permanent strike was in order.  I was so happy for her and for her family.  I also thought how great it would be for Riley if this artificial pancreas thing pans out.  And, then I promptly put it out of my mind. 

Like I said, I knew it was going on.  But, I’d kept myself on the fringes of it.  I knew about it but I didn’t really want to KNOW about it; didn’t want to get too close to it.  I didn’t even realize that’s what I was doing until last night. 

The video began innocently enough.  I was watching.  They were explaining what Type 1 diabetes is and how they were able to fund this trial.  They show the kids running around, splashing in the mud, playing games all while grinning from ear to ear.  I felt a little lump forming in my throat and the sting of salt water behind my eyes. 

Then, it got to a part where they show a group of girls sitting around a table.  The camp counselor is explaining that 8 of the girls will be on the bionic pancreas for the next 5 days.  And, during those days their diabetes will be cared for exclusively by this little medical device.  That means there will be no sugar checking, no carb counting, no activity restrictions, no middle of the night sugar checks; you know, those things all the rest of us take for granted every day.  There was clapping and a countdown and smiles all around. 

And, then I lost it.  I started bawling like a baby.  I was overcome with emotion that this is going on, that this is REALLY happening.  This isn’t some far off in the future, maybe-one-day-we-can-hope-for-this-kind-of-thing that we diabetes parents are used to.  We’re used to hearing “this might be possible one day” or “whenever we can get enough funding”.  But, “Hey, look, this wonderful awesome thing that will benefit your child, it has come to fruition and we’re getting to test it and the findings so far have been great.”?  Yeah, we don’t hear that too much.  Like, not at all. 

After the video was over, I sniffed for a while and wiped my eyes and got my emotions under control and went back to watching the movie.  But, something felt different.

Today, I watched the video again, this time with Riley sitting by my side watching it with me.  Out of the corner of my eyes I watched as a grin spread across his face as he took it all in.  When the guy said that the device would do all the work, Riley turned to me, his grin widening and said:  “That means you wouldn’t have to get up in the middle of the night and check my sugars anymore.” 

Really?  That’s his first thought?  Not, “Yay me!  No more sugar checks, no more carb counting, no more having to factor this in to soccer practice.”  No.  His first thought was for me.  I wish I could take the credit for how awesome he is.

Of course, by the end of the video I was bawling again.  Riley looked at me in that pre-teen my-mom-is-crazy way and galloped off to his room to build worlds and mazes on his computer.

I sat there, a familiar feeling in my chest.  It took a moment for it to register what it was.  It was like a scent you catch on the breeze and it makes your stomach flutter but you’re not quite sure why.  Then, it dawned on me what it was. 

Hope. 

It was hope. 

Hope that one day Riley really will be able to just live his life without giving thought to whether what he is doing or eating may affect his blood sugar.  Hope that when he goes off to college I won’t be up at night wondering if he’s up at night checking his sugar.  Hope that when his first child is born or he’s standing at the altar waiting for his bride to walk in that diabetes will be the furthest thing from his mind.  Because, he won’t have to think about it anymore.

I don’t know when I pushed hope to the background.  I don’t think I ever gave up hope.  But, somewhere along the way I gave up hope on hoping. 

How did that happen?  Hope has been my mantra almost from the moment Riley was diagnosed 8 years, 9 months, 15 days, and 2 hours ago.  I even have the word “hope” emblazoned just under my left collarbone.  A reminder that no matter what, all is never lost.

I realized I had given up hope on hoping for one simple reason: what if it never happens?

But today, instead, I’m thinking: what if it does?

Oh. My. God.

What if it does?

Type 1 Diabetes Invades Another Home

I was sitting in the gym early Saturday morning.  While waiting for Riley’s basketball game to start I got on Facebook on my phone.  I had a message.  When I checked it, it felt like my heart immediately sank into my stomach.  The message relayed that a girl that I’ve known all her life, a little girl the same age as Riley, was just diagnosed with Type 1 diabetes.  Immediately upon reading it tears stung my eyes. 

I spent the rest of the day reliving the day Riley was diagnosed.  Little images would flash through my mind.  I thought of that morning at home, checking his sugar because I knew something just wasn’t right.  I remember gasping when the meter flashed “HI” instead of a number.  I remember running around in a fog trying to get things together to take with me.  I knew, knew deep down, what was wrong and I knew he’d be admitted to the hospital.  I remember throwing his sheets in the washer before leaving, because he had, yet again, wet them during the night.  (A sign of high sugars.)  I remember berating myself over and over for letting him have a pop tart and apple juice for breakfast. 

Saturday night, in the middle of the night, each time I got up to check Riley’s sugars, the girl and her parents would come to mind.  Each time I silently said a prayer for them.  They came to mind off and on the next day too.

Last night, I missed a phone call.  When I checked my messages I heard the voice of the girl’s grandfather.  He said he was just calling to check and see if I had the same number so he could pass it along to the girl’s mother.  I was glad he was doing that.  I am more than happy to offer support.

Again, a flood of emotions rushed in.  I kept thinking of the girl’s mother.  I kept wondering what I would say to her and if I’d even be able to say anything at all.  Every time I thought of it, I would start to cry. 

I completed some chores and then I ran a nice, hot bubble bath.  I sat in the tub as tears streamed down my face and made tunnels in the bubbles.  I ached, actually ached, for this girl and her parents.  Again, old emotions surfaced.  Emotions of guilt for not realizing Riley’s symptoms sooner.  Feelings of guilt for passing along faulty genes to him.  But, mostly, I remembered the feeling of complete and utter helplessness.  I remembered wanting to “fix” my child, my baby, and being completely helpless to do so.  I remembered crying and screaming at God to take it away from Riley and give it to me.  I remembered hour upon hour just sitting on the couch in a fog watching Riley play and run around looking for any sign of a low.  I remembered staring at the clock, consuming myself with when it would be time to check his sugar again.  I remembered chasing Riley around the house to hold him down to give him a shot.  I remembered the feelings brought up from hurting my child to help him.

When I got out of the tub I thought about writing this post.  Then, I decided maybe I should wait.  My emotions were too high and I knew it would be nothing but a downer post.  Things look and feel different in the light of a new day.  I needed to feel what I felt and I needed time to process it so I could move on. 

The thing it all comes down to is this:  Type 1 diabetes sucks.  It sucks big time.  There is no, ifs, and, or buts about it.  Once this disease invades your house, your life and the life of your child will never, ever be the same again.  Type 1 diabetes is like an uninvited house guest that no matter how hard you try to ignore will just not go away.  It comes in and changes the whole atmosphere.  It changes how and when you eat.  It changes how and when you sleep.  It doesn’t leave and give you some space to just enjoy birthdays or holidays.  Nope.  It’s always there.  Always lurking.  Always, always, always demanding attention. 

BUT, everything is going to be OK.  This girl will be OK.  She’s smart.  She’s an athlete.  She has a great support system.  Her parents will be OK.  They will learn, by trial and error, what works for their daughter. 

This girl will go on to do and be whatever she wants.  Diabetes will not stop her.  Diabetes will not define her. 

In the light of day, I see that now.  My mind knows it to be true.

Intellectually, I know that everything will be fine.  But, my Mama-heart aches.  It knows the pain and the sleepless nights.  So, while I know that life will eventually be a new normal for this family, my heart aches for all that it takes and will always take to make that new normal happen. 

Diabetes is Sneaky

Riley’s 8 year diaversary is coming up next week.  8 years.  Wow.  It’s hard to believe we’ve been doing this for 8 years.  Also, it’s hard to believe we ever lived a life where we didn’t do this. 

Riley is 11 now.  He’s at an age where the majority of diabetes things fall in his lap.  There is no nurse at his school.  He is solely responsible for caring for his sugars while he is there.  Some days it is hit and miss.  Some days he forgets to check his sugars.  Some days he forgets to bolus for food.  And, some days, he’s just plain sick of it and ignores it all.  Figuring out how to “punish” him is difficult.  On one hand, isn’t diabetes and all the crap that comes along with it punishment enough?  But, on the other hand, this is his health and well-being we are talking about.  I want him to live to a ripe old age and enjoy his grandbabies, free from complications from this stupid disease.  So, I muddle through the murky waters the best I know how.  Some days I think I get it right.  Most days, I think I don’t.  Currently, he is grounded, not for not bolusing, but for adamantly lying to me about it.  Which brings into play, why is he lying about it?  Am I too hard on him?  Blah.  Murky waters indeed.

You would think after 8 years the ins and outs of daily diabetes care wouldn’t affect me anymore.  But, it does.  Not anywhere like it used to but it still affects me.  There are nights when I prick his finger at 3 AM to check his sugar that I think how wrong it is.  How there is no way I should be sticking my child with a needle several times a day and not give it a second thought.  There was a day not too long ago when I picked up his set and hurled it across the room.  I had just changed his needle and seeing his set sitting on the bed next to me angered me.  I just couldn’t stand to look at it any longer. 

I guess the biggest difference between now and 8 or even 6 or 7 years ago is when it affects me.  When Riley was first diagnosed, and several years thereafter, diabetes inundated my life.  It filled up every single aspect.  It affected my emotions, my sleep, almost every thought.  Now, it sneaks up on me when I’m least expecting it.

Yesterday, little man and I were sitting on the couch watching a TV show, The Little Couple.  They recently adopted a little boy from China.  On this episode he was having surgery.  They were talking about how hard it was to have him go into surgery.  The father said how he had burst into tears a few days earlier while thinking about it.

This prompted Riley to turn to me.  “Mom, did you cry when I was put in the hospital when I got diabetes? “  I just looked at him and said:  “Yes.  I cried every single day for a long time.” 

“Did Dad cry?” 

“I’m sure he did baby.  But, not in front in me.  I think he was probably trying to be strong for Mommy. I know Holden cried.  I’m sure we all cried.”  Everyone cried except him.  He never shed one tear.  Not even when they started his IV. 

At that moment I turned and looked at him and his big beautiful brown eyes.  The thoughts of waking up next to him in the hospital bed that first morning came flooding into my mind. I looked at him and said: “You were so little just lying there.” And, right there in the middle of The Little Couple I burst into tears. 

So, sneaky; sneaking up on me like that right in the middle of a TV show.  And, sneaking up on me again just a few minutes ago when I re-read what I had written: “He never shed one tear.”  My eyes spilled over yet again thinking about my strong, brave little boy who I wish never had to be so strong and brave. 

So, so sneaky….

 

The Blessings of Diabetes

Saturday (Oct 6) was Riley’s 7 year anniversary of his diagnosis.  In years past, I would anticipate the day.  I would worry about how I would handle it and the emotions it brought up.  This year I didn’t do that.  I am learning to live one day at a time.  Each day has enough worry of its own.  There is no need to borrow worry from other days.  So, I really gave no other thought to it other than it was the day of his diagnosis and that we would need to plan how to acknowledge it like we do every year.  This year Riley had two baseball games that day, making it hard to go out and “celebrate” like we usually do. 

The day started off fine.  But as the day progressed my emotions began to get the best of me.  All of a sudden a flash of a memory from that day 7 years ago would pop into my head.  A flash of crumpling into my husband’s arms and sobbing while my oldest son cried quietly in the corner.  A flash of the look on the doctor’s face as he gave us the news.   A flash of that tiny little hand with that big old IV sticking out of it.  A remembrance of crawling into the hospital bed that night and waking up next to him in the morning with fresh tears on my face because it hadn’t been a dream as I had hoped.  Try as I might to push those thoughts out of my mind they would pop up without notice.  It was strange, really.  I hadn’t expected to have so much emotion.

I was sitting in the bleachers waiting for Riley’s ballgame to start and it hit me.  I was reading something on my phone and, out of nowhere, the tears began to sting my eyes.  I sat and blinked them back.  Then, I headed to my car so I could compose myself.  I sat in my car and prayed a prayer of thankfulness.  Thankful that Riley is happy and he is healthy.  7 years ago I never would have dreamed of how full his life would be.  He is a great kid with a great attitude.  He plays 3 different sports (and plays them very well, thank you).  He’s not been readmitted to the hospital since diagnosis.  He’s never gone into DKA.  He’s never had a low severe enough to warrant glucagon or to cause a seizure.  Health-wise he has been blessed beyond measure.

But, it’s not just about the health.  I’ve wrote about this before.  The health stuff, the needles, the carb counting, all of the stuff that most people think is the big stuff is really the little stuff.  The big stuff is the emotions, the feeling of being different from all of his peers.  The frustration of not being able to participate in sleep overs (yet).  The frustration of being tethered to a pump 24/7/365.  The emotions of being hungry and not being able to eat because his sugar is too high. 

Riley is blessed beyond measure in that aspect too.  Yes, he has times when he yells about diabetes.  He has days when he gets frustrated by consistent highs or lows.  He has his moments.  But, through it all, he’s got his head on straight.  He has the right perspective about all of it.

About 3 months ago Riley and I were just finishing up devotion before bed.  He was sitting in the bed next to me, little head propped up on pillows.  I looked at him and said, “You know I would take diabetes away from you if I could.  If I could take it away from you and give it to myself I would.

“I know, Mom.”  There was about a 30 second pause as he stared at his hands.  “But, I wouldn’t give it to you.”

“Why wouldn’t you give it to me?”  I thought he was going to say because he’s used to it and he wouldn’t want me to have to learn to live with it.  I wasn’t prepared for the wisdom that he was getting ready to impart. 

“Because it is mine.  Maybe God gave me diabetes for a reason.  Maybe it’s a blessing.  You don’t know.  I want to keep it. “

What has taken me more than 30 years to learn my little man has learned in 10.  What many would see as a curse, he sees as a blessing. 

So, as I sat in my car at the ballgame praying prayers of thankfulness for Riley’s health I also prayed prayers of thankfulness for the lessons he’s learned and the strong, beautiful, brave, and wise little boy he has become. 

Diabetes does not define him but it has helped shape who he is.  And, I’m proud of who he is.  Would he be that same strong, beautiful, brave, and wise little boy if diabetes had never touched his life?  I don’t know.  And, I’ll never know.  My guess is that even though he would be awesome without diabetes, he’s even more awesome with it.  

Same Old Fears Different Day

Most days I can forget how dangerous Type 1 diabetes is.   I can forget the havoc it wreaks on the body and on the mind.  I can forget that it kills.  I guess it’s a defense mechanism.  If it was at the forefront of my mind all the time I would go insane.  I have to convince myself that if we just check sugars and dose with insulin all will be well.

But, then something like night before last happens and it all comes crashing down.  All the fears I keep tucked safely in the back of my mind come tumbling out of my head and fill up my heart. 

It started out like every other night with a quick check of the sugar before he went to bed.  All seemed well.  Every check thereafter was higher than the next.  He would get a dose of insulin and 1-2 hours later his sugar was the same or higher.  And, let me stop right here and say:  I know I should have dosed him with a syringe.  I know, I know.  I have no excuse.  But, I am human and sleep-deprived.  My plan was to get him through the night and change his needle first thing in the morning.

Fast forward a couple of hours.  His sugar was 466.  I could not tell you how long it’s been since I’ve seen a sugar that high.  I knew I had to do something.   As tired as I was I knew I had to change his needle.   He awoke and said he needed to use the restroom.  Of course with a sugar that high I expected nothing less.  But then he said his stomach hurt and he felt like he was going to be sick.  He heaved but nothing ever came up.  And I knew with guilt only a mother can feel that he had ketones. 

I had him gulp water to try to flush them out.  I changed his needle. When I removed the old one the cannula was completely bent and flat.  He had not been receiving any insulin.   He hung off the bed feeling horrible.  Usually when I have to change his needle in the middle of the night he puts up a lot of resistance.  Not this time.  He just felt too bad. 

An hour later I was up and checking his sugar again.  It was coming down nicely, thank God.  I leaned over and kissed his cheek and smelled that familiar smell that parents of kids with Type 1 know anywhere, the sickly sweet smell of ketones.  I haven’t smelled it in years and years, but you never forget that smell.

And, then there was more guilt.  I should have changed his needle sooner.  I should have given him a dose of insulin with a syringe.  I should have not been worried about sleep.  I should have….

Then the “what ifs” started.   What if I’d not checked his sugar all night?  What if it was too late when I finally changed his needle and he went into DKA?  He could have ended up in the hospital.  He could have died.  What had those sustained highs done to his eyes, his heart, his kidneys? 

November is National Diabetes Month.  I haven’t been as vocal about it is as I should have been.  To say I’ve had a lot going on is an understatement.  Still, I have to remember what’s most important and that’s the health and well-being of my child. 

I’m not being dramatic, he could have died.  If I hadn’t of caught it early enough and done something about it, he could have slipped into a coma and died. 

So, my friends, I’m asking for your help.  Please donate today in honor of my little man.  Dr. Faustman is doing awesome research that I believe will one day lead to a cure for Riley and all the others who deal with the needle sticks, the restrictions, the fears every single day. 

If you would like to help go here and donate.  Every little bit helps.  Also, Saturday is my birthday.  Want to get me something?  Well, I’ll take a cure for Riley please.  Your donation can help make that possible. 

One day he will sleep through the night without worry.  He will run and not have to check his sugar.  He will see a cupcake and just eat it without figuring carbs and debating whether it’s a good idea for him to even eat it.  Would you like to be a part of making that happen?

Happy 6th

Six years ago today my world, the world of my 3 year old son, and my family’s world was turned upside down by six little words:  “Your son has Type 1 diabetes.”  We were all suddenly thrust into a world of carbs and insulin.  My little man was thrust into a world of endless needle sticks and food restrictions.  My husband and I were thrust into night upon night of interrupted sleep. 

Looking back on that day I had no idea what was really in store for us.  I knew it was going to be hard, but I couldn’t fully comprehend just how achingly hard it would be.  All I knew was how hard it was to stick my child with a needle or how hard it was to tell him he couldn’t eat or drink something.  I know now, that was the easy part. 

I now know the hard part is the fear.   The fear of waking up one morning and finding him dead in bed.   The fear that I’m really not strong enough to handle it; that I have no clue what I’m doing and that instead of helping him I’m really harming him.  The fear that one day he will rebel against this disease and just stop managing it at all.  The fear of blindness, limb amputation, kidney failure.  The fear that there will never be a cure. 

For six years I’ve been carrying around these fears.  The pain from this fear isn’t as stabbing as it once was.  It’s softened around the edges, but it’s still there.  And, I suppose it always will be.   I’ve learned to live with it, not to let it rule my thoughts like it once did.  Yes, it’s brought to the forefront from time to time, like when I hear of another child whose life was cut short by this terrible disease.  But, for the most part it sits quietly in the back of my brain. 

Every year we “celebrate” Riley’s anniversary.  We go out to the restaurant of his choice and for an activity.  This year it is Sappari and bowling.  People often don’t understand how we can celebrate such a thing.  I once felt that way too.  But, we are not celebrating that he got diabetes.  We are celebrating that it hasn’t beaten him.  We are celebrating that he is free from complications, that he’s never been hospitalized, and, basically, that he’s living and breathing.  Not just living and breathing but having a wonderful time doing it. 

I celebrate the fact that he can still participate in any activity he wants.  He is so happy.  He loves life.  He loves his video games and his big brother.  I celebrate the fact that while this disease has left scars on his body, it has not left scars on his heart or his soul.  And, if anything, this disease has made him a better person, a more compassionate person. 

And, I celebrate all that it has taught me.  I believe there is a lesson in anything if you just look for it.  I’ve learned that you can chose to be happy or you can chose to be miserable, right where you are.  The situation you are in may not be optimal.  It may not be what you always dreamed of.  But, it’s where you are.  Make the best of it.  I’ve learned not to take anything or anyone in your life for granted. Tomorrow they may not be there.    Don’t take anything for granted that you have right now, not your health, not your family, not your relationships. Six years ago I thought I could never ever be happy again.  I’ve learned not to look towards the future for my happiness, but to look right where I am right now.  

Right now is really all that I have.  And, right now I have a little boy with the most beautiful brown eyes I’ve ever seen.   He’s happy and, by God, he’s healthy.  He’s got an insulin pump tethered to his side and a huge smile on his face.   And, right now, that makes me happy.

“To get up each morning with the resolve to be happy... is to set our own conditions to the events of each day. To do this is to condition circumstances instead of being conditioned by them.” Ralph Waldo Trine