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.

Riley’s mom

Friday, May 13, 2011

Gotta' Look For the Blessings

Today my little man is 9 years old. Yes, 9. Can you believe it? For those who have been following along with this blog since the beginning, he was 3 when I started writing it.

It’s strange how certain events bring diabetes to the forefront. As I’ve said before, most days diabetes is way in the background. There are the “agghhhh!!!” moments from time to time; like night before last when I had to change his needle at 3:30 AM and he begged me not to as he stood there with sleep in his eyes. But, as usual, he took it all in stride. He let me change his needle and then lay down to sleep with his hips slightly askew as not to lay on the now tender spot where I had just jabbed him with a needle. While all that was not fun, it was just one of the many things that come up every day when you live with Type 1 diabetes.

But, today, the day that I celebrate bringing my child into this world, things seem a little harder, a little rawer somehow.

Don’t get me wrong, I’m not feeling like doom and gloom today. It’s a happy day. Riley is elated. He is having a birthday party with his friends after school and a few of them are sleeping over tonight. He is really excited about the sleepover.

Tomorrow we will be having a family birthday party. That is when he will find out that we will be flying to Disney World next week for his birthday. I’m so excited about that and know that he is going to be thrilled about it.

I think what it comes down to is that you can never just be with this disease. Every birthday, every Christmas, every great family vacation, diabetes is there. It has to be factored into everything. And, while most days it’s second nature to do so, some days, like today, it’s just exhausting. I know the other parents of kids with Type 1 understand what I’m saying; like I said, not trying to be doom and gloom, just venting a little.

On the way to work every morning I have prayer time. I turn off my radio and just pray. Today I did my usual prayer for safely for my family. I prayed for those who have recently lost loved ones as well as those who are sick or having surgery today. And, I prayed a special prayer thanking God for letting Riley make it to 9. Morbid? Maybe. But, I know I am blessed that he didn’t die at diagnosis. I am blessed every single morning when I tiptoe into his room and see his little chest rising. And, most of all I am blessed that God chose me to be his mom.

Tuesday, March 22, 2011

Why I Love My Alarm Clock

(**Note: This post was written a while ago and I never got around to publishing it.)

I’m not what one may call tech savvy. I do pick up on how to use new technology pretty quickly, but I’m not really into all of the latest gadgets. For example, I don’t have Internet on my phone nor do I own an ipod or mp3 player. I have recently begun to text, only because it is Holden’s chosen form of communication with me.

I wouldn’t say I’m old school. More like “not as young school”.

The thing is as much as I’m not into technological advances; I get giddy when I read about the advances in insulin pumps and CGM (Continuous Glucose Monitors). When Riley was diagnosed 5 years ago CGMs were talked about but didn’t really exist. Now, I “know” several people who use them or their child does. When CGMs first came out they seemed archaic, at best. But, recently it seems they are becoming more and more reliable.

Still, I’m apprehensive to begin using one with Riley. It’s not really the cost, although that does have to be taken into consideration. Because if I really thought that it would make a huge difference in Riley’s diabetes control, I’d get a second job to pay for it if I had to do that. With his A1C in range I’m not sure it’s really worth it right now. It took me a LONG time to become accustomed to having him hooked to a machine 24/7. It was years before I didn’t cringe at the sight of his pump tubing snaking out of the waistband of his pants. I’m not sure I am ready to hook him up to another machine. I don’t think Riley would like two pieces of hardware hanging off of him.

Also, I’ve heard the needle changes are brutal. I’m not ready to subject Riley to that if we don’t have to. My hope is that over the years they will become even more accurate and eventually be integrated into one piece of hardware (by Animas, I love them). And, they will downsize the needle a bit.

I’m not opposed to trying one out. I’m just not ready to jump on the bandwagon and buy one. To be honest, the main reason I would like to have one is for nighttime. I wish there was a way that he could only wear it at night, but I know that it takes a while to calibrate and all that, so that’s not an option right now. I have to be honest, since the story of the 13 year old girl who never woke up in the morning, the victim of dead in bed syndrome, I’ve let Riley run a little higher at night. It’s not a conscious decision, really. I’m just more wary about giving insulin if he’s high. I’ve cut back on the amount he gets which, of course, makes him run a little higher.

My husband and I get up more to check on him too. And, we’ve been sleep deprived for 5 years now. Every minute of sleep is precious to us. But, I can’t seem to go as long between checks now. It doesn’t help that a few nights ago at around 1:30 AM Riley’s sugar was 65. He drank a juice and got a basal decrease. 20 minutes later, he was 63. After another juice he was fine for the rest of the night. But, I can’t help but wonder what would have happened if we had not gotten up to check when we did. What would have happened if the alarm clock didn’t wake us and we hadn’t done the check 20 minutes later? Would his liver have helped out and kicked in some glucose? Or would his sugar have continued to plummet? Would he have become a victim of DIBS?

Speaking of technology, I am completely dependant upon my alarm clock. It doesn’t just help me get to work on time; it helps me insure my child’s safety. Most people probably buy cheap little alarm clocks. They will get the job done just fine I guess. Not me, I buy top of the line alarm clocks, the ones with all the bells and whistles. You see, when you are constantly resetting your alarm for every couple of hours every night to the week, alarm clocks don’t last as long. I found out it’s best to spend a little money on them. They will last longer.

I always have to make sure that the alarm is loud enough to wake us. You see, when the alarm goes off every couple of hours your sleep deprived brain will learn to ignore it. Right now the alarm clock is on my side of the bed. In a while, we’ll switch it to Michael’s side of the bed. Eventually, I begin to hit snooze and ignore the alarm, sometimes for more than an hour. That’s when I know it’s time for it to go to Michael’s side of the bed. And, when he starts to ignore it, we switch it again.

We recently bought a new alarm clock. This time I bought one with some sort of internal battery that keeps time even when the power is out. Before, we had an alarm clock that used a 9 volt battery so that when the power goes off it will continue to work. Well, turns out, our power went out and the 9 volt was dead and so the alarm didn’t work. The alarm has to work. ALWAYS. So, I shelled out a little more for an internal battery thingy. It helps me sleep a little better on stormy nights.

This is one of those “little things” I’ve talked about before. I’ve said it’s the needle sticks and the food restrictions that get people's attention. But, the fact of the matter is, that for those of us that live it, it’s the “little things” that weigh us down. The not-so-normal things that take the toll on our minds and the minds of our children. The “little things” that make him different. The “little things” that make me different. I mean, it’s not normal to love your alarm clock. But, I do. And, as much as I love the alarm clock, I absolutely positively love, love, love Riley’s little blue pump. I cannot imagine life without it.

As much as I don’t really get into technology, I am still very thankful for it. Who would think that an alarm clock is so important? But, it is to me.

Thursday, February 24, 2011

JDRF Vs. Faustman

About three weeks ago I came across a post by DOC founder Allison Blass. I was very interested to read it for a couple of reasons. One, it talked about losing faith in a cure for Type 1 diabetes. And, two, it was written by Allison. I don’t really know Allison, but I kind of do in a round about sort of weird internet way. Allison’s blog is one of the first blogs I started reading when our world came crashing down about 5 and ½ years ago. She also interviewed me one time for a magazine article that she wrote. And, we even got a Christmas card from her once. So, I was interested to see what she had to say on the subject. I think she did a great job writing the post. She was able to state why she felt how she did without begrudging others for feeling differently.

Prior to reading her post, I had read a little chatter on the internet about JDRF saying they were not as focused on a cure, or something to that affect; or more like they were focusing on a cure still, but also focusing on better treatments of Type 1 diabetes. I never gave it a second thought, really. It wasn’t news to me. It didn’t anger me. It didn’t shock me.

You see, when Riley was diagnosed in October of 2005, the minute we got home from the hospital I began to scour the internet for any information I could find. Inevitably I searched about a cure. Of course, JDRF was one of the first web pages to pop up. After all, JDRF is an acronym for Juvenile Diabetes Research Foundation. I read about them. I read their mission statement. I did my research on them.

I also found some articles written about research being done at Massachusetts General Hospital by Dr. Denise Faustman. I read about her research. I read about what she had done with mice. It all made sense to me. Something just clicked inside of me and said, “This woman is dedicated to finding a cure”. And, I was hooked. She hadn't even begun human clinical trials yet.  The phase I of her trials began in January of 2008.  She is now raising money to fund Phase II of the project. 

The next year, one day after Riley’s one year anniversary, I held the 1st annual Walk of Hope. Every cent raised went to Dr. Faustman’s research. I’ve held several other walks since then. All of the money went to Dr. Faustman’s research. Every walk, every fundraiser, every penny saved in Riley’s “hope jar” (featured in my blog profile pic), goes to her research. And, it always will, until the research ends.

Have I supported JDRF? I guess I have a little. I have donated to others who have walked to raise money for JDRF. Some people I know and some I don’t. Riley had a T-shirt sent to him several years ago by a little boy who he will probably never meet. I “met” his dad through his blog and donated to his walk. In turn, he sent a T-shirt to Riley. JDRF is prominently displayed on the shirt. Riley wears it with pride.

I don’t have anything against JDRF. But, and it’s just my personal opinion, they are not really focused on a cure. There, I said it. I know that infuriates some people, but that’s how I feel and I have felt that way for over 5 years now. I do believe they are very committed to finding better ways to manage diabetes. When Riley was diagnosed, continuous glucose monitors were talked about, but not on the market. I remember that even back then JDRF was throwing around an idea about a closed loop system, AKA: an artificial pancreas.

I feel the same way about it now as I did then. It’s quite simple really. That’s not a cure. I want a cure. Period. I want my little man to live his life without depending on a drug to live. And, I’m not being dramatic here. Without insulin, Riley would die. I want him to know what it’s like to eat a snack without having to jab himself with a needle first. I want him to know what it’s like to not be attached to a machine 24/7. I want him to play sports without worrying if he will go low. I want him to have a functioning pancreas again. To me, anything short of that is just a band aid. Band-aids come off. They have to be reapplied. They cover up wounds. I don’t want him to be “wounded” anymore.

I know that JDRF also funds research projects searching for a cure. (As a side note, they haven’t given one cent to Dr. Faustman.) But they put the majority of their money into projects such as the artificial pancreas. And, that right there is why I have never had a fundraiser for them. I want ALL of my money to go towards a cure.

Don’t get me wrong, I am grateful for organizations like JDRF that are trying to find better ways to manage diabetes. Like I said, when Riley was diagnosed you couldn’t even get a continuous glucose monitor. Now, many people have them. And, in the years since they came onto the market I’ve been told their accuracy has improved quite a bit. Not only that, I now bolus Riley with his pump from across the room via his blood sugar machine. It is quite wonderful.

And, all of this technology is great because it helps improve the lives of those touched by this disease. It helps control sugars, which in turn decreases complications and increases my little boy’s now shorter than average lifespan.

But, in the end, he’s still attached to his pump 24/7. He still could go into DKA from the flu. He could go into a coma from a low. And, my biggest fear, he could go to sleep tonight and not wake up in the morning. All because of Type 1 diabetes.

As parents we all want the very best for our children. We want to see them succeed. We want to see them live their dreams. Some think that better technology is the answer.

Me? I know Riley can live his dreams with or without Type 1 diabetes. But, I would rather see him do it without an insulin pump tethered to his side, without the worry, the emotions, the complications that come along with this disease.

So, I will continue to hope. I will continue to pray. And, I will continue to use that improved technology until the day that Riley does not need it anymore. And, I firmly believe, with all my heart, that Dr. Faustman’s research will lead us there.

**(I have recently began a letter writing campaign to raise money for Dr. Faustman’s research. If you would like do donate, please click here. All donations are tax deductible.)

Thursday, February 03, 2011

Home is Where the Diabetes Supplies Are

We just moved into a new house. We have been renters our whole married lives and finally made the leap into being homeowners. I love it. It's so nice to be able to paint whatever color I want and hang as many pictures as I want. There is also something special about just knowing that it's ours.

But, in the midst of all the bliss of finally having our own home, diabetes keeps poking out its ugly little head.

First, it was during the packing phase. I had so much stuff that I'm not sure why I ever had in the first place, let alone know why I kept any of it. Riley's diabetes supplies were in the living room closet. They were kept together for the most part, but over the years some things had gotten separated from the pack. I found too many meters to count. I threw out some and kept some. I had to debate on which ones to scrap. Finally I just got rid of the older ones. After all, we all know that meters are a dime a dozen. Companies are happy to give you free meters. Where they really make their money is with the strips anyway.

In that same closet I came across Riley’s bag. It is a little black nylon lunch bag. We used to keep all of his supplies in it, insulin, syringes, juice, alcohol swabs, ketone strips, glucagon. We took it wherever we went. That bag has been places. I’m not much of a purse kind of girl, but a few years into his diagnosis I broke down and started carrying one with me. It’s very practical for carrying all the needed diabetes equipment. When I finally gave in and started carrying a purse, we retired that bag. After I pulled it out of the closet I turned to throw it in the trash bag next to me. I held it there and let it hover of the bag for a second before I turned and tossed into a storage bin that would be put in the attic. I just couldn’t bare to throw it away.

When I cleaned out the kitchen cabinets, up in the far corner in the darkest recesses of one cabinet I found some more diabetes loot. I then remembered that when Riley was first diagnosed we kept his supplies in a kitchen cabinet. That was back in the injection days. Once he started on the pump there wasn't enough room there for all the supplies and most were moved to the closet. I found a few strays lancets, some insulin syringes, and several alcohol wipes.

I reached in and felt around one last time before moving on. I pulled out 3 small slips of paper. I turned them over to see what they were and stared at them for the longest time. They were prescriptions given to us when Riley was discharged from the hospital. The date in the corner was 10/7/05. Suddenly, I was taken back to that day. I stared at the neatly printed words. They were written by a woman just out of medical school who was very unsure of herself. It took her forever to write the prescriptions. And, when I took them to the pharmacy they were written for over the counter things like alcohol pads, lancets, and ketone strips. They were returned to me and for the life of me I’m not sure why I kept them.

But, there they were, in my hand, a harsh reminder of the day he was diagnosed. All of a sudden I was bombarded with images from the hospital. I slept in the bed with Riley at the hospital. I remember the first morning I woke up and saw Michael sleeping in the chair. Riley was still sound asleep beside me. I woke up, looked at him, saw the IV sticking out of his little hand, and promptly burst into tears. All I could think was “It wasn’t a dream. This is a reality. My little boy will have to deal with this disease forever. It’s never going away.”

I got up out of the bed and tried to get myself together. I tried to stop the tears before anyone saw me. At that moment, the doctor who wrote his prescriptions walked in. She began to blab on about something and when she finally looked at me she saw the tears. She looked at me and said, “Are you crying? Don’t cry, everything is going to be OK.” She looked terrified because she didn’t really know how to handle a crying mother. At the sound of her voice Riley had stirred from his sleep. He sat up in bed. I quickly turned my back toward him and faced the wall. My back was to the doctor also. I forced the tears to stop. I had made a promise to myself that Riley would never see me cry about his diabetes. And, since that day, I’ve cried a river, no an ocean, of tears. But, I haven’t broken that promise I made to myself. I remember as I was turned around she kept droning on and on about something. And, all I could think was that I wanted her to shut up and leave.

All these memories came from just a few pieces of paper, memories that had been tucked in the recesses of my mind. Ones I hoped some day I would forget, but I know now I never will.

We are finally moved into our new house now. I had packed all of Riley’s diabetes necessities up in a box. Instead of unpacking them right away I let them sit in our closet for a little while. Eventually, I got tired of digging through them to find what I needed. I began to search for the best place to put them. I finally settled on a shelf in a hall closet. There they sit: sites, strips, IV prep, cartridges, Glucagon, old meters, a few syringes. They take up a whole shelf.

Once I got them placed in the closet I took the box they were packed in and threw it down the hall. Michael came in and asked what was going on. I told him I was angry. I was angry that I had to find a place for all these things. I was angry that Riley needed these things to live, angry that he always will. Angry that every house he ever moves into will have to have a special place for all the things it takes to keep him alive.

This is the just another example of how diabetes taints every aspect of life. It even makes its mark on a new house. It makes marks on Riley’s fingers, permanent scars on his skin. And, it has made permanent marks on my heart.