Our First Year With Diabetes

We are coming up on a year: our first year of battling an omnipresent foe. The day that forever changed my son's life was January 6, 2015.

That date will forever be remembered in our little family.  My husband and I will never forget the helplessness and fear of seeing our beloved child at the brink of death.  He had lost 12 pounds in the span of only a week.  Initially, it was thought he was suffering from strep and scarlet fever.  But he didn't improve on antibiotic therapy.  He got worse.  He had no appetite.  He only wanted to drink. His thirst became voracious.  He was urinating every few minutes.  He looked frail and gaunt.  His breathing was shallow.

I knew.  I knew what I didn't want to acknowledge.  My child...my only child...had the same disease that had stolen my sister's life 27 years before. Instinct rushed through us as we realized...we had to get help for him...quickly!

I can still envision the concerned look on his pediatrician's face as my husband carried the huddle of our son into the exam room.  My listless boy winced with a weak cry as they pricked his finger to check his blood sugar...for the very first time.  Everything seemed to be moving in slow motion as the doctor turned to me and confirmed my suspicions. The word sounded like a thud.  Diabetes.

The next couple of days were a whirlwind.  We rushed our son to University Medical Center as a direct admit.  Nurses, the pediatrician, the endocrinologist, dieticians, counselors, admission clerks...it was a constant barrage.  Each one added another layer of information for us to absorb and assimilate...as quickly as we could.  Our son's survival depended on it.

In just one day, we learned about counting carbs, insulin ratios, how to use an insulin pen, the importance of ALWAYS having his emergency Glucagon kit with us.  We were given a complimentary back pack, books and pamphlets, DVDs, a glucometer, syringes, and a Rufus bear for Jaxson to practice giving his own injections.

At the end of a very long day, my husband had to go home to get a change of clothes for us, my medications, and take care of our little dog, Ginger.  I crawled into the hospital bed with Jaxson. He was finally sleeping.  I cradled him in my arms.  And I sobbed until my tears ran dry.  I knew what this meant for him.  I had to find a way to push through the shock of this situation and dig deep.  I was aware of the strength with which I was going to have to gird myself...a strength that was going to be crucial.  The way I responded and handled this would determine Jaxson's own strength and ability to face the onslaught of a life-long battle.

It has been a year full of challenges.  I can't begin to list all the things we have learned.  We have read. We have researched. We have kept many appointments.  We have made a lot of phone calls. We have been in contact with several other families who are rowing in the same boat.  We have attended events.

It all boils down to this:  Type 1 Diabetes is an individual disease. There are similarities, but each person's experience is different.
In Jaxson's particular case, this is what we know...so far ~
He has to take insulin shots to cover elevated blood sugar levels and when he eats carbohydrates.
He has 2 different kinds of insulin...one he takes as a bolus for his blood sugar and carbs (Humalog) and a basal long-acting insulin at bedtime (Lantus),  His insulin ratios and basal rate is determined by his blood sugar and A1C number (which is checked every 3 months).
When his blood sugar drops, he has to eat something carby to level him out.
Things that effect his blood sugar include...food, drinks, activity, weather, temperature, emotions, hormones, altitude, allergies, travel, and common illnesses like colds. Having the flu or a tummy bug can throw him into diabetic ketoacidosis (DKA) in a flash. That is life-threatening.
We, as a general rule, follow a low-carb lifestyle.
He eats constantly.  My day is full of preparing low-carb fillers to tide him over between the essential carbs he eats at mealtime. I've mastered several different ways of preparing eggs.  I make snack plates full of olives, pickles, ham, turkey, chicken, cheese sticks, cucumbers, tomatoes, carrots, celery, cream cheese fat bombs, slices of different deli cheeses, blueberries, strawberries, salami, pepperoni, sausages, little smokies, peanut butter, pimiento cheese, chicken salad, tuna salad, almonds...it's endless.  Diabetes is always hungry.
We read labels on everything.
Grocery shopping takes longer.
We've learned to account for the glycemic index of foods.  For example, pizza and cereal have delayed spikes.
We avoid anything that contains sugar alcohols...which are in a lot of sugar-free foods.  Sugar alcohols make him very sick.
He can essentially eat anything...as long as we cover it with the proper amount of insulin.  He does enjoy cake and cupcakes at parties.  He eats pie and ice cream.  He still eats burgers and fries.
Every insulin correction is basically a guessing game.  Even if you go by the numbers, his blood sugar will still be a roller-coaster.  Sometimes we follow-up with chaser boluses if I don't get it right. He ingests glucose drinks, tablets, or an applesauce Gogo if I overshoot.
Jaxson wears a continuous glucose monitor (CGM) that checks his blood sugar every 5 minutes.  The sensor, which is inserted under his skin, is changed every 1-3 weeks, depending on how active he is.  I wear the receiver.  The parameters for his blood sugar are set at 90 and 200.  If he goes high or low, it alarms me and I correct him accordingly...either with insulin or food.  I hold the receiver during my sleep.
Speaking of which...diabetes NEVER sleeps.  It is 24/7/365/Forever.  Most parents of Type 1 children will tell you they rarely sleep either...at least not soundly.
We calibrate his CGM at least twice a day with regular glucometer blood checks.
We check his urine for ketones on a regular basis...just to make sure he isn't spilling any ketones.
We carry his supplies, monitor, gear, and plenty of snacks and drinks everywhere we go...everywhere!

This is Jaxson's disease.  However, we can't lose sight of the fact that he is an 8 year old boy.  I do my best to lighten his load and take as much of the burden away from him as possible. That is also a balancing act.  Even with as much as I do for him, it is imperative that he assume responsibility for his own care.  We encourage him to make good decisions with food.  I involve him in making the decision of when and how much to dose with his insulin.  He gives his own shots about half of the time.  

The only way I can describe how a Type 1 parent feels is to compare it to a terminal heartbreak.  It's the same sense of sadness and loss that leaves you with that ache in the pit of your gut.  You want so desperately to take this away from your child...but you can't.  I stay as positive and proactive as I can for Jaxson's sake.  As I mentioned earlier, I know he feeds off my attitude.  But, I'm human and I have chinks in my armour.  I do take prescription medication to help manage the stress and anxiety.  I have a lot of sadness and can't allow myself to think in terms of what our life was like before and after diabetes.  Seeing pictures of Jaxson when he was sick break my heart all over again.  My doctor says it is similar to post-traumatic stress disorder.  I'm not ashamed of it.  Whether it is situational or chemical, the medication helps me help my child.  

Our lifestyle as a family has drastically changed.  James works a lot of hours and is gone from home for long stretches so we can have good insurance coverage and be able to pay what insurance doesn't cover.  Even with having good insurance, it has been expensive. And it will continue to be so.   I rarely get any personal time and James & I find that couple time is rare for us.  It's hard to find qualified babysitters and not sure we could trust anyone enough to be able to enjoy ourselves away from him.  But we will roll with it and keep moving forward.  We have no other choice.

Just last night, we were watching a commercial for St. Jude's Children's Hospital.  Jaxson made the comment, "At least I don't have cancer."  But then, he thought about it some more and changed his mind, "You know what?  I think I would rather have cancer than diabetes.  At least with cancer, I would only have to take shots temporarily and there would be a chance for a cure. And I could eat anything I wanted.  There's no cure for diabetes."

And again, I felt my heart break for him.  He's not alone.  There are millions of children all over the world fighting the same monster.  There are millions of parents fighting along their side.  We worry about their numbers, what they are eating, if they are high or low, if they are getting sick, how to manage when we aren't with them, and how we will ever let them go to be on their own when they grow up and go out into the world.  Will we be able to give them the tools they need to be successful and stay healthy...and safe?  Will they come across people in their life that actually care even a fraction as much as we do?

Yes, this all sounds rather grim and depressing.  I'm not expressing my feelings or putting all of this out there for sympathy.  We need more awareness.  More education.  More understanding.  More funding.  More research.  We need a cure!

We have faith.  We know that God did not give Jaxson diabetes...but he made us strong enough to handle this life.  We have hope.  We constantly pray for those who are taking chances and have their nose to the grindstone for a cure.  It can happen.  We are ever so close to the elusive cure!  So we ask that you give if you can.  If you have money to donate, please consider funding JDRF or the individual doctors who are pursuing the cure.  If you have no extra money, we ask that you pray.  Not just for Jaxson...but for all of the people who live with diabetes day in and day out.

You will usually see a smile on our faces.  Even if you tell us, "Oh, my aunt had Type 2 and it was cured." or "We had to give my diabetic cat shots for diabetes." or "He will get used to it." or "Maybe if he eats right and exercises, it will go away." or "Should he be eating that?"...we will still smile.  We know everyone has good intentions.  But be prepared...Jaxson may take it as an opportunity to educate you.  He has matured and learned a lot in the past year.  

So this is our life...until there is a cure.  We will deal with it with as much courage and tenacity as we can muster.  We won't let it beat us.  We will attempt to live as normally as possible.  I will not allow diabetes to label or identify my son.  He is strong.  He is smart.  He is courageous.  He is my hero.  He is so much more than diabetes!

In spite of all his challenges, there have been triumphs!  Jaxson is thriving.  He is an 8 year old, 4'10.5", 90 pound ball of energy, curiosity, and wit!  He is intelligent and compassionate.  He loves spending time with his friends.  He loves playing video games with his Dad.  His dog, Ginger, is his constant companion.  He is artistic and creative.  Oh...and he's handsome!  He loves Math and Science and Technology.  It wouldn't surprise me one bit if he grows up and turns this negative into a big positive for others.  

The day he was diagnosed was the day he was almost taken from us; and it was the worst day of our lives.  Our community refers to it as a "diaversary".  Some throw celebrations akin to a birthday. Others consider it repulsive to do so.  How is one to properly show reverence or even possibly ignore THE day a terminal life-threatening disease is shackled to someone so young?

As for that "diaversary"...it will just be another day.  While I would prefer just to forget that day altogether, Jaxson has found it might be a good excuse to ask for a special toy, a really super duper carby dessert, a break from school work, a get-out-of-trouble free card, and permission to say a bad word once.  I just may indulge him. It will always be his day.  It is his choice.  It's the very least of which he has earned. 

As always, thank you for caring.  Your love, concern, and prayers mean everything to our family! 

Jaxson the week of diagnosis in January of 2015 and Jaxson after recovering and learning to manage Type 1 diabetes.

Shock and Awe

I remember once hearing the statement, "A parent's primary job the first 5 years of a child's life is simply to keep them alive."  How I wish there were more truth to that statement for Jaxson's sake.

I look back on that sweet time of Jaxson's beginning years often.  It was intense, but passed too quickly.  I started motherhood having absolutely no idea of how to take care of a baby.  But I quickly settled into this new-found love with the realization of knowing this is something I was born to do. Raising Jaxson was, is, and will always be, the most important thing I will ever do in my life.

There are so many fond memories of looking down at his precious face as I nursed him.  I remember singing to him and caressing the side of his face as he drifted off to sleep.  Like mothers have done through the ages, I would catch myself watching him sleep--looking for that gentle rise and fall of his chest. Even going up a size in diapers, especially when he was out of swaddlers, was a bittersweet milestone.  So many times, the passage, "we may never pass this way again", would ring in my head.  I wanted time to stand still, but it seemed to grow in momentum with each passing moment.

He rapidly achieved all the anticipated milestones; walking, talking, weaning, potty training, counting, saying his ABC's, and becoming more independent with each step.  He's always been ahead of schedule.  His height and weight were off the charts every time we saw the pediatrician.  He began talking before he turned 1 and could easily converse at the age of 18 months.  I'll never forget little Jaxson being upset because none of his friends would talk back to him.  Yes, I'm his mother and more than a bit biased.  But he truly is a special child and he has given us many reasons to brag.

The good memories are peppered with the kinds of things you would prefer to forget.  He had to have 8 caps and crowns on his teeth at the age of 23 months.  He broke his left arm when he was 2.  It never failed--we had to hold him down for every injection, immunization, and throat swab at the doctor's office.  It took more than one person to restrain this young, yet mighty, child.  James would hold his shoulders and I held his wriggling hands as the nurse would brace his legs between her thighs.  Yes, he was THAT child.  The one you heard screaming at the top of his lungs in fear and defiance.  

One particular bad memory stands out.  We were in Santa Fe at the Children's Museum when he was 5.  As he was finger painting, he turned to look at me and said, "Mom, I can't feel my legs.  I think I'm about to pass out."

He was pale and in a cold sweat.  We rushed him to the bathroom because he felt nauseated.  He struggled with dry heaves and continued to complain of not being able to feel his legs.  My husband scooped him up and we quickly got into the car with my husband holding him as I frantically tried to remember where the hospital was.  

On the way to the hospital, he begged to have something to eat.  He insisted that he was starving.  I did realize that he had not eaten well that day.  He had been so excited about all our vacation activities, we couldn't get him to finish any of his meals.  In spite of my nursing background, some kind of instinct kicked in.  My husband agreed that he needed something to eat...NOW.  

I spotted a McDonalds and quickly whipped into the vacant drive-thru line, hurriedly placing an order and almost throwing the food into the back seat.  Jaxson ravenously inhaled the food. The color began to return to this cheeks.  The nausea went away.  He said his arms and legs felt okay.  He returned to his usual self rapidly and was asking to go back to the Children's Museum.  

It seems crazy now, but my husband and I decided not to take him to the hospital.  He seemed perfectly fine.  And he was--for the time being.  We didn't know this would be a foreshadowing of things to come for him.

Because of my family's history, I have always suspected--almost known--that Jaxson would become diabetic someday.  When we returned from our Santa Fe vacation, I took him to see his pediatrician.  In spite of James's reassurance, the experience had unsettled me.   I asked his doctor if we should test him or if I needed to regularly check his urine or get a glucometer.  She casually passed it off and somehow made me feel as if I was just being overly paranoid.  She was certain he had just experienced a mild hypoglycemic attack from not eating well.  After all, he had fully recovered from a miraculous 6 piece chicken nugget happy meal.


After his 5th year, I breathed a small sigh of relief in knowing I had done what I was supposed to do.  At the very least, I had kept him alive.  I had helped him navigate infancy, toddlerhood, and guided him into thriving well in his childhood years.  Surely, the most physically intense part of raising him had passed.  After all, he was learning to do more and more on his own.  He needed me less than before, which filled me with pride and broke my heart all at the same time.

Fast forward to January 6th of his 7th year; the day of his diagnosis. You know the rest of the story.  In retrospect, I would love to go back to that place in time just after Santa Fe and ignore the doctor's lack of caution.  But, we can't go back--can we?  It is one of my biggest regrets--that I didn't listen to that little voice inside of me, telling me something was wrong with my child.  Maybe we could have caught it earlier.  Would it have made a difference for him?  It is something we will never know.

I'm thankful for my instinct and that we didn't wait too late.  I read stories of children who don't get diagnosed until after they have seized or slipped into a coma.  Thank God I knew what to look for and knew to take him in and insist for him to be tested.  

I still had the crazy urge to push away the overwhelming fears in my mind, telling myself I was imagining things or even, Heaven forbid, willing things to happen by these nagging thoughts that would not go away.  Why was he so thirsty?  Why wouldn't he eat?  Why was he going to the bathroom every few minutes?  Why did he look so pale at sometimes, then flushed at other times?  How had he lost so much weight in just a week's time?  Was I watching my child die?  It terrified me.  But I knew what his symptoms indicated.  And I finally gave in to what I KNEW was going to change the rest of our lives--his life, most of all.  And his new pediatrician confirmed our new reality.

Jaxson did have type 1 diabetes.  My son--my baby--had a life-long autoimmune endocrine disease.  There was no cure.  This was "the bad kind" of diabetes.  It can't be controlled with diet or lifestyle. He would have to check his blood sugar and inject insulin several times a day, every day, for the rest of his life--to stay alive.  I knew this disease all too well.  I had seen its ugliest side.  It killed my sister in 1987 at the age of 30.

I tell myself every day that Jaxson's journey will not be the same as my sister's.  It is a new age.  Treatment and technological advances have changed the game.  I'm so grateful for the medicines and gadgets that make managing this disease so much more efficient.  

Did you notice how I used the word 'efficient' and not 'easy'?  That's because this disease is NEVER easy.  Just when you feel half-way confident and think you have things under control, diabetes will throw you a curve-ball.  It is unpredictable, at best.  

There is another saying, "type 1 diabetes parents never sleep".  It's true.  In case you don't know why, this is the reason:  children with T1D have a tendency to go low in the night.  Moderate lows are treated with food to build the sugar levels back up in their bloodstream.   Critical lows are treated with emergency glucagon injections.  If they go too low, they could easily go into a coma--or worse--they never wake up.  

It is scary, to say the very least.  I set my alarm, depending on how he is doing, to wake up for checks every 1 or 2 hours. Once again, I silently watch my child as he sleeps.  I've returned to the days of vigilantly watching for the telltale rise and fall of his breathing.  And there's more.  I lay a hand on him as my mind repeats the addage, "Warm and dry, sugar high.  Cold and clammy, get some candy".  

More times than not, I seek reassurance via the glucometer.  I hate everything about this disease.  But most of all, I hate having to puncture my child with needles.  So many needles.  Every day.  All through the night.  Finger sticks.  Injections.  I HATE IT! I hate it so very much--for him.

He has become my hero.  The boy who used to kick, and scream, and fight has changed into a determined, compassionate young man.  Even though he can do his own checks and shots, I try to take as much of the burden away from him as I can.  After all, he's still just a kid--and no child should have to endure what T1D kids go through. Every time I stick his finger or give an injection, I say, "I'm so sorry, Boo." (that's my term of endearment for him).  He always replies, "It's okay, Mom, I can handle it." He reassures me each time that I'm not hurting him.  He hasn't resisted or complained since the day after his diagnosis.

In the midst of our challenges, I am constantly reminded to be thankful.  As I write this, we are awaiting something very special.  A device is on its way to Jaxson.  It is something that will make this disease more managable.  It will make his life easier.  

We found out this week that our insurance will cover a CGM--that's a continuous glucose monitor.  He will wear a sensor and transmitter on the the upper back of his arm that will check his blood glucose level every 5 minutes.  A receiver will display his results and show us his level and indicate if his blood sugar is trending up or down.  It will alarm us when his level rises or falls outside of his parameters, either going above 200 or below 100.  

We will even be rigging up a system to upload the data so it is remotely accessible to me and my husband.  If you see me sporting a cool Pebble watch, you won't see me checking the time or cruising the internet.  Look closely and hopefully, you will see a number somewhere between 80 and 120 with an arrow pointing to the right.

This new technology will allow us to fine-tune his treatment management.  It will give Jaxson more autonomy and independence.  He can go to a friend's house or attend something as simple as Sunday school without his backpack wearing mother being in the shadows.  Best of all, it will help us to give him the opportunity to have a healthier future.

All of us who live in the T1D world constantly hang on the promises of a "bionic pancreas" and better still, a beta cell transplant.  But in the meantime, there has been a passionately dedicated team of T1D rock stars who have vowed, "We Will Not Wait", who have created a system that gives our children control, peace of mind, and better health--and helps their parents sleep a little better at night.  It is the Nightscout team who have fostered the CGM in the Cloud movement.  A mother's heart overflows with gratitude because of these determined people who have not let government, big pharmacy, corporations, or any obstacle for that matter, stand in their way.

When my sister was diagnosed in 1967, my parents were constantly told that a cure was only 5 years away.  It turned out to be a time warp and an empty promise.  Every passing year, the cure was only 5 years away.  Each year passed, along with the hope of a cure, as they watched her body ravaged to death by this disease.

The cure is visible now.  It is within reach.  We have the technology.  We have the science.  We have the knowledge.  It WILL happen.  Jaxson will never lose hope.  Hope is his favorite word.

We need everyone's help.  If you ever need a good cause to back, please consider funding research through JDRF.  And if you already have a charity of choice or no extra funds to donate, then we ask for your prayers.  Get down, look up, and send some knee-mail to the Big Guy.  

And if you happen to spot Jaxson wearing his sensor or with his "rig", please feel free to ask him about it.  He loves to educate people about this part of his life.  Someday, I hope and pray not too far away, maybe this will all just be a bad memory for him.  It is time for a cure.

Motherhood

Being a mother is the toughest job I've ever loved.  It is the greatest calling and challenge of my life.  Holding my child in my arms is something for which I, not so patiently, waited a very long time.  I suppose that's one reason I don't take a single day of being a mother for granted.

Among my family and friends, there are many beautiful, dedicated mothers.  But I never fully understood what motherhood meant until I held Jaxson in my arms and walked side by side with him on his journey of growing up.

Motherhood is a delicate balance of give and take.  You try to cover without smothering.  You attempt to be ever-present without overshadowing. You are equipped with the kind of love that can overcome fear, misunderstanding, and resentment.  And it is unconditional.  When a woman has no voice for herself, you can guarantee it will be heard on behalf of her child.  There is a quiet, gentle strength found in the heart of a mother that could end wars and move mountains.

The desire to become a mother can be for the most selfish of reasons.  Yet when a child comes into your life, your heart is transformed into the most selfless love that exists.  You are given the gift of putting another's wants and needs ahead of your own in a way that doesn't feel like a sacrifice, but gives you an infinite amount of pleasure.

Your greatest hope is not to realize your dreams through your child, but instead to make the world better through future generations.  There is the deepest desire to spare your child any pain or harm, yet the resolve to give them the tools they need to handle any disappointment or challenge.

Becoming a mother is the greatest lesson in learning to let go. From the time each child touches your heart, you are never the same...and you are ultimately better because of the difference they make in your life.  It is an absolute dichotomy of joy and heartbreak.  The ones you love the most are the ones you have to release into the world, hoping each moment and mistake have made them the best possible individual they can be.  

You see, being a mother molds you into a vessel that is constantly breaking.  A crack here.  A ding there.  In spite of trying to remain strong, holding the contents safely; bit by bit, the pieces fall away.  Gradually, tiny rays of light begin to escape through the seams.

The greatest reward of motherhood happens when all the outer pieces of the vessel are shed.  What once were struggling beams of light shining through the cracks, it evolves into a whole source of brilliance that retains the shape of the original vessel.  You pray that during the brief amount of time the good Lord gives you to raise this child, you do your job right and well.

Happy Mother's Day to all of the wonderful mothers I call family and friends.  May the warmth and radiance of your children's light shine warmly on your faces today.

Faith Over Fear

It has been one of my personal sayings for a long time..."where there is faith there is no fear".  I've recited that mantra to myself and others on numerous occasions.  The true test of its meaning has come in attempting to live this saying as applied to my child.

When Jaxson was first diagnosed with T1D, the fear and heartbreak were almost overwhelming.  It was the closest I have ever come in my lifetime to actually questioning God.  I could not understand how or why this could happen to my child.  

Yes, it is easy for me to have no fear when it comes to matters involving myself.  But my child?  How, as a parent, can I not fear for my child?  It is all too easy to allow negative thoughts to creep into my mind about his condition and his future.  But fear has a tendency to become a festering poison.  The only antidote is faith.

I used to worry about things like answering my son's questions about sex, other kids bullying him, his first heartbreak, what his future career path will be, etc.  Those all seem so inconsequential now.  It's funny how quickly your axis can tilt and a change in perspective follows.

But you know what?  Worry is worry.  It doesn't matter how big or little the problem may be.  In every situation, we are given the choice to either have fear or to have faith.  They are both a belief in things unseen.  No matter which one you choose, they take up an equal amount of space in your consciousness.  Yet one is positive, the other negative. 

So, if I'm going to spend my time, energy, and thought process on one or the other, I'll choose faith.  It doesn't hurt to remind myself from time to time that God is much bigger than I am.  His purpose is one I am not meant to understand.  So, I'll let go of the reins and trust in Him to care for my child.  I'll do what I can to help...knowing he loves my child even more than I do.  And that is a BIG kind of love!  All that is required of me is that I have faith the size of a mustard seed.  That, I can do.

Even diabetes doesn't seem so big and bad when you look at the big picture.  After all, God put this special child in my life and entrusted me with his care.  So I should do the same in return.

Sound too simple?  It is.  Give it a try.  Because faith is always simple.  Fear is the complicated option. 

"So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen.  For the things we see now will soon be gone, but the things we cannot see will last forever."  II Corinthians 4:18

An Ounce of Prevention

Do you know the signs and symptoms of Type 1 diabetes?  

*Excessive thirst
*Frequent urination
*Bedwetting
*Changes in appetite
*Rapid weight loss
*Lethargy or marked decrease in energy
*Sweet or fruity smelling breath
*Warm, dry, flushed skin

Some of these signs mimic symptoms of common viruses such as strep or flu.  Sometimes they occur simultaneously with a virus. Recently, it has been discovered that there is a viral component to the onset of Type 1 in some children.  Of course, there is also a genetic predisposition, but in many cases, a common virus will be the catalyst that triggers Type 1.  In fact, Jaxson's onset occurred following a bout of strep that manifested in scarlet fever.  I only knew to suspect diabetes because I was aware of the obvious symptoms.

So it is quite easy, and unfortunately common, that many children get diagnosed too late.  There are many times the underlying disease is just waiting to rear its ugly head and hides in the guise of a common cold or flu.  Just a couple of weeks ago, a precious 5 year old girl named Kycee fell victim to this scenario. Her siblings had recently had the flu, so it was assumed Kycee's symptoms were due to the same.  However, she ended up going into diabetic ketoacidosis, slipping into a coma and suffering brain damage as a result of undiagnosed Type 1 diabetes.

This incredibly heartbreaking situation could be completely avoided with a simple test.  I, along with several other T1D parents, am making a call to action for pediatric physicians.  All that is required is to make it standard protocol to perform routine urinalysis on children. 

Dipstick urinalysis is an easy and inexpensive test.  Depending on which kind of test strips you use, they cost anywhere from 20 to 75 cents per dipstick, plus the nominal cost of a plastic urinalysis cup...or a Dixie cup, for goodness sake!  

And if you want to talk in a language that doctors and clinic administrators understand (no...I'm not referring to medical terminology), the procedure code 81000 (Urinalysis, by dip stick or tablet reagent for bilirubin, glucose, hemoglobin, ketones, leukocytes, nitrite, pH, protein, specific gravity, urobilinogen, any number of these constituents; non-automated, with microscopy) carries a reimbursement value of around $10 per test.  So yeah...imagine that...there's even money to be made for early detection and diagnosis!

Therefore, it should be standard protocol that any time a child presents with symptoms indicative of a common cold or virus, bedwetting, changes in appetite, frequent urination, weight loss, flushed skin or rash, or excessive thirst...A SIMPLE URINALYSIS SHOULD BE PERFORMED!  It should also be made standard protocol for this test to be done at well-check and yearly visits.  

One child spared from coma, brain damage, and/or death should definitely be worth the 20 to 75 cent cost of the test...and the time it takes to pee in a cup!


I tell people all the time ~ you have to be your own best advocate...and your child's best advocate!  Speak up for yourself and your children.  Request this test.  In most cases, you'll get a negative result for spilling glucose or ketones in the urine.  But...if that little glucose patch turns brown or the ketone patch turns maroon...it just might save your child's life!

A Million What Ifs

What if he's had this longer than we've known?
What if the doctors had tested him like I asked them to do when he was younger?
What if everyone, including myself, didn't think I was being overly paranoid about him becoming Type 1 because of witnessing my sister dying from this disease at the age of 30?
What if I had been more careful about him being around other kids with viruses?
What if he had never gotten strep?
What if we hadn't have been "overprotective" and taken him in that morning and just kept thinking it was symptoms of a virus?
What if I had met my husband and had children when I was younger?
What if I had married and had children with someone else?
What if I had undergone genetic testing?
What if I had been more careful about the things I ate when I was pregnant with him?
What if I breast fed him too long?
What if I didn't breast feed him long enough?
What if I had only fed him organic food and never taken him to McDonalds to get a happy meal...or two...or a hundred?
What if I give him too much insulin?
What if I don't give him enough insulin?
What if he is still in the "honeymoon phase" and he won't always be this easy to manage?
What if there is something I could do to prolong this "honeymoon phase"?
What if I am not feeding him the right things at the right time?  
What if I could combine traditional and holistic medicine to make a difference for him?
What if his endocrinologist found out and got mad or offended?
What if he gets low and doesn't recognize it soon enough?
What if I have to ever give him Glucagon? Should I test his blood glucose before I give the shot? Do I call 911 first? Will I mix it right?
What if my cell phone battery dies, I don't have my charger cord, and I have to call 911?
What if I happen to sleep all through the night?
What if he has a critical low in the middle of the night?
What if I don't catch it soon enough?
What if he doesn't wake up?
What if he catches a virus?
What if he starts running fever?
What if he throws up?  How quickly can I get him to the ER?
What if I live too far away from the ER?  Should we move closer to a major hospital?
What if I forget his insulin bag?
What if I drop his bag and his insulin pen breaks?
What if he has a low in public?  Will I have enough glucose tabs, juice, and snacks in his bag?
What if someone notices him injecting in a public place?
What if they say something?
What if someone says something rude or insensitive to him?
What if he resents me someday for having to always be the bad guy, constantly making him eat and take his insulin?
What if he rebels when he becomes a teenager and doesn't want to take good care of himself?
What if he grows up and decides to drink a beer?
What if he gets an insulin pump?
What if I can't figure out how to use the pump, a CGM, and connect it to the cloud?  For Pete's sake, I can't hardly connect a cable box and make it work with the TV!
What if I can't learn everything I need to know to give him every advantage I can against this disease?
What if he's active and it pulls his pump access cannula out?
What if we run out of supplies?
What if my husband gets laid off and we lose his insurance coverage?
What if our medical bills keep adding up and up and up?
What if I have to drive my old Trailblazer another 10 years?
What if our credit is effected from all our medical bills and we can't move even if we want to?
What if the daily stress of this illness takes too big a toll on all of us?
What if my fears and neuroses are cast upon my child? 
What if something happened to me?  Could he take good care of himself?
What if I had to get a job and he had to go to regular school? Would he be able to manage and would anyone ever care anywhere near as much as I do about his health?
What if he gets a mosquito bite and it gets infected?
What if he gets a foot infection?
What if he loses his eye sight?
What if he gets peripheral neuropathy?
What if he loses a limb?
What if his organs are damaged?
What if he has to go on dialysis?
What if he gets coronary artery disease?
What if, God forbid, what if I lose him before he loses me?
What if he gets his heart broken by someone who doesn't want to marry a diabetic?
What if he has children who also become Type 1?
What if the conspiracy theories are true...and big pharmacia and politicians are holding each other's hands and preventing a cure because of money and greed?

What if I could be an advocate and voice for him?
What if no one wants to listen to me?
What if I face the same prejudices and detractors I have faced in our homeschool journey and they just discredit me as some overprotective, strange, helicopter parent?
What if my lack of information, education, strength, stamina, awareness negatively effects my child?
What if I lose my composure and smack the next person who doesn't live with Type 1 that tells me he will get used to it and things will get better?
What if it is always this hard and we don't get any closer to a cure?
What if this is as good as it gets?
But what if...what if...there is a cure?
Yes...what if my son sees a cure someday?
What if he no longer has to live with this disease every moment of every day for the rest of his life?
And that is the hope to which we all cling and for which we all pray...every moment of every day!
What if...what if...what if!!!

Too Much Salt in the Potatoes

Tonight, as I was seasoning the side dishes, I caught myself mindlessly staring off into space.  I startled upon realizing that in my distracted state, I had poured way too much salt in the potatoes.  And I started to cry.

On January 6, 2015, the life my little family knew was changed forever.  Our son was diagnosed with Type 1 diabetes.  Looking back on the past month, so much of it seems unreal.  But there are rare times when I am alone--like when I'm in the kitchen preparing dinner--reality hits and overwhelms me.  My baby.  My only child.  My miracle. My precious son with the big brown eyes and dimples.  The once carefree, homeschooled boy who has his whole future ahead of him has a life-long, life-threatening illness. This is something, no matter how hard I try, I can't fix.
We have all coped relatively well, considering the situation. Jaxson has shown a remarkable amount of courage in the midst of this major adjustment.  He has surprised us with his positive attitude. We were astounded that he was willing to do his own blood glucose sticks and give his own insulin shots only 4 days after being diagnosed.  He amazes me every moment of every day. 

But he doesn't know what I know.  He doesn't fully understand the impact of this illness.  I'm pretty sure he doesn't comprehend this being something he will deal with 24/7 for the rest of his life.
He wasn't around three decades ago when I helplessly watched diabetes slowly kill my sister.  He doesn't understand the heartache I suffered watching this disease ravage her body and take her away at such a young age.  He has no idea how much his mommy hates diabetes.
Looking back on the past few weeks, it seems strange that this has actually happened.  Something inside me always had a feeling he would one day become diabetic.  I'll never know if it was paranoia or a premonition...or a curse I had brought upon myself.  Long ago after losing my sister, I uttered the careless words that if God ever wanted to make me pay for all the things I had done wrong, he would give me a child with diabetes.  
Why did I have to say those words?  Why was I so arrogant and brazen enough to challenge God himself?  I'm rational enough to know that's not what caused his diabetes.  But I'm a parent that will always question if there was something I could have done or not done to have spared my child from this fate.  I'm so very human in the worst kind of way.
Diabetes seemed like the ultimate punishment because of what I had seen my sister go through--and what I had seen my parents go through in doing everything they could to keep her alive and give her a good quality of existence.  I was there when they lost her to this disease.  I felt their pain.  It is still one of the most palpably excruciating experiences of my life.
Until now.  
Now, I put on a brave face every day.  I know my son will feed off my words, actions, and reactions.  I know his attitude will mirror my own.  So we don't talk too much about the disease. I give praise for his bravery.  I kiss his injection sites and rub them with oils at night.  I read inspirational stories to him about people who have gone on to lead exemplary, extraordinary lives in spite of having Type 1 diabetes.  I try--I try so very hard--to act like it's not a big deal. 

It's almost like having a newborn again.  His feedings are timed and his intake is carefully measured.  When he is asleep, I watch him--like when he was a baby--and look for the rise and fall of his body with the rhythm of his breathing. I feel his skin to see if he is clammy, indicating a possible low. Even in the daytime, I know he is one dose of Glucagon away from disaster.  
Everyone tells me this will soon become routine and second nature.  That doesn't give me much peace.  Because I don't want this to be our routine.  I want to make this go away.  I want to take this from my son.  I wish it was me and not him. I wish I could take his shots.  I wish I had to prick my finger instead of his.  He feels the needles in his skin.  I feel every one in my heart.  
Every person with Type 1 and every parent of a child with Type 1 will always ask the question, "Why?"  And there will never be an answer.  I can easily say, "Why not me?"  But I will never be able to say, "Why not my son?"

So, yes--in rare, quiet moments that I am alone, I feel a chink in my armor and I cry.  The frustration boils over.  I feel angry and helpless.  I want to scream.  I want to hit something.  Because damn it, this isn't fair!  This isn't fair that THIS happened to my baby.  He doesn't deserve this!
But it is what it is.  I wipe my tears away so my son won't see my weakness.  I shift gears.  I do my best to turn all the negative emotions whirling inside of me into a new direction. I know the only way I can make them benefit my son is to turn all the hatred, anger, and rage into energy to fight.  And fight I will.  
I can't take this burden away from my child.  But I can do everything in my power to be an advocate for him.  I will do my best to make people aware of the impact of Type 1 diabetes.  
No...he can't just avoid sugar. No...it will not go away with diet and exercise.  No...it's not the same as the Type 2 diabetes your grandmother or cousin got as a result of their lifestyle.  No...there is not a cure--YET.  He will have to take insulin multiple times, every day, for the rest of his life--until there is a cure.
When I'm not shopping for groceries, cooking, cleaning, doing laundry, teaching Jaxson, monitoring his blood glucose, carbs, and insulin--I will spend every other moment educating others and increasing awareness of Type 1 diabetes.  I will contact my congressmen and representatives, requesting funding and expediency in stem cell research and more efficient and accurate technology in managing the disease.  I'm going to annoy them and become a thorn in their side.  They will hear my son's story.  They will remember his name.  They will want me to go away almost as much as I want diabetes to go away.  But maybe, just maybe--it will make a difference.  It's the one thing I can do--it's about all I know to do.
I will not ask "Why" anymore.  Instead, I will hit my knees and beg God to use me.  I've always said that being Jaxson's mother is the most important thing I will ever do.  I've just been promoted.  All of a sudden, my job is much more important. This isn't about me.  It isn't just about Jaxson.  It is about every child, adult, and family that lives each and every hour of every day with Type 1 diabetes.  
I will never be too proud to ask for help.  I ask each of you to please help in any way you can.  We need for there to be more awareness.  We need funding.  We are on the verge of major breakthroughs.  
If you have extra money to give, please consider donating to Juvenile Diabetes Research Foundation (JDRF).  If you are like us and on a tight budget, then all I ask of you is that you hit your knees and join me in asking God to facilitate a cure. My boy deserves to live without the constant threat of this disease...and so does everyone else who has Type 1. 
It IS time for a cure!