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.

326.  

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.

Wow!

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.

To.....

Grieve......

and.....

Eventually......

Accept.

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.

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.

Fear.

Sadness.

Control.

Lack of control.

Anger.

Confusion.

Uncertainty.

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.