Tuesday, January 14, 2014

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. 

Thursday, September 26, 2013

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….

 

Monday, October 08, 2012

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.  

Tuesday, November 15, 2011

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?

Thursday, October 06, 2011

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

Wednesday, August 10, 2011

Reading A Cure for Emma

Today I began reading the book A Cure for Emma by Julie Colvin. For those who may not know the book “chronicles a mother’s quest to heal her child from a nearly invisible disease: type 1 diabetes”.

I purchased the book online the first day it came out. I had been following Julie’s progress on writing her book at her web page and I’m also friends with her on Facebook. I was eager to purchase the book for two reasons. One, because I was curious to see what she had to say, was curious to hear her story, her journey. We parents of kids with diabetes all have a story as to how we got here. We all have our lives before and after the disease entered our lives. I have always been interested in hearing other parent’s stories about how diabetes came to take up residence in their lives. I’ve read hundreds of stories written by other parents. And, there has not been one single story, not one, where I couldn’t feel the pain, the exact pain they felt when they learned that their child had type 1 diabetes. Whenever I read these stories it always amazes me that no matter how different we all are, no matter what our life experiences have been, we are all still, in our rawest form, the same. It’s weird and, at the same time, comforting to know that.

The second reason I bought the book was because part of the proceeds is going to support my most favorite cause in the world: finding a cure for type 1 diabetes. Not only is it going to support finding a cure, but it is going to what I believe to be the most promising research: Dr. Faustman’s research being done at Massachusetts General Hospital.

The book arrived in the mail several days ago. But, I finally got up the courage to start reading it today. Courage; why would I need courage to read a book? I read constantly. I really have no idea how many books I’ve read just this summer, but it’s a lot. I’m always excited about starting a new book. I was also excited to read Julie’s book. But, I was also scared.

You see, over the last 5 years I have honed the skill of pushing emotions down. I’ve learned to deal with the task at hand and not feel the moment. It sounds sad, really, when I say it. But, it’s true. It’s called survival. Because if I really took time to process all that type 1 diabetes throws at my child every day, I would be in the insane asylum or dead. Either way, I would be of no use to my child, who now needs me more than ever.

I knew that by reading this book I wouldn’t be able to keep those emotions at bay. And, I was afraid that once those emotions where brought to the surface again, they would overwhelm me.

I sent a little post to Julie that I would start reading the book Monday. Well, Monday came and went, as did Tuesday, and I didn’t start. I have no excuse. I just had surgery 5 days ago and have been lying around doing much of nothing. But, finally, today, I started the book.

I literally took a deep breath, opened the cover, and began to read. And, I’ve done better than I thought. I was on page 10 (“Then I scan her chest for signs of breathing, as mothers do the world over. I’ve always done this, even pre-diabetes. But, now I’m prepared at a moment’s notice for a crisis.”) before I had to blink back the tears.

I’ve made it to chapter 7 with no real break downs. I’ve stifled sobs a few times, but no actual tears have escaped yet. I’m not exaggerating when I say that most of the pages have been out of focus, blurred due to the tears in my eyes. Even the stories that seemingly don’t have anything to do with diabetes, like when she spent time with her long-lost friend who was dying of cancer, make me suppress the tears. Because I know that “seemingly” it doesn’t have to do with diabetes, but that in reality it does. In reality, once it’s in your life, everything, past, present, and future has to do with diabetes.

I know that a break down is coming. Eventually, the flood gates will open and I’ll weep for my child. My guess is it will happen tonight after Riley’s in bed. You see, I made a promise to myself that Riley would never see me cry about his diabetes. And, I’ve kept that promise for almost 6 years now. I don’t intend to go back on that promise now, or ever.

I’m going back to reading now. I just thought I’d give you guys a heads up. I’ve said countless times that this blog is my therapy. I will probably need lots of therapy after reading this book. So, there may be a blog explosion for a while. Or maybe not, maybe I’ll be OK. Actually, I know I’ll be OK. I don’t have a choice really. The question is: how much grieving will I have to do before I get back to a good place again?

Monday, July 11, 2011

A Rant and a Letter to the Lady at the Gate

Seems I only come here to rant about diabetes now. Not like that's not what I was doing almost 6 years ago when I started this blog. Back then my posts where more melancholy. I also had a few hopeful and uplifting posts. But, now, I think I just come here to complain.

My blog is my therapy. And, at this point in my diabetes journey, I need a place to vent and whine.

I feel bad about it because there is so much more I could be posting. Like: Holden's wedding pictures. Yes, that's right; Holden has been married for 2 months now. He's still in college and about to start his junior year.

Or, I could talk about the new house we bought in January. Or, the awesome grades that Riley got this year.

But, no, I'm here to vent. Complain. Scream into the wind.

Riley is very active in sports. He plays baseball, spring and fall soccer, and basketball. Right now he is playing baseball. He made the all star team and the tournament is this week. The park where he is playing has a very strict policy regarding outside food and drink. And, I understand that. It is a local park that is trying to make money so that the kids have somewhere to play. I don't mind supporting that at all (even though a bottle of water is $2).

But, they only sell sodas, water, and regular PowerAde. To say that it has been hot in NC, is and understatement. It's been in the 90s here and when you add in the humidity it feels like its 100+. So, I had been taking PowerAde Zeros for Riley. He had been putting them in his bat bag and walking through the gate and no one was the wiser. But, yesterday, in his excitement to join his team he took off with his bat bag before I could put his drink in it.

I was going to get him to come back and put the drink in the bag. But, my mom said she would just take it in. She said she would explain why he had to have it. She was sure there wouldn't be a problem. Me, I wasn't so sure. That's why I had been sneaking drinks in all week. I've had to fight that battle too often. I'm a conflict-avoider by nature. I was just trying to let my child have his drink without having to fight for it.

When my mom got to the gate the woman told her she was not allowed to bring in the drink. My mom calmly explained to her that Riley has diabetes and they did not sell any sugar-free sports drinks. The woman then said that she had diabetes too and drank regular PowerAde. Uh, lady, wrong thing to say. I very calmly told her that she is free to do what she wants but that my son would not be drinking a regular PowerAde.
Her saying this flipped a switch in Michael and he started to flip out a little bit. He started off by asking is she was Type 1 or Type 2. When she practically screamed back that she was Type 2 he went into a mini lesson on the difference between Type 1 and Type 2 diabetes. Instead of listening and trying to understand what he was saying, she said, “Well, he can just drink water.” OK, lady, mistake number two.

Her first mistake was pulling out her diabetes card. If you’re going to pull it out at least use it to let us know you get where we’re coming form. Don’t use it to judge us and put the way that you deal with your diabetes onto our son. Everyone’s diabetes is different, especially when dealing with two different types. I know a lot of people with Type 1 diabetes and they all have to do things differently. I know some kids who do drink regular sports drinks when they play games because they need the carbs to keep their sugars from going low while they are playing. That is not the case for Riley.

Her second mistake was making a call on what our child should be drinking. Yes, he could just drink water. On occasion he’s had to do just that because I have forgotten to bring him a drink. But, should he have to drink water instead of an electrolyte-replacing drink because of someone else’s ignorance? My answer to that would be a big fat NO.

Michael snatched the drink from me and proceeded to walk in with it anyway. I took it from him and told him not to make a big deal about it that I would just take it back to the car. Of course, my intention was to get Riley to go to the car, put the drink in his bag and walk back through the gate. That drink was going in one way or another. Besides, the woman was one of those people who can only see things from her perspective. There was no talking to her. She was too busy arguing and trying to be right to actually listen to what we were saying. So, trying to avoid drama I took the drink back to the car.

While I was taking the drink back to the car Michael said he turned his back to the woman and told her she just needed to stop talking to him. He said she kept talking and called him pathetic twice and then went on the say it was amazing what people would do to get out of paying $4 for a drink. It’s a good thing I didn’t hear her say that, because that’s when I would have lost it. Ignorance is one thing, but attacking someone else is a whole other ballgame.

That is when Michael turned to the woman sitting next to her and asked to speak to who was in charge. She immediately took him to a man. To the other woman’s credit, she was also trying to get the lady at the gate to understand that Riley needed that drink. When Michael found the guy in charge, my mom was already talking to him and explaining the situation.

By the time I got back into the park, the matter had been resolved and Michael was allowed to go back to the car and get the drink.

Michael did cause somewhat of a scene at the front gate. I noticed some other parents standing there with there mouths gaping open. You see, we’re normally pretty quiet. We don’t like to make waves and pretty much keep our mouths shut. But, after almost 6 years of dealing with people’s ignorance of Riley’s disease, Michael snapped. I’ve snapped on people before. But, yesterday I just didn’t have the energy. I was tired of fighting but, thankfully, Michael took up the slack for me.

While I was sitting waiting for the game to start I was thinking of some of things I wanted to tell the woman. Not ugly things, but things to try and make her understand where we were coming from.

So, I decided to write a letter. She will never see this letter, but my hope is that one day someone will read it and understand a little better what it’s like to live with Type 1 diabetes.

Dear lady at the front gate,

I wanted to explain to you why it was so important to us that we get to bring in a sugar-free sports drink for our child. I’m guessing that since you were working at the tournament that you have a least one child. Maybe as a mother you can understand. You see, my son was diagnosed with Type 1 diabetes when he was only 3 years old. He has no memory of life before having to be jabbed with needles on a daily basis. He has no idea what it’s like to just eat whatever he wants. He doesn’t even know what it’s like to play a game without sticking himself with a needle at least once, but often, several times. I don’t tell you this to gain your sympathy. Neither he, nor I, wants your sympathy. We want you to understand what it’s like. Really understand the battle he fights every single day just to stay healthy. Not to sound dramatic, but it is a battle. Everyday we fight a battle for his health. Just today I had to fight a battle with him over French fries. He loves French fries, but we fight battles with him over French fries because it runs his sugars sky-high. We fight this battle to try to avoid complications like kidney failure and blindness. He hears on an almost daily basis why he can’t have certain things that other kids take for granted. This battle is emotionally draining on all of us and some days are worse than others. I guess we are a little battle-weary. So forgive us if we don’t want to have to fight with someone just so he can have a sugar-free sport drink.

And, you were correct when you said that he could just drink water. But, why should he have to? In the heat and humidity an electrolyte replacing drink is better for him. And, frankly, that’s not your call to make. He deserves to have a sports drink like everyone else. If your park sold sugar-free sports drinks we would gladly buy one. But, they don’t. Again, not looking for sympathy, but my son will always be a little different from the other kids. No other kid on his team sticks their finger through the dugout fence to have their sugar checked. No other kid chews glucose tablets while running out to play a base while their mother silently prays that he doesn’t pass out from a low sugar. No other child on his team is hooked to a life-sustaining machine 24/7. You don’t know how happy he was when we found PowerAde Zero. He was finally able to have a sports drink instead of water. To you, it may seem insignificant. But to a little boy who is used to always being different it is like heaven.

My hope is that you will have a little more compassion for others in the future. Everyone has their own battle that they are fighting. And, a lot of us are just plain tired of fighting and would like a little understanding for a change.

Sincerely,
Riley’s mom