Thursday, April 30, 2015

It's Not Like Much Has Changed, Right?

Q:  Now that you know they have diabetes and can manage it, nothing much has changed, right?

A:  I guess you could say nothing has really changed.  Our girls are still our little girls. They are the same little people we've always loved and cared for, but on the other hand, everything has changed.  

FREEDOM!!!  Well, it's gone.  Just gone.

Cooking is no longer simple.  Everything must be calculated for carbs.  Each ingredient in a recipe will contribute to the total carb count of any given meal.  Exhausting.  Add to that portions.  Yep, I now MEASURE every morsel of food. I can't just 'eyeball' what I put on the girls' plates.  It's my duty, my job to be sure I know what they are eating so I can provide them with the proper dose of insulin.  If they don't eat it?  I then have to determine what they CAN eat to 'make up' those carbs to prevent a low from striking.  Eating out?  A nightmare for me now.  It's not easy determining carbs for foods from a restaurant.  Sizes, breaded or not, it's. just. so. variable.  I can actually FEEL my blood pressure rise as I attempt to calculate their carbs to insulin ratio whenever we eat out.

All of life must now be calculated.

No longer can we simply 'leave the house'.  We must be sure we have our diabetic kits with us. We must check and double check that they are packed and well supplied.  If we leave without our supply bags it's not just a 'mere inconvenience', it's a potentially life threatening situation.  A severe low in either of the girls when we are caught unprepared could be disastrous.  A simple mistake of leaving their bags behind could result in a trip to the Emergency Room or worse all because we wouldn't have the life saving tools of glucogel or glycogon available.  On a much more trivial level, if we had planned to go out to eat, we can't -- not without their insulin.  Or at the very least they can't eat with the rest of us.  Think that's an easy pill to swallow for a 6 and 9 year old?  Nope, me either.  Add to this equation the fact we live in a pretty remote area.  It's not a 'quick fix' when we leave the bags behind.

Those fun family nights of 'throwing nutrition to the wind' and indulging in a nonnutritive meal of ice-cream and popcorn; simply to take a break from the every day?  Yeah, those days are limited at best.  If either of the girls' blood sugars are not under control, forget about it.  Ain't gonna happen.

Freedom is lost.

Not to mention adult time.  Techno and I can no longer leave the girls with our usual babysitters or any babysitter for that matter.  It takes a lot to manage and be comfortable managing the needs of a child with type 1 diabetes.  Let alone, TWO children with type 1 diabetes.  It's not a trivial matter.  A simple mistake can result in a life threatening situation for the girls.  Our older children, our teens, have been our primary babysitters for some time.  Can you imagine how ominous it must feel?  It's not easy to consider sticking a sharp piece of steel into a little person's body.  Even more daunting is the undeniable responsibility of figuring out carbs to insulin ratios. Then knowing if you miscalculate, you are putting your little sisters' very lives in jeopardy.  Not to mention the nerve wracking endeavor of being the watchdog for high and low blood sugars while mom and dad are out.  How to handle such a high or low.  What if one of the girls doesn't eat all the food they said they'd eat?  What then?  That's a lot to put on a teen - even very responsible teens like our big kids.  It's anxiety provoking for me and I'm an adult, their mama.  Training will be needed. For our teens. For ANYONE willing to watch our girls.  My bet?  That pool of possibilities shrunk exponentially when we received this diagnosis.

Then there's the freedom from the ever present knowledge of how diabetes impacts our lives.  Our whole family now thinks, eats, and breathes T1D.  It's ever present.  Not a day goes by that we don't think about carb to insulin ratios; highs and lows; complications of the disease.  In some sense we can't NOT think about it.  Not being diligent in our thoughts and actions concerning the care of the girls is dangerous, reckless, irresponsible.

Carefree conversations are now a luxury not the norm.  A day doesn't go by where diabetes isn't the 'focus', the prime subject matter of our interactions.

Loss?  Yes, indeed.

Freedom is gone.  On many levels.

To me?  That's a huge loss that is never ending.

Tuesday, April 28, 2015

The Storm is Real

It seems as though this Type 1 Diabetes is kicking. my. tush.

Just this weekend I experienced yet another uber emotional day.

First, at church Trinity experienced 2 lows. One at 61 - which is the lowest she's been since diagnosis. Another just a couple hours later at 70.  Granted, both were easily treated and she was able to 'practice' feeling a low. Still, it's hard to acknowledge that these dips are detrimental to her health.

Then, after lunch we were driving to take the college crew back to their dorms and Selah's CGM alarm went off.  Not even a half hour after lunch and her insulin dose, her blood sugar was soaring high.  Her monitor read 230.  Again, not good for her overall health long term.


I turned to Techno with tears threatening to fall and said, "This diabetes thing is going to give me a stroke."

He chuckled and said, "Maybe it's God's way of helping you learn to 'let go' of things."

To which I retorted, with tears closer to the brink of spilling, "Well, It's. Not. Working!"

With sympathy in his voice, he replied, "Try not to make the lesson harder."

He's right.

I am having trouble 'letting go' in this arena.

My heart aches every time I see a low or high number.

I KNOW intellectually that these ebbs and flows are going to happen. I KNOW they are out of my control.  I KNOW I am not a pancreas nor can I perform as well as the one God originally designed for our girls.


I struggle.

I WANT to do the best I can for our girls.

I KNOW I am trying to do that.


It's hard.

It hurts my heart.

It makes me cry.

Each time I give a shot of insulin and one of the girls grimaces or whimpers.  I want to cry.

Each time their blood sugars soar or plummets.  I want to cry.

Each time I have to prick their finger again -- to determine insulin doses or correction measures.  I want to cry.

Some days, I'm perfectly fine.  I go through all the motions of caring for 2 children with T1D and I 'rock it'.

Then, other days?  Yeah, not so much.

Other days, I feel like I'm in a tailspin.

Flailing out of control.

Spiraling down.


Spilling over with tears and dread.

I pray.  I ask for strength.

I KNOW my strength is not sufficient to carry me through this storm.

This storm.  It's a rough one.

It's a relentless one.

There's no break in the cloud cover.

The storm seems as though it's going to rage on forever.


God is good.

He knows my heart.

He loves my girls even more than I do.

He WILL carry us through.

He WILL calm this storm.

All I have to do is keep my eyes on Jesus.  Just as he called Peter to do as he told him to step out of the boat and into the water.......   during the storm.

It's our time to step out of the boat......

And trust Jesus in this - our storm - a storm of diabetes.

Monday, April 27, 2015

Doesn't Splenda and Sugar Cause Diabetes?

With so many articles available regarding Type 2 diabetes, it's not uncommon for misinformation to surface regarding Type 1 and what might cause or prevent it's emergence.

Q:  Did you know drinking diet pop/splenda/too much sugar/fill in whatever thing you want, causes diabetes?

A:  No, there's nothing we fed our girls or didn't feed them; nothing we did or they did that CAUSED them to develop diabetes.  For some reason they had antibodies in their blood that when triggered - often from a virus of some sort - resulted in the immune system attacking the pancreas.  Hence they now have type 1 diabetes.  Even if we had fed them raw fruits and veggies their whole life, had never allowed them to ingest sugar, nor allowed them any swigs of diet pop, they'd still.  have.  type.  1.  diabetes.  Their body still would not produce insulin and therefore their cells would not receive the glucose it needs.

Foods we eat, drinks we consume, activities in which we take part -- none of these things CAUSE type 1 diabetes.  Genetics obviously play a part, but the medical profession doesn't really know WHAT causes it to surface or why some individuals develop antibodies and others don't; they just know it's an attack on the pancreas that cannot be prevented -- for now.  Research is being done attempting to figure out if there is a way to halt the onset or at least the progression of the death of the beta cells.  It's my hope, my prayer, they will figure that out and prevent others from suffering from this silent, but potentially deadly disease.

Q: Why are you so upset? They're fine.  They look healthy.  It's not THAT bad.

A:  Yes, they do look healthy and now that they have insulin they feel healthier.  However, this invisible, silent disease is predictably unpredictable.  Just because we have insulin to give them doesn't mean they are 'out of the woods'. They are never free from this disease.

The precarious tightrope walk in which we must balance in order to keep them feeling 'fine' is challenging, at best.  Too much insulin they drop low.  Too little they soar high. Both extremes are detrimental to their health and despite following all the 'rules' of carb counting and insulin ratios these spikes and valleys 'just happen'. Stress, hormones, specific foods, the weather.... can ALL impact how their bodies respond or don't respond to the insulin we give.  Plus, how their bodies respond to various situation may vary day to day; meal to meal; even moment to moment.

Today, exercise brings their blood sugar way low. Tomorrow?  A similar activity could cause them to elevate high. Same with foods they eat. What one day causes them to have great blood sugar numbers, may cause them to drop or rise the next time they eat that very same meal.  There's no rhyme or reason with type 1 diabetes.

Not to mention human error.  Something I experienced recently and it's quite frightening.  The girls receive 2 types of insulin daily.  They get Humolog - which is a short acting insulin that they take to allow the body to utilize glucose from the foods they eat.  They also take Lantus - a long acting insulin that acts as a 'basal rate' for keeping those ebbs and flows our body naturally goes through all day and night in balance. This insulin is 'always working' in the background and lasts approximately 24 hours.  This is given only once a day. Well... a few days ago, I was distracted and talking to Techno about the girls' ratios AS I gave Selah her insulin for breakfast.  Click click, I heard as I injected the insulin.  My brain spun. "Wait, this particular pen shouldn't be 'clicking' as I inject it."  Panic. I looked at the pen -- I had given her The. Wrong. Insulin.  Now she had 3 units of Lantus on board instead of 1 for the day.  Oh my heavens. What had I done?  Fortunately, she is getting a VERY low dose of this long lasting insulin so all we had to do was lessen her totals for her short acting insulin throughout the day and all was well.  But... the risk? It was real.  It was scary.  What a fine line we walk.  What if I had accidentally given her TRINITY'S dose - which is much higher?  It's a day to day stressor.  A meal to meal risk.

You see, these kids have lost feeling good when they aren't 'sick' with a cold or the flu.  Lows can result in 'feeling bad, shaky, hungry' initially; even lower and they can produce seizures or unconsciousness, lower still and death could result.  Often such lows can occur in their sleep when they won't be able to 'feel' the low and we won't be able to 'see' the effects of it.  That's when it's the most dangerous. The most scary. That's why mom's of T1D (often called D-moms) don't get much sleep.  (More on that in another question.)  Then there's the consequences of high blood sugar levels.  Short term, it may make the girls feel bad.  Lethargic.  Too high short term could result in ketones.  Large amounts of ketones for too long could result in Diabetic Ketoacidosis and hospitalization.  Severe highs could result in brain damage.  Even death.  Long term highs on a consistent basis results in chronic damage to the blood vessels.  Such damage can cause long term complications.  Eye bleeds.  Poor circulation.  Kidney failure and the need for dialysis.  These shifts in highs and lows?  What a toll it takes on their little bodies; any day.... every day.  So, even though they look fine, they're actually fighting this disease day in and day out.

No matter how diligent we are; how well we strive to manage their blood sugars; let's face it, we are NOT a pancreas;  we cannot do what God designed the pancreas to do as well as He designed it to work; they will experience highs and lows.

All these things are losses.

Loss  of security - death is a very real danger and concern.

Loss of peace of mind as their health is MUCH MORE precarious now post diagnosis than it was prior to diagnosis.

Loss of ANY feeling of control we THOUGHT we had over their health.

Loss of knowing they are 'fine' most of the time.

Saturday, April 25, 2015


Driving to the hospital for lab work to confirm our 9 yo daughter did in fact have type 1 diabetes, I also discovered that my mom had been admitted to the hospital for pneumonia ..... 1/2 way across the country.

Initially, my mind was so consumed with the second diagnosis of type 1 diabetes in a month, that I couldn't quite wrap my mind around what all was going on with my mom.

My dad had simply said, "Your mom was admitted to the hospital yesterday with pneumonia."

I knew it wan't 'good', but I also convinced myself she'd be fine now that she was getting treated for the infection causing her distress.

When I finally spoke to my mom, I discovered she was also having serious heart issues as a result of the medications they were using to treat the pneumonia.

My mind was whirling. What can I do? What should I do?

My girls were still precariously walking the tight rope of getting their blood sugars under control.  I was still adapting to the devastating news of not one but two of our six children having a life long, chronic, incurable, and potentially deadly disease.

Fortunately, mom started showing improvement. They managed to get her heart rate more controlled. She was feeling a bit better.

Then.... complications.

Her white blood cell count kept rising.  Her lungs were not clearing up.  She couldn't breath.

Stronger medications were needed.  More time in the hospital.

What was originally 10 days turned in to more as they changed her medications.

I began to wonder if I should fly to Ohio to see her.  To talk to the doctors.  To sit vigilantly at her bedside.

But... what about the girls?

I couldn't leave them!

But.... I couldn't take them across the country, by myself, and leave Techno - my diabetes expert - behind either.


No easy answer.

For, now?  I'm choosing to stay home; to care for the girls; to call daily to check on my mom; to talk to the medical staff in charge of her care.

I'll continue to monitor her progress.  My decision will change based on how she's doing.

I'll pray and ask God for wisdom, guidance. To know the RIGHT decision at the RIGHT time.

This position is hard.

Primary caregiver - mommy - to our 2 little girls so newly diagnosed with type 1 diabetes; clinging to me whenever a 'free moment' opens; wanting me for all their care; relying on my watchful eye as we go through our days.....
the only daughter, youngest child of my own mommy who is thousands of miles away; sitting in a hospital bed; not understanding all the doctor's are saying; struggling to breath; fearful from the numerous tests being performed; relying on ME to decipher the news they share.

So.... I wait.

I pray.

I rely on God to show me the right path.

The right time.

Knowing that wherever I am, my girls and my mom are in HIS care first and foremost.  I'm just His messenger; His hands.

That's comforting.


GOD...... Is.....


Friday, April 24, 2015

What's the Big Deal?

Many, if not most, people don't realize the gravity of Type 1 Diabetes.  In that vain, we've heard things like:

Q:  What's the big deal?  I know someone with diabetes and their fine.

A:  Yes, most individuals with T1D live very full lives filled with joy and potential.  There's not much a kiddo with this disease can't do that any other child can do.  However, if you aren't living and breathing the 'behind the scenes' stuff we go through day in/day out, you probably won't realize they aren't 'fine' all the time.  Our little girls now have to begin to 'feel' when they are low or high -- it's a life saving tactic they need to develop.  Can you imagine, sitting at a desk next to your little girl who's been working happily on her schoolwork.  You look over after spending a little time working with one of your other children to discover she has tears streaming down her face.  She can't tell you why. She's. Just. Crying.  This disease has cost her the ability to control her very emotions. Severe lows and highs can even render her unable to think rationally. You suspect low blood sugar.  Guess what?  You now have to CONFIRM your suspicion with yet another finger stick.  Sure enough.  Low.  You give her a small juice. Then you wait. Will it bring the blood sugar up?  Will you need to give more glucose?  Finally, the blood sugar is on the rise.  All is well, right?  No, that 'yucky feeling' she's been battling while her sugar was low- that caused her to cry - doesn't just magically 'go away' when her blood sugar gets back in 'normal ranges'.  Now - you wait; you watch; until her body recovers; her mind clears; and she's capable of going back to her school work.   How long?  15, 30, 60 minutes?  It varies by child.  It varies by situation.  They are the only ones who can KNOW when they feel 'back to normal' again.  So, yes, they may be 'fine' some of the time, but.... often.... they may not be.  It's undefinable. They SEEM healthy, happy, thriving even, yet.... there's this deep, deep, loss and grief that isn't visible on the outside.

Q: or Comment:  At least you already know what to do since Techno is a T1D and you have been doing this with Selah for a while.

A:  100% true!  We DO know WHAT to do.  Techno has been carb counting and figuring insulin ratios for some time.  Me?  Not so much.  Can and has he taught me?  You bet. But... do you know how overwhelming it is to actually figure out the carbs in everything you put in your mouth?  It's exhausting.

What once took me 5 minutes when it came to preparing breakfast, now takes 20 -- and that doesn't count any cooking or plating of food time.  That's just checking blood sugars, calculating carbs for what they are going to eat, keeping their 'kits' separate, remembering whose numbers were whose, logging the blood sugar numbers/the carb ratios/the foods to be eaten, who needs what amount of insulin, then NOT mixing them up when administering.  The first few days after diagnosis, I cried when preparing meals.

Plus there's the 'art' of managing diabetes.  Once you take a blood sugar level you have to decide, "Is it low enough to wait to give insulin?  Do I give it before they eat, right as they start to eat, or maybe a little after they start to eat?"  Or "Do I give a little more insulin b/c I know she really likes Doritos and will probably want more?"  Then there's the dilemma when you've dosed for a certain amount of carbs and.... imagine it.... the 6 yo decides she doesn't like spaghetti today and barely touches her food.  Or worse, begins throwing up.  WHAT?  Wait?  I just dosed you for a million carbs and you ate 5?  Panic ensues.  That life saving insulin I just gave her to keep her healthy, to allow her body to utilize the glucose in her food is now life THREATENING.  There's not enough glucose going into her little body to be used by all that insulin and the blood sugar is sure. to. plummet.  What a nightmare.  So, yes, we 'know what to do', but it's not that simple.

So many variables.

So much to consider.

Multiplied by 2.

Each day.

Each meal.

What was lost?

That feeling of being 'fine' most of the time.  Of not having control of your emotions, even your thought processes when blood sugars drop or rise outside of 'normal' ranges.

Loss of time spent recovering from lows and  highs as the body readjusts to the blood sugar getting back on track.

Loss of ease when cooking and preparing meals not to mention the added stress of constantly thinking of the foods our girls might eat, actually eat, or don't eat.

Wednesday, April 22, 2015

Can't You Just Change Their Diet?

To kick off the 'what's been lost' series of Q&A, I thought covering a bit of 'WHAT Type 1 Diabetes actually IS' might be helpful.  It falls in line with one of the first questions we received upon getting  this relentless diagnosis.

Q:  "Can't you just change their diet and have them exercise more?"  Along those lines, we also heard, "They're so thin, they don't 'LOOK' diabetic."

A:  Type 1 diabetes is a very different beast than type 2 diabetes.
Type 2 CAN be improved, even cured by a change in diet and exercise.  Type 2 diabetes is a situation in which an individual's body has become resistant to the insulin their body produces. They still produce insulin but due to their diet, weight and/or many other circumstances their cells are resistant to it.

In type 1 diabetes, the pancreas has been attacked by its own immune system -- it is an auto immune disease.  The body no longer produces the beta cells responsible for MAKING insulin.  Hence, the body no longer makes insulin.  Without insulin - the key - the cells cannot receive the glucose they so desperately need to function. They can't get energy.  Glucose IS energy for our bodies.  When the cells don't get enough energy, the individual feels tired, run down; they look and feel sickly.  When the cells can't get energy, they start breaking down fat to use as energy. When this fat is broken down it produces ketones in the system. This will cause the individual to urinate often in an attempt to eliminate those ketones. This will then cause them to be excessively thirsty.  However, the ketones never get flushed b/c the body just keeps making more.  The cycle continues.  Unexplained weight loss ensues.  Why?  All because there is no insulin for the body to use.  The sugar in the bloodstream can't get out to the cells.   It's stuck in the blood vessels.  The blood sugar levels rise.  No change in diet will alter this phenomenon.

Our girls eat a pretty healthy, varied diet. Yet, they still have the diagnosis of Type 1 Diabetes (T1D) because their own immune system attacked their pancreases and they no. longer. produce. insulin.

Q:  Aren't there pills they can take so they don't need shots?

A:  Again, this is related to type 2 vs. type 1.

Type 2 diabetes can be managed with oral medication.  I believe that's the most common way to treat type 2, along with improved diet, exercise, and weight loss.

Type 1, on the other hand, requires insulin shots!  The insulin must be injected for it to work properly. Remember, with T1D, the body no longer makes insulin, so.... we have to give it artificial insulin.  Otherwise, those hungry cells cannot open up to receive the glucose.  Insulin is the key.  It opens the door so the glucose can rush in and feed those cells.  It's like fuel for the body just as gas is fuel for a car.  You have to get the insulin into the cells.  Unfortunately, the only way to accomplish this is shots --- with needles --- 4-6 times a day.  So, our little girls now have to endure those shots of insulin EVERY SINGLE DAY!

Imagine it, you have to go to the doctor daily to get a flu shot or other vaccination. Fun?  I don't think so. Now multiply that by 4 more times each day. That's what our girls have to do - just. to. survive! 

Plus, we have to check their blood glucose levels 5-8 times each day, to be sure we're giving the appropriate amounts of insulin.  Not too much,  not too little.  (More on that in a different question.)  Eventually we hope to get them on an insulin pump that will eliminate quite so many shots, but it's still an artificial means of delivering insulin that their body doesn't make. These pumps are often referred to as a 'bionic pancreas'. An external one, but it does attempt to act as a pancreas for the T1D.


Yes, I see these things as a loss.

Loss of a healthy pancreas.

Loss of a fully working body.

Loss of not feeling pain - e-v-e-r-y.  s-i-n-g-l-e.  d-a-y!  Just to survive.

When I hear one of my little girls gasp, "ouch", as she picks something up because her fingers are sore from so many pokes; when she whimpers as I inject insulin into her little body because it burns; I.  Feel.  a.  Loss!  I'm willing to bet they feel a loss too.

Plus, this is just the beginning.  This will be there every day for the REST of their lives.

Monday, April 20, 2015

Nothing Lost?

As we received the diagnosis of type 1 diabetes for Trinity, just 3 weeks after the same diagnosis for Selah, I sent a text to many friends and family asking for prayers.  One good friend encouraged me as I struggled with the 'if only' head messages I was sending myself. She also sent a message that said, "All gained, nothing lost."

Nothing lost?  What could she mean 'nothing lost'?  SO MUCH was lost that very instant.  We had been dealing with this silent, invisible, yet deadly disease with Selah for the last 3 weeks -- I knew the loss; FELT the loss immensely.  I then wrote back, "Well, some lost, but yes, time to move forward."

As my friend, she wanted to know what I felt was lost.  In her mind she couldn't make the word 'loss' fit the situation in which our family found itself.  The girls were now going to be able to heal. Become healthier again. We were now going to be able to give them life sustaining insulin.  To her, that was all GOOD.  A gain.  She pressed, "Not to challenge, but for my own enlightenment, what do you feel is lost?  Temporarily or permanently?"

This exchange led to a long, non-exhaustive letter outlining much of what I - we - feel has been lost as a result of this diagnosis.  Don't get me wrong, we acknowledge that we have much to celebrate.  Our girls VERY lives were saved by discovering the diagnosis, yet.... that same discovery ripped much FROM their lives as well.

Such a mixed bag.

Over the next days and weeks, my goal is to share what I wrote in that letter for others to see; to learn what this diagnosis 'looks like' from the inside.  With the help of my friend, I will do a 'question and answer' as well as 'what not to say', here on my blog discussing much of the loss that's felt when a parent hears the words, "Your child has type 1 diabetes."  As she explained, others - those not dealing with this disease in their lives - may have a hard time resonating with the words 'loss' and 'grief'. To them, our girls look healthy; they play; there's no 'visible' sign of disease.  So the sadness we feel, may not make sense.  They may question our grief.

In attempting to understand and even validate my own feelings, I decided to post the question on the diabetes support boards asking other families what they felt was lost through this disease.

The coming posts will attempt to address the many 'losses' felt.

If you have questions you'd like answered regarding type 1 diabetes and it's effects on the children diagnosed and the families caring for them, please leave a comment and I'll do my very best to include your questions in my posts.

Awareness is key.

This disease needs others to KNOW the risks, the dangers.  Through awareness, funds can be raised to help with researching a cure.

My prayer, my hope, is that through my posts, others will understand, a little bit, how this disease impacts families.

It's not simple.

It's not fun.

It's painful.

It's hard.

It..... is..... a...... loss!

Friday, April 17, 2015

Grief Bombs

It's funny how this new diagnosis for our girls has impacted my emotional state.

Last week I felt like I was 'dealing' pretty well.

I had had several good days all in a row.

Then.... it hit.

For some reason, the emotions just came rushing back.

Being part of 'support groups' with other families of children with diabetes is immensely helpful, but it's also quite depressing.

Days when I'm feeling 'on top of the world' and like 'we've got this', come crashing down when I see a post of a traumatic experience another family is going through.

The emotions - the tears - come rushing back.

The knowledge that 'one day that could be us,' hits hard.

It's ironic, the things that build up and support you also cause your knees to crumble and knock you down.

Just recently I read a headline of one of longest surviving individuals with Type 1 Diabetes in history. She lives in Australia and she just celebrated her 80th birthday.

That news, though positive, exciting even for this women, brought me to tears.

I'll be honest, I hadn't even thought about the fact that my little girls' life expectancies were drastically reduced the day they were diagnosed as children with type 1 diabetes.

Talk about sobering.

Don't get me wrong, I know that all of our days are numbered.  Any one of us could get eaten by a mountain lion tomorrow ;-), but... yet... the acceptance that THIS DISEASE has taken days.... years.... off of the girls' little lives, was yet another blow to the chest.

Another reality of our new life.  Our new adventure.

I'm learning that grief isn't as 'textbook' in it's emergence as I'd like.  It has this tendency to throw what I'm calling 'grief bombs' my way.

Just when I think it's smooth sailing - a bomb surfaces.

It explodes causing a ripple effect in my mood; my emotions; my thoughts.

I'm learning to be alert for such bombs ---- surprises.

I'm aware they can appear out of nowhere.  Anytime.

I'm learning to absorb the shock these bombs cause and then move on with my day in a more 'normal' fashion.

These sticks of dynamite don't have to pull me into a pit of despair.

I can take the blow; pray; deal with the feelings; and move on - right then, right there....

... Or at least in close proximity to right then, right there.

Tuesday, April 14, 2015

Bad Mommy Award Goes To.........?

When you receive news like we have in the last month, it's easy to start doubting your skills as a competent mama.

Not in terms of the day to day caring of our children.  I'm quite adept at making their meals, keeping them clothed, providing a safe home for them to live, tending to their scraped knees.

Yet, with the onset of diabetes, it's been easy to kick myself and say, "Why didn't I realize JUST how thin she had become?"  "Why didn't I pay attention to how pale her skin looked?"  "Why didn't I take her to the doctor when she didn't kick the '24 hour flu' in 24 hours like the rest of the crew?  I allowed hers to go on for 48 hour. What was I thinking?"  "Surely I'm the top candidate for the Worst Mom of the Year award."

These thoughts coursed through my mind as we drove to the hospital on Saturday to get Trinity's blood work done to confirm the diabetes diagnosis.

As we drove I texted friends and family asking for prayers.  I'm fully aware of how healing and uplifting prayer can be.  I wasn't going to miss an ounce of that power.

One friend was so encouraging and supportive.  I'd have to say she's one of the most encouraging individuals I know.

She offered her prayers and condolences for the situation in which we find ourselves, but beyond that she helped to highlight the positives in our quick action in getting diagnoses for both our girls.

As I sat abusing myself mentally for 'not acting sooner' when I noticed how thin Trinity was becoming, she reminded me that we DID in fact catch this early. Neither of the girls needed to be hospitalized.  Neither of the girls were in diabetic ketoacidosis.  Both girls were able to flush ketones from their system within a day of diagnosis.  Both girls felt physically better after just 1 insulin shot.

In fact, she reminded me to 'break out that mama bear' and get angry at this disease.

To FIGHT this beast.

It was ironic, since Selah's diagnosis, I've been so sad that I've not really gotten mad.  My anger at this horrible disease has not flared.

Her words woke up that part of my mommy's heart that fiercely wants to protect my little babies.  Not that I haven't been - I have.  As soon as we learned of the girls' conditions, I've been able to switch right into 'care mode' and do all that needs to be done to manage their new needs in addition to those they've always had as children.

But, the grief, the sadness was and is deep.  Due to that, I hadn't yet gotten really....  MAD!!

Upset?  Yes.

Scared?  Yes.

Mad?  At this disease that has stolen so much from our little girls?  Not so much.

I think I was simply in survival mode.  Barely getting by emotionally with all this new and overwhelming information that had been thrust upon us.  I was letting the disease win in a way.  At least from an emotional standpoint.

Now?  With a second diagnosis not even a month later?

I.       Was.       Numb!

This friend tried to shake me up and get me fighting.  I'm so appreciative of that fact.

We DID get them diagnosed early.

We THWARTED this disease that was eating away at our precious angels; that was literally sucking the life out of them; that was making them sick and pale.

We could now give them life saving insulin.  We could help their bodies use the fuel that is so easily present in their bloodstream but that was inaccessible without that key -- insulin -- to open the doors.

So, I don't get that 'Bad Mommy Award' after all!

Not for this.

We.  Did.  Good!

We caught this beast and now...... we WILL fight!

Monday, April 13, 2015

More Unsettling News

In a strange, sort of tragic turn of events, we found ourselves driving to the hospital - yet again - this past Saturday. This time for our 9 year old Trinity.

Over the last month she's lost a bit of weight; had a very difficult time getting over the 'short' stomach flu that hit our family; and in general was looking pale, sickly, and tired lately.

Call it mommy's intuition or whatever you like.  For some reason I just felt we needed to have a peek at her blood glucose numbers.  I asked Techno to check her levels since her pale, drawn look reminded me so much of how Selah looked when she was initially diagnosed with Type 1 Diabetes.

After sleeping Friday night to Saturday, we took her blood sugar so that we'd get a good fasting result.


Humph. Didn't fully expect that.  A high number - especially after fasting for 10-12 hours.

Checking ketones demonstrated large amounts in her urine.

Deja Vu!  Hadn't we just went down this road?

A call to the endocrinologist and off we went to the hospital in Fort Collins for blood work to confirm our fears.

Yes, as you might have guessed, we now have two children in our home with type 1 diabetes.

I couldn't make this stuff up.

Yes, just 3 weeks after receiving the devastating news that Selah has type 1 diabetes, we received the unwelcome news that Trinity ALSO has type 1 diabetes.


Numb?  You bet.

I guess in some ways this news was a little easier to hear because we were already grieving the diagnosis for Selah and because we were already in the throws of this new lifestyle of finger pricks, carb counting, insulin dosing, and glucose monitoring.

Yet, now we have to grieve this loss for Trinity as well as Selah.

Heavy stuff.

I'm leaning on God and our family and friends as we travel this road.

It's not easy.

It's not fun.

I'm starting to get a bit angry about it all.

Angry at this horrendous disease.

Angry at the enemy who wants us to suffer.

We'll continue to fight this disease.  To fight for our little girls.  To fight for their very lives.

One day at a time.

One finger prick at a time.

One blood sugar reading at a time.

One insulin dose....

.... at a time.

Friday, April 10, 2015

Different Ways of Coping

As we've traversed these new waters, I've come to realize we all cope differently.

Selah has just 'gone with the flow' and adapted to her new way of life.  Not saying she's not been sad or struggled, but... in general..... 'it is, what it is' with her.  At 6 she already understands that foods with protein have no carbs, therefore, cheese and nuts are 'free foods' for all intents and purposes. When it's time for a snack, just ask for cheese.  LOL!

Techno has adapted by talking to his own endocrinologist and has armed himself with knowledge of all the technology at our fingertips to make this journey easier.  Less traumatic all around.

Our older kids have delved into helping out with her care - learning what her target ranges are, being part of her sugar checks, learning what type 1 diabetes actually is and how to counter what well meaning people may say that just isn't quite right.

I on the other hand, just needed to cry.  To mourn.  To feel all these raw and broken emotions.  And.... to write about it, here.

It felt like I might never stop crying.

Like my emotional state was going to be ragged forever.

Chafe, fragmented, and tattered was going to be my countenance.

But, it wasn't.

I didn't stay there - completely.

However, I realized that part of what I needed was for people to just let me feel sad.

Let me cry.

Let me recoil.

Let me lash out in my unbridled fretfulness.

Allow me to feel the emotions that were coming at me. Through me.

For people not to tell me 'it would be ok'.

Not to hear, 'it could be worse.'

I didn't want to feel I was WRONG because I was sad.  Shattered.  Raw.

I needed ears to listen.

A shoulder to cry on.

Someone saying, "It's ok.  This is normal.  You CAN cry.  Yell.  Sleep.  Whatever it takes to make it through the storm."

I wanted people to reach out and tell us they loved us.  They were praying for us.

That helped.

It healed.

I guess, for me, I just needed..... time.

Time to feel the emotions.

Time to acknowledge the reality of this life-long diagnosis.

Time to emerge out of the visceral state in which I began.

Time to be ready to face others who were concerned for Selah - to be able to talk about the situation.

Time..... to...... breath.






Thursday, April 9, 2015

Finding Joy in the Hard Times

Well, so much for feeling like I was coming out of my emotional pit.

All those tears? That feeling of being compressed and pushed down?

Yeah, there back.

I woke up fine. Felt good.  Even chipper, I'd dare say.

But.... the day continued.

By mid-morning, I was reading Facebook and listening to the kiddos play.  I skimmed over a few posts from the new groups I'm following on 'parent's of children with type 1 diabetes.'

That's when it started coming back.

The sadness.

The tears.

The feeling of being swallowed in that emotional pit, again.

I tried to blame the groups - the posts I was reading.

Techno reminded me that I needed to feel these feelings. I needed to deal with my sadness in my own way.

Yes, hearing other moms' struggles; hearing of situations we've not yet faced; reading of conflicts brought on BY diabetes; all that MAY have played a part in triggering the tears again, but.... in reality.... it was just life.

It was grief.

Grief doesn't just one day 'up and leave'.  It's funny that way - it lingers, holds on.

It's there.  In the background.  In the foreground.  In the middle ground.

It's.     All.     Around.

I went to the store for groceries and the kids Easter stuff.

I stood in the 'candy aisle' looking at all the Easter candy options.

I wanted to cry.

I'm pretty sure if no one else had been standing in that aisle, I would have broken down in tears.

I picked up bag after bag of candy. Checking the labels.  Looking at the amount of carbs per serving.  Placing MOST bags back on the shelves with a sigh.

The sadness was deep.

Such a simple task - picking out candy - had become a monumental feat, it seemed.

But... in the end... I discovered that one of her favorite candies - Smarties - only had 6 carbs for a WHOLE roll.


That's HUGE!

She could have a whole tube of one of her favorite treats.

So.... even though it was stressful. Tearful.  I learned something good. Something fun for Selah.

I continue to be sad.  To grieve.

However, I will also continue to force myself to see the good.  To feel the joy.

As someone mentioned; yes, this is a hard diagnosis.  A terrible life altering disease. But.... we still have Selah with us.  Her life continues.  There's joy in that alone.

Yes, the sadness will hit.  Yes, the tears may fall.  Yet, joy will permeate if I allow it.  If I focus on it.

Selah can still have a wonderful life ahead of her.

A life filled with purpose.

A life full of joy.

Wednesday, April 8, 2015

Our Second Class

Attending diabetes education classes in Denver is now part of our 'routine', so to speak.

Being there.  Talking.  Listening.  It was another step in the healing and learning process.

I realized while we were there that Selah is ONE TOUGH cookie. I also realized I'm getting stronger.  Techno is more open about his own situation.  Our other children are adapting well.

We will all weather this storm just fine.

Not saying there won't be some rough waters, but.... our ship is going to stay afloat.

Our class was a group setting.

Several kids around Selah's age.  A Jr High aged boy.  A senior in high school getting ready to head off to college in August.  And.... a little 18 month old toddler.

It was amazing to see the resiliency in all these kids. But... especially in that little bitty one.

It allowed me to appreciate the fact that Selah being 6 at diagnosis was actually a blessing.

She can verbalize how she feels; what she wants to eat; when she's hungry. 
All those things that we sorta take for granted.  
That little guy?  Often all he could do was whine or cry to get his point across.

He experienced a low blood sugar while we were there.  His parents, like us, just 'went into motion'. Finger pricked; blood sugar checked; juice grabbed; he drank.  Wait 10 minutes, start over.  Fortunately that was all it took and his sugars were back in range.

Still - how frightening for them. For him.

This is reality for all of us now.

These steps will be part of our everyday life.

Sitting there, with other parents of newly diagnosed children with diabetes, I saw many of the same emotions I've been going through.




Lack of control.




They all felt it too.  In varying degrees.  At different times.

In each situation, it was amazing to see how the kiddos -- the ones WITH the actual diagnosis -- seemed to be adapting and accepting so much easier than the parents.  Some more so than others, but by far, it seemed the parents - usually mama - was the one struggling. Fearing.  Fretting.

I'm not sure why, but this class helped me feel stronger.  More confident.  More at ease with our 'new life'.

I talked openly about what all we've been dealing with. Feeling.  The trials and triumphs we've experienced.

I saw fear in the eyes of those other mother's.  I saw the raw emotions on the verge of erupting.  I felt their sadness for their children.  I heard the uncertainty in their voices.

I saw me.... in them.

It helped.  It strengthened.  It healed.

I'm not saying I am 'over' all the emotional turmoil that this diagnosis has brought into our lives, but.... I can honestly say I feel capable of coping now.  To get stronger.  To move forward.

I no longer cry every time I make a pot of coffee.  :-)  That's progress, right?

I can even giggle at the fact that I DID cry several mornings while making coffee.  As if the coffee pot had ANYTHING to do with this situation.

Grief is a funny thing.

I feel so blessed we have so many resources available to us.  Not only in terms of dealing with diabetes, but also dealing with the 'stuff' that comes along with it.  The emotions; the crying; the anger; the fear; the acceptance.

I pray that I can be of help to another parent going through a similar situation.  Maybe now.  Maybe a family in our class.  Maybe years from now.  A new mom feeling the same raw, broken, irrational emotions I felt those first days, weeks.

I know God has a plan.  I'm looking forward to seeing that plan unfold before me.  I'm reveling in HOW God will use me.  Use Selah.  Use our family.  To help others.

Tuesday, April 7, 2015

Life Goes On

Isn't it interesting how life just moves along even when something monumental happens to us?

Yep, life doesn't seem to get the memo when we'd like it to just 'slow down' or even stop, because of circumstances we are going through. Circumstances out of our control.

That's what I'm learning as we adapt to our new 'norm' of parents of a diabetic child.

Church activities, grocery shopping, orthodontist appointments, work, school....

They.... all.... just... kept.... going.

Last week Elijah got braces put on his lower teeth.

Not exactly a fun day, but exciting - sorta.

Since we were out and it was lunch time, we grabbed lunch out as a treat.

He picked Q-doba.

A nice time of chatting and munching.

It's always nice to spend a little one-on-one time with each kiddo.

We've found dentist, doctor, and orthodontist appointments a perfect built in opportunity to do this.

I enjoyed hearing about Elijah's interests as we ate.


Books. Particularly Lemony Snickets.


I listened to his feelings of Jacob being off at college and the joy he gets when Jacob is home for a spell.

It was nice.

Just the two of us.

Just normal life.

Life does go on.

That's good.

No, it's GREAT!

It was wonderful to have a break from counting, calculating, thinking about diabetes.

I knew Selah was in good hands. Safe at home with daddy and her sisters.  Her needs would be tended to.

For those couple of  hours, I just sat.  Listening.  Talking.  Enjoying time with our son.

Monday, April 6, 2015

Smiles and Release

Going to church on a couple Sundays ago was like salve to my soul.

In more ways than one.

Hearing God's Word; teaching a Sunday School lesson; praying with other believers - all those things fed my soul with the life-giving promises of God.

However, just. being. out.....

                Being with other people.....
                            Watching Selah be..... Selah.....

                                             Was healing to my heart too.

I smiled.

I laughed.

I talked about Selah's condition WITHOUT tears.

We went through all the steps of checking her blood sugar; calculating carbs and insulin amounts; administering insulin.

It was all -- dare I say -- normal?

Almost anyway.

I guess I really am moving forward.

We really are adjusting to our new way of life.

Not that there weren't moments.  Sad ones.  Hard ones.

One of the deacons asked for prayers and testimonies.  He then specifically mentioned the blessing of Selah being home. Of how scary that first night was.

Tears welled in my eyes then.  

But... those tears were tears of blessing as much as tears of sadness.

Life could have been different had we not known what was possibly going on with her BEFORE it got bad.

It was also difficult when it came time for our fellowship dinner and she wanted a taste of ALL the yummy looking desserts displayed before her.

I'm thankful she's so resilient.  So smart.

She understood that TOO MANY carbs aren't necessarily a good idea.  She understood that she needed to make a CHOICE as to WHICH dessert to indulge.

Ironically, last week, I really just wanted to stay  home.  Be reclusive.  Retreat.

Anything but be with other people outside of our family.

Sunday?  I struggled initially with wanting to leave the house.  Part of me would have been happy to stay home and recoil inward.

But... that wasn't an option.

I'm so glad I put away my misgivings.  I'm so glad I put on a smile and went.

What release it gave to be with others.  To LIVE life.  To realize that our 'new' normal isn't much different than our 'old' normal.

Just a few more steps and bit more calculating.

Friday, April 3, 2015

Family Bonds

Seeing how our other children have responded to the news that Selah is a type 1 diabetic, has been quite heart warming.

The worry they exhibited as we left for the hospital that Thursday night.

The sadness they displayed when they heard the diagnosis.

The relief they exuded knowing she was ok - despite the diagnosis.

The willingness to learn about her diagnosis.

It's all been.... AMAZING!

Charity wants to know Selah's blood sugar numbers EVERY TIME I take it.

Trinity monitors how many carbs are in the foods we're preparing. She keeps track of what Selah's eating and let's me know. 

Elijah stands beside me, getting the blood glucose monitor ready; test strips out; alcohol swab prepared.  He's anxious to help care for his baby sister.

Bethany is the comforter.  She holds Selah's hand or distracts her as I'm giving her shots.

Jacob just wishes he could be home more to help.

This new experience we're going through?

It's been quite the means for our family to bond.

It's brought us closer.

Those first days, that first week, really - when I was so distraught - the older kids really chipped in.

They did their chores without being asked. They helped the younger girls with schoolwork while Techno and I were gone with Selah.

In essence.... they held down the fort.

I'm glad that in these times of trouble, we have all pressed in to one another - not pulled apart.

I'm sure in the future we may still have times of upheaval. Times of grief. Times where we will pull away instead of pressing in.

Yet, I feel certain, more often than not - our family will hold tight -- to one another..... To God.

Through those actions - we'll pull through ---- just fine.

Thursday, April 2, 2015

Grief is Ok

I've really been struggling, emotionally, with Selah's diagnosis.

I've cried more often than I haven't.

Yet, I've also adapted to our new 'routine' of finger sticks, sugar checks, and insulin shots.

Selah's adapted even better.

Still.... tears fall.... often.

I've been struggling internally with WHY.  Not so much 'why did Selah get diabetes, but Why am I such an emotional wreck?'

A friend from Ohio sent me a message that really helped.

As Selah's mom - I want to take her suffering for her.  I want to remove this 'life sentence' from her.

However....   I. Can't.

I know that.

It hurts.

It's HARD.

This friend acknowledged my feelings.  My grief.

She told me it was 'ok' to feel these feelings.

It was ok to still be sad. To cry.

Her words helped.  Healed.

Techno and I have talked about it, too.

I know it's OK to feel sad; to cry; to struggle.

However, I'm not used to being so emotional, so consistently, so long.

It was good to hear that such grief is ok; normal even.

It was helpful to have someone outside of our family to simply acknowledge my feelings and say 'it's ok to feel it and to go through it.'

I am learning to accept that these feelings will lesson.  The hurt will get easier.

I also acknowledge that the tears may erupt - out of nowhere - at anytime.

And you know what?

I'm learning to realize....