Attempts at Perfection & It’s Failures

“Have no fear of perfection – you will never achieve it.” – Salvador Dali

I can’t get my head around it.  Does anyone with diabetes who is motivated in their management think they can’t achieve perfection?  Yes I said CAN’T.

As a Person With Diabetes I think that not only can I achieve challenging feats beyond my day to day life, such as ascending the Peruvian Tundra to over 15,000 ft BUT I can also achieve perfection with my diabetes.

As a PWD I know that this mindset is superfluous.  BUT, I still want to pursue it, just in case I can achieve it.  You never know, right??  Isn’t that a great goal to set and pursue. Almost like a cure, really.

BUT….yes, I said BUT…I am reminded of how the attempts of trying to be all that to my endocrine system and diabetes management isn’t that simple. Even after coming into 40 years of living with diabetes and being a Mom of a PWD for 14 years.

I am reminded on our flight to Peru, no matter how hard I attempt to make my diabetes perfect, I cannot.

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Upon take off I am aware of the potential impact the air pressure can have on my insulin pump delivery.  The rule of thumb despite there is not total clinical evidence with regards to this is to disconnect on ascension and descending. Why?  The talk of the town is that upon take off the pressure can change the delivery of insulin to cause a low blood sugar. During the flight the pressure change can create air bubbles resulting in missed insulin after landing.

I have experienced this throughout the past 14 years of travel on an insulin pump but was not aware of the ‘talk’ that circulated about this until the past few years.

So, whether clinically relevant or not, I decide to take heed to try and avoid this.

We are prepared for take off at Pearson.  Status quo.  Prior to boarding I check my Continuous Glucose Sensor.  All is good in my diabetes world.

As the plane positions itself for take off on the runway I disconnect from my site with the intention of reconnecting within a few minutes after the rapid ascension is complete.

I am excited.  I am thinking about our trip, the flight which is 21 hours with stop overs.  In my mind I am running through what we packed versus the list I print and check off.  I am nervous.  I am landing in a city that has an elevation of over 8,000 feet.  I am worried after the stories I am told of elevation sickness.

The airline steward serves our snacks.  I give it to Steve.  Packed full of gluten. I don’t need a snack anyway.  I’m not hungry.  I look at some magazines.  I do a Word Search.

Several hours pass by.  I start to feel like the Sahara desert lives in my mouth. My stomach feels like a brick made a home in it.  My chest feels heavy.

I question these feelings.  Why?  It feels like I am high.  How come?  I don’t clue in to check my sugar though.  I attribute it to the elevation, the dry air, the excitement.

The steward comes around again.  Offers snacks.  I pass mine onto Steve’s again.  Maybe if I eat and drink a ton of water I’ll feel better.  I take one of my gluten free bars out of my bag.  I bolus, I eat. I feel like crap.

Is it the flight?  The cabin pressure?  I just can’t make sense of it.  Obviously my brain cells are not firing on all cylinders.  Doesn’t being on guard all the time with managing diabetes do that to a person?

Then…I get an itch at my site.  And so I scratch. It is so itchy I must lift my shirt enough to place my hand under so I can make skin to skin contact to find satisfaction. While scratching I realize my tubing at my site is flopping back and forth….I am NOT attached to my site.

I forgot to re-connect after take off.  That was 3 hours ago.

In my effort to achieve diabetes management perfection, I fail.

Now, forgiveness is mine. I am so insulin sensitive that I only end up with a BG of 11 mmol/L.  I check for ketones as well.  They measure at only 0.3.  So…I correct for the gluten free bar and basal rates missed as well as a small amount for the trace amount of ketones.  It takes several hours to come down and even though my sugar is only 11, I feel like I’m on the edge of DKA.  I  know what it’s like, I’ve been there.

We land in Peru and I am almost in target.

After that incident I make a promise with myself.  Disconnecting on a flight to achieve perfect blood sugars is not a goal I wish to achieve.  For what I wish to achieve I fail.  I avoid a potential low but instead end up high and feeling terrible.

What’s the lesser of two evils.  I can’t answer that but I will tell you I will no longer disconnect my site.

Travelling with My Pharmacy

DBB Huchay Cusco Blog

There will a few posts/Blogs about my travels to and within Peru.

BUT..

I feel this post in particular is a huge one and is pressing upon me to prioritize even though it’s not in order.

We spent Christmas Eve in Agues Calientes. We planned to climb Machu Picchu Christmas Day.

I became very ill with a very high fever and ultimately sinus congestion, sore throat, fatigue among other things.

I am proud of the way the situation turned out as I recovered very quickly compared to most times I experience this. My husband questioned if I should take part in the venture to Machu Picchu but I insisted despite feeling down and out I would not miss such an amazing opportunity. This is a chance in a lifetime!!! And so we did.

With that being said, after we returned to Cusco a few days later we made plans to take part in a two day trek up the Andes mountains, through the Peruvian Tundra. We would then be hosted by a family overnight before descending back down the next day to another town a few hours away from our starting point.

We reach an elevation of 15,100 feet. Understanding that breathing would be a challenge at the best of times, I am overly concerned that with my congestion and swollen throat it would present greater issues.

On our way to the drop off point 1 1/2 hours away by jeep, I ask our guide to stop at a pharmacy to buy cold medication to help keep the symptoms from being too overwhelming throughout the climb.

As I walk into the pharmacy I take note this is the very first lesson I learn.  Never assume I can go away for 2 weeks and be healthy the whole time. I usually pack cold medications, gravol etc for those ‘just in case’ moments.

This is the first time I didn’t take my personal pharmacy with me. Sigh.

Our guide Henry takes me into the pharmacy in Cusco. I tell Henry in English that I need an anti-histamine/anti-inflammatory. I expect something along the lines of Advil Sinus & Cold or Buckley’s.

After the Pharmacist asks Henry a few more questions in Spanish….”Is it altitude sickness?”…”No, I had a very high fever, sore throat and sinus congestion.”…He recommends a product.

I take a ticket to the cash booth/dispensary at the front of the store. She gives me the box of medication. I am so relieved I will have the meds to help with the congestion, I don’t consider that I didn’t tell the pharmacist I have T1 diabetes OR that I took time to read the ingredients.   At this point I don’t make the connection that Dexametasona (in English “Dexamethasone”) is a steroid!!! I mean, come on, I am a Nurse. I should know the 5 R’s!!

AND I can’t buy a steroid over the counter in Canada! For good reason!

I am told to take one pill now (it is 7:30am) and again at supper. I can take it twice a day for a few days.

Within an hour I can feel the relief. I am overjoyed….until…

Fast forward to that evening and into the overnight…AND the next day…my blood sugars begin to climb…and climb…and climb.

I take insulin corrections like drinking water with no change. Not even a flicker in my Continuous Glucose monitor display. My finger pokes confirm all is not right within my diabetes world.

I reflect back on when we arrived in Cusco. Within a day I was setting temporary basal rates on my insulin pump for low blood sugars and now??? I am insulin resistant in the Andes Mountains??

I play scenarios in my mind. Is it the altitude? Is it dehydration? Is it the anaerobic feedback from the intense activity which leads us to experiencing burning leg muscles, shortness of breathe so bad our lungs are burning?

When I work out at the gym and do intense heavy weights my sugars spike. When I do hill training when I run I get the same effect. Is this the same?

At this point I haven’t made the connection yet that the cold meds contain steroids.

I do think that in part, the intensity of the climb did cause an adrenalin surge that did cause my need for more insulin….pair it with an exogenous steroid in my cold meds and here is a recipe for blood sugar disaster.

My key take away?

Bring my own cold meds and pharmacy.

If ever in an emergency that I require medications while in another country, make sure to tell them I have diabetes.

If and when I decide to ascend to 15,100 feet (or higher), take note and act that if it feels anaerobic, increase my insulin rates to accommodate to it.

No doubt it is a tough balance to achieve but I wouldn’t want to throw my hands in the air and not keep playing the game. Next time I want to improve on this experience. I accept my sugars will never be perfect in these situations especially, but, I will do my best.DBB Dexalor

Reassurances

I am dedicating this to my friend Dee who has concerns that she will develop the mindset of an ‘old Diabetic’.  This mindset consists of being scared to death that having short-term high blood sugars will cause amputation, heart disease, kidney disease and stroke.

As a result of these fears, in the past many ‘old Diabetics’ learned to avoid high blood sugars, purposely running very tight sugars on old insulin such as Lente®, Humulin® L, NPH, Humulin® N, Toronto® and Humulin® R.  As a result the experiences of multiple moderate to severe low blood sugars occurred daily and weekly.  ‘Old Diabetics’ were not taught the mindset that a severe low could kill them or cause damage as well.  I know this all to well because I am one of ‘those’ ‘old Diabetics’.  Sadly, today many still live life like this despite the new technologies and choices we have to manage our diabetes.

I am not supporting anything more than the targets set for you or the A1C you need to achieve to attain a healthy life, but I do believe achieving these go beyond numbers and are associated with the mindset of getting there.

Whether you are an ‘old Diabetic’ or not, being diagnosed and living with diabetes can be empowering AND daunting.  You change your lifestyle to live healthier, a big bonus!  After feeling good about your accomplishments you suddenly experience a setback.  So frustrating!

Do you recall this picture?  Do you see an old hag or a young woman?  Can you change your perception of what you initially see?  It is so hard!

Old hag or young woman

 

It is the same with our diabetes.  What do we see when we look at our lives with diabetes?  How do we change our perception?

Reassurances

Is this picture of a lane a challenge that may be snowy and slippery leading to the unknown, possibly a struggle to walk back up, heart beating fast, muscles burning?  Oh the worry over what could be a beautiful journey if the perception is changed.  Or do you see the pleasure of an enjoyable walk with relaxing views including a beautiful winter blue sky in the horizon?  Do you see it?

How can I reassure you that you can manage your diabetes and avoid the things you fear?  Honestly, I can’t.

What I can reassure you is; YOU are not bad.  You are you as a person first who lives with a chronic disease called diabetes.  Don’t connect the two as to who you are and your accomplishments as a person.

You are not your sugars.  You are not your diabetes.  When I hear the statement “I’ve been bad.”, the next words out of my mouth are; “Hey, do you have diabetes???”.  We both laugh and I say, “That’s why you have high and low blood sugars!, HEY, You have diabetes!!”

So how can I reassure you?  I have changed my view of being an ‘old Diabetic’.

I see the picture differently now.  Do you know why?  Living with diabetes isn’t just about me.  What I understand now is that if I choose to not ‘play the game’.  If I choose to not adhere to the rules, if I choose to keep my perspective as an ‘old Diabetic’ and not learn a new perspective, I am not the only one I am hurting.

Who saves me or helps when I decide to run too tight and too low?  Who is SO scared that they may lose me because I was afraid of a short term high or got crazy keeping my sugars too tight?  It’s not me!

Reassurances

ReassurancesI have given my heart and soul raising my 2 beautiful children into young adulthood, I want to continue doing that.  In particular to my son Kurtis as he begins his life living with diabetes independently.

I want to live life. I want grow old with Steve and be able to fully enjoy our journey together.  I don’t him to worry about me.  He has to deal with my choices I make with my diabetes now and in the future.

 

So, with this, these are my reassurances to you:

You can live with diabetes.

You will change your perspective each day on how that will happen.

Through trial and error you will find your groove.

Do not fear the unknown.  Work with what you have today and change your game plan and perspective as need be.  BUT stick to the rules.

You are not bad no matter what the numbers say, the only change you need to make when you see them is to make it better, for your sake and for those you love.

Make the Call

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Make the Call

This is the first thing I saw as I opened my eyes on June 18, 1996, the 5th Birthday of my daughter Cayla. A toilet.

As I open my eyes and look around I realize I am sitting on the floor of the bathroom. I am freezing cold. I am covered in something sticky. It is in my hair, on my face. It is all over me. My lips are numb. My left thigh aches.  I note I have on the same clothes I wore to bed.  An oversized t-shirt with the decals that celebrated the Toronto Blue Jays World Series wins in 1992 and 1993.  The t-shirt is so soaked in cold sweat it could’ve been wrung out. I am shaking profusely.

I then look over to my left and see my then husband. He is sitting on the edge of the tub. I mumble to him “I’m low.”. I see that he is holding my glucose meter.  As he shows me the face of it, evident he has just tested my sugar I notice his hand is shaking. He says “No, you’re high.” and shows me the number on the meter. I feebly argue I am definitely low despite the number on the blood glucose meter. I then say my leg is sore and ask if he gave me a needle.

He then explains to me the events that occurred that lead to this point.   As he is sound asleep in bed he feels my arm fall across his chest in bed. As he grabs my arm to remove it from his chest, he realizes that it is very cold and clammy. So cold and clammy he wonders if I am alive. After placing my arm back at my side, he nudges me and ask if I am okay. According to him the only sound out of my mouth is a moan. He continues to tell me that he then picks me up out of the bed and carries me to the kitchen where he attempts to feed me honey, as he tries to tuck the honey into the corner of my cheek to allow it slowly drain into the back of my throat, down into my stomach where it will begin to raise my sugar, I fight.

According to those who have cared for me during a severe low, I am not a nice person.  Despite my small stature I am a fighter & don’t like to cooperate.  I have been known to be holding my son Kurtis when he was a baby, refusing to give him up, insisting I need to protect him.  When I injected my insulin using vial and syringe I made a habit of leaving a new syringe and vials of insulin on the kitchen table so I didn’t forget to take my insulin.  After being carried from the bedroom, unresponsive and seated at the kitchen table, while my caregiver gets the honey out of the cupboard, I have been known to unconsciously draw up my insulin from the vials into a syringe & insist I MUST give me my insulin.  With adrenalin kicking my mind into fight mode, I have been known to hold the syringe full of insulin tightly in the air, making it challenging for the person trying to save me from my low to get close enough to treat it.  I have been known to place both feet on either side of the outside of car door to prevent my caregiver from getting me in the car to take me to the hospital.  Yes, I am one of THOSE in a severe low.

He continues to attempt to place the honey in my mouth.   According to the story I hear the # on the BG meter reads high, well above target.  As a result he re-adjusts his plan and determines that when he found me in bed I was not low but high. He injects 10 units of Humulin® R (regular) insulin in my left thigh. I don’t remember any of it.  It is 5am when he found me cold and clammy in bed, it is 10am when I wake up to see the toilet.

After I come to my senses in front of the toilet, he helps me clean up and leads me to the couch. I feel so guilty. Not because I had the low…it was considered inevitable with that type of insulin and I always tried to convince myself it wasn’t my fault. Back then the insulin I took caused me many severe lows.

I feel guilty because it is Cayla’s 5th birthday and birthdays are important. My Mom always made birthdays a very special day and I made a point of carrying that tradition on for my children.

I felt guilty because I am not able to get up and make Cayla’s morning as special as I typically did. I am not able to smile, hug her and wish her a Happy Birthday. I felt guilty because I can’t make her Birthday breakfast.

Instead, she is witness to her Father trying to bring her Mother out of severe low.

I feel guilty because I have to lay on the couch testing my sugars every few minutes to make sure I don’t bottom out from the 10 units of Humulin® R I have active in me.  I feel guilty because I am a bystander as I watch her Dad present her with her new bicycle. I feel guilty that on that day, her special day I feel like a failure as a person, a parent, as a person living with diabetes.

The learning I received from this morning is that she was more worried about me then how the morning of her 5th Birthday unfolded. She smiled as he presents her with her new bike. Then she says to her Dad, ” Daddy, I think you should’ve called for an ambulance.”

“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference….” –Reinhold Niebuhr

Meaning

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Meaning

If you didn’t live with diabetes would you be the same person you are today? What has changed about you & your family as a result? Has it been a positive change?

Without a doubt I have a passion & a purpose that I believe would have been more difficult to discover had it not been for living with ‘my’ diabetes. Although there are days I wonder how much more energy (many without diabetes say I have more then they could harness so I hesitate to wish that upon anybody! LOL) as well as how much easier & clearer my mind would be to think & process daily thoughts (that again scares people that if I thought & processed more than I do I would be a very overbearing person). Maybe I am just really good at hiding how crappy I feel somedays. BUT, in the end, I have no regrets or misgivings about being handed this lot in life. Especially now that I sit with peeps & their families that live with diabetes & appreciate that I am their coach. I love sharing my experiences of 38 years of living with diabetes, as well as 13 years as a Mom of a child with diabetes to help others.

On the other hand, I do find at this point in time challenging as a parent of a ‘child’/young adult living with diabetes. At time of diagnosis & since he became a teenager I wish it had never happened or that I could keep him at the age I was able to manage him fairly easily. I tell myself that someday I will not feel that way. He too will find his rhythm, as I did, living with T1 diabetes. I don’t think there is a parent out there that can say that their family, them or their child is better off because of having diabetes.

My Mom’s perspective? Now that she knows I take great care of my diabetes & have a career that I love as a result of it she doesn’t worry as she did years ago. With that being said, I know she still has this ‘old’ diabetes mindset that one day I will announce I have kidney failure or I’m going blind. But as each day goes by I know she sees this will not happen…not in this day in age.

Being “Normal”

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What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

An Unexpected Anniversary

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An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.