Friday, September 11, 2015


Just as I start to feel a little lighter, something swoops along and drags my heart back down.

Nothing specific most of the time.  It just hits.


Lead filled.


That's how I've felt the last couple of days - again.

I had felt I was coming out of the 'fog of grief'.

But more changes have brought it all back to the surface.

I know it's for a time.

I know it gets easier each day.

But, today?

Today I hurt.

Today I'm fighting tears at every turn.

Today I want to hide; to crawl into a cave and pretend our lives aren't ours.

Today I want my mom back.  To be able to call her, hug her, see her face again - here on earth.

Today I want my girls to NOT need injections of insulin with each meal they eat.  Just. to. survive.

Today I don't want to learn all new gluten free meals to replace Selah's favorites.  To diligently avoid cross contamination w/each meal I prepare.

Today I don't want to consider the auto immune complications that 'could be' in our girls' futures.  All our children's futures.

Today I don't want my oldest son to be a college sophomore - out on his own.

Today I want life back to the way it was.  Before all the changes; before all the heartache; before all the fear.

God, I NEED your strength.  I need your peace.  I want to feel joy.  I want to CHOOSE joy.  Help me do that.  Help me overcome the dread, the heaviness of all that's transpired over the last several months.  Help relieve my fears.  I KNOW things could be worse, but when it's all sitting there, heavy on my chest, it's hard to see HOW.  Be my feet, Lord.  Lift me up and keep me going.  Be my strength.  Get me through this day. This hour. This moment.

In Jesus name,

Wednesday, August 26, 2015

A Series on Gains

Initially I could see NOTHING that could be considered a gain with the diagnosis of Type 1 Diabetes.  So much was lost the minute we heard those words.  So many hard things were ahead for our precious little girls.  How could ANYTHING be gained by a disease that strives daily to take our girls' lives?

When I first posted about 'loss' I asked other parents to share what they felt was lost.  From that question, some also shared what they felt was 'gained'.  At the time, that sounded so foreign.  So unrreal.  How could anyone think ANYTHING positive could come from T1D?  I felt the devastation it was causing deeply. I saw the fear in my girls eyes every time I had to poke their fingers or stick them with a needle to give them insulin.  Positive?  What could be positive about any of this?

Yet, here I am.  Sharing some positives we have discovered from this road.   We are now almost 6 months into this new journey and I CAN see some positives; some things that have been GAINED as a result of this diagnosis.

A big one?


Our girls are SO brave.

That's something they have gained.

With the new school year starting, posts of kiddos going for their yearly check-ups are all over my Facebook feed.  I've seen numerous times how little ones have had to have multiple shots for vaccinations and maybe a finger poke to check for lead, iron, or possibly even glucose levels.  Responses to such posts have included numerous people applauding the bravery of these little ones.   I'll admit, prior to our girls' diagnoses, I did think they were brave when they had to get their vaccination shots and did so with minimal tears.  Now?  Now I KNOW how brave our girls really are.  When I saw the posts on kiddos getting shots, I couldn't help but think, "our girls go through that every day before they even eat breakfast."  It's surreal.  It's sad.  Yet, it does demonstrate just how brave they have become.

Both girls used to be TERRIFIED of shots. They hated them.  Selah would cry hours before her appointment if she THOUGHT she was going to get a shot.  Now?  Before every meal, large snack, and bedtime she just bares her little leg, tummy, or tush in preparation for her life saving insulin shot.  It's just part of life. She doesn't cry.  She rarely even cringes.  Same with Trinity.  She can even give herself her own shot.  Not to mention the multitude of times each day they have to prick their fingers to check their blood glucose levels.

When my mom was in ICU I saw her fingers.  She had been on steroids to clear her lungs and the medication had caused her blood glucose levels to rise.  They were doing finger pokes multiple times a day to monitor her.  As her health declined, those 'finger pokes' didn't heal, as our girls do.  I could see the black, bruised, pooling blood that was showing through the surface of her skin.  I cried.  For her, but also because I realized, THAT'S what I put my little girls through every day, many times a day, and will for the rest of their lives.

Talk about being brave.  I know some days their little fingers hurt and they don't want another poke, but... they also know they don't have a choice.  In order to give the proper amount of insulin, we need to KNOW their blood glucose levels. So... they suck it up and check their levels.


Definitely a gain.

Friday, August 21, 2015

Our New Normal

It's been 5 months since Selah's diagnosis and 4 since Trinity's.  The journey we started was so overwhelming. Especially in the beginning.

The emotions.
The carb counting.
The insulin dosing.
The finger sticks.
The fears.
The knowledge.
The lack of knowledge.

Everything was hard.  My emotions were raw. I was worried ALL the time.  I was scared. The girls were scared.  It seemed like life as we knew it was over.

In many ways that was true.  Our lives did forever change when we heard the words "you'r daughter/s have Type 1 Diabetes."  So many things will never be the same.  They will live with this diagnosis for the rest of their lives.  They will be poked and stabbed DAILY, multiple times a day, just. to. survive.

Yet.... despite that.... despite the hard adjustments, life is getting back to a 'new' normal.

Figuring out carbs isn't so stressful.  Calculating insulin dosages based on blood glucose levels and carb intake has become second nature.  Worrying has lessened - a little - thanks to the Dexcoms on the girls' arms giving us blood glucose reading all throughout the day. We can monitor the trends in their numbers and make adjustments as necessary.  The fear of a deadly low - although still a very real possibility - is less frightening because we can see them coming on with the Dex and make corrections as needed.

I finally emerged from my 'fog of grief' as I like to call it.  With so much hitting at once, I did recoil.  I cried - a lot.  I slept - a lot.  I did the bare minimum to get by, but other than that, I. was. in. a. fog.  

The girls' diagnoses; my mom's hospitalization; Selah's Hashimoto's diagnosis; my mom getting worse and passing away; then Selah's positive diagnosis of Cealiac -- it seemed more than my mind could handle.  

By the time the diagnosis of Celiac was confirmed, I was already beginning to come out of my fog.  I was ready to hear those words.  It was and still is hard to accept.  So many more changes.  But.... I was in a better place.  The emotions of the previous 5 months had been smoothed over a bit.  They weren't so ragged; torn; wide open. The wounds were beginning to heal.

We have started yet another journey.  Now we are traveling the roads of T1D AND that of Celiac.  They are bumpy, curvy, hilly, pot-hole-filled roads at times.  Nothing seems to make sense day to day on these roads. The curve you thought was ahead is now straight, yet the hill you thought you just crested now looms ahead larger than ever.  The pot holes seem to come out of nowhere.  But... you keep rumbling on.  You have to.  There's no going backwards.  You can't turn around and go back to your starting destination.  Plus, some days, these roads are lined with beautiful meadows of flowers and a smooth surface.  Some days the skies are blue and beautiful.  So, you drive forward.  Always striving for THOSE portions of the highway.

This IS our new normal and... it's ok.  Is it hard?  You bet.  Does it take a lot of work and effort?  More than you can imagine.  But, it's also very necessary in order to keep our girls healthy and alive. So.... we push on. We learn new things. We make adjustments.  We persevere. THEY persevere.  

I did a series of posts on "What was lost?" with the onset of Type 1 Diabetes in our girls.  Today's post is a catalyst of "What's been gained?"

Although we are still fairly early in this journey, I can already see some positives.  When we first heard the words, "Type 1 Diabetes", I wasn't sure I'd EVER see positives from this horrible disease.  My grief was too deep, too raw.  In reading posts from other parents, some did have 'gains' they shared.  I was happy to see those, but couldn't feel them... yet.  Couldn't even IMAGINE them.  I know I have a long way to go to see as many positives as were shared by others, but... I can at least see and even feel SOME already.

Join me in the coming posts to hear what we've learned over the last several months that has caused my attitude to change.  Much of it is time, as time does heal, but some of it is perspective and growth as well.

Come along on our journey. 

 It's gonna last a lifetime.  

Until a cure is found.

Monday, June 15, 2015

A Peaceful Departure

Not long after we arrived, we got word that the ambulance would soon be transporting Mom to the hospice center.

On our drive to Ohio, Dad had called stating the 'hospice lady' suggested we take mom to the center rather than home as they didn't feel we had adequate oxygen for her needs there.  In hindsight, they knew her time was extremely short and it would be easier on all of us for her to pass in THEIR care and not ours alone.

Techno, the kids, and I went to my parent's house and unpacked our vehicle and everyone but me took a much needed nap.  We all knew it would take a little while for her to be transported and then get settled into her room at the hospice house.

Once everyone was awake, showered, and changed we drove to Cleveland to see her again.

The view outside her room was breathtaking.

God provided flowering trees, a calm lake, and best of all, a BEAUTIFUL sunset on Lake Erie not long after our arrival.

Once again, mom awoke as we solemnly entered her room and approached her bedside to give her hugs.  She was lucid and calm and peaceful.

"It's really not a lie.  You ARE here."  When she said these words this time, however, it was less of a question and more of a resolution.

"Yes, mom.  We're here." I hugged her long and hard.

We sat with her and dad as we ate our dinner of take out pizza.  The kids meandered around the patio overlooking Lake Erie right outside her door.  The littles were thrilled to have found a playground just a few doors down and around the side of the building.  The older kids happily supervised them while I sat with my mom.

We surveyed the facility, mentally noting what we'd do with the kids the next day.  Wifi was available for Techno to work remotely; a playroom was just down the hall for the girls; the playground was just a short walk outside - as we had already discovered; there was room for the kids to set up their computers to work on school as the week progressed.

We made plans for Dad to stay with mom Fri (the night of our arrival) and I'd stay with her Sat since Techno would be with the girls before heading to Cincinnati to work for the week.

We left late that night.  Hugging mom.  Kissing her goodnight.  This time, she didn't wake up and say, "It's not a lie?"

In my heart I knew this really was goodbye.  I didn't fully admit it yet, but I think I knew.

An hour or so later, exhausted, we arrived at mom and dad's house.  We quickly got everyone ready and tucked into bed.  Techno and I followed on their heels.

At 5:30 am, my cell phone rang.  I didn't really need to answer the phone to know why someone was calling so early, but answer it I did.

Dad was crying.  "She's gone."

My own tears fell.  He had gone to bed a little after midnight.  The nurse came in around 5am to give mom her morning meds.  He gently woke my dad to let him know she had passed quietly, peacefully in the night.

I'm so very grateful God granted my prayer for us to make it to Ohio before this time arrived.

I know my mom was just waiting. Waiting to see ALL of her family.  EVERYONE came to see her that Sunday before when things took a rapid turn for the worse.  The only ones missing were my husband and children.  She had thought we were all going to come that first visit.  When we didn't, she held on.

She waited.

She gave us the gift of saying goodbye.  Of getting one last hug.  One last memory.

I'm so grateful for such a gift.  My children have a beautiful scene of the setting sun over Lake Erie, with flowering trees, a warm gentle breeze, and a playground filled with laughter as their last memory of time spent with Mamaw.

The view from Mom's courtyard right outside her room at the hospice center.
What a beautiful gift God gave us that night.
I have that memory too.  Plus the knowledge that I helped fulfill my mom's last wish to have her whole family gathered around her in the end.

No, we weren't all 'literally' by her side as she passed, but we all had an opportunity to see her; to say goodbye; to hug her one last time.

What a precious and peaceful way to depart from this life on earth and enter eternal life in Heaven with our Lord and Saviour, Jesus Christ.

My dad shared with me what my mom asked him not long after arriving at the hospice center. She held his hand and said, "Why is it taking so long?"  Puzzled, he asked, "So long for what?"  She quietly replied, "To get to Heaven."

We were all there.  She was ready.  She yearned for a home far better than this one.

I love you mom.  It wasn't a lie.  We came to say goodbye.

Friday, June 12, 2015

Saying Goodbye

Mom held on.

They had kept her at the hospital.  Trying to coordinate her release home with hospice to my arrival.  The days leading up to that point had been rough at times.

Following mom's 'rally' right as I left to return to Wyoming, she began to become a bit more disquieted.  My brother shared some of the heart wrenching conversations people had with her.

Her body was dying.  Her mind was having a hard time holding on.

She no longer even remembered my visit just days before.  She asked for me. She wanted me there.  She accused everyone of lying to her.  That I wasn't coming.  Her only daughter.  The only of her three children not present.

It broke my heart.

So, when we arrived, I found the hospice worker by her side.  Dad had just stepped out for a bit.  She told me mom had been awake and calm just a short while before.

I walked over and touched her frail shoulder.  I gently spoke.  "Mom, we're here.  We made it."

Her eyes opened.  Lit up.  Her lips spread into a smile.  Her now spindly arms reached up and grasped around my neck.  As she held tight she whispered, "Is it a lie?"

"No, mom," I spoke through tears.  "It's not a lie.  You're really hugging me."

"I knew you'd come. They kept telling me I was lying. That you weren't coming. But I knew you'd come."

I slipped back as I motioned to Techno and the kids.  "We're all here, mom."  With that, each of the kids and Doug gave her a big, but gentle hug.

I sat down next to her and held her hand.  "It's not a lie?"  She asked again.  "No, Mom.  It's not a lie. We're really here.  Do you remember me being here last week?  I told you we were coming right back."  She furrowed her brows and shook her head no.  My heart broke, again.

She wanted us there.  We made it.  Now she could rest.  It was just a matter of time.

Thursday, June 11, 2015

I Don't Want This

After returning to Wyoming from my first trip to Ohio, I immediately started making preparations for our family's return trip back to Ohio the next week.  An eye procedure for Doug; an endocrinology appointment for Selah; a diabetes education class for Trinity; packing; shopping; and finals for Jacob; all had to be completed in the days leading up to our cross country trek.

Upon receiving a text from my brother Wed night - the eve of our departure - stating my mom's time was short - even shorter than we initially anticipated - Techno and I made the decision to drive straight through from Wyoming to Ohio the next morning, as soon as Jacob finished his last exam.  No hotel stay as originally planned - just gas, food, and 'potty' breaks.

As we drove, my mind raced.  Would we make it?  How could this REALLY be happening?

Her will was waining the longer I was away.  The longer it took for the remainder of her grandkids to arrive.  Her body was so weak.

I prayed we'd arrive in time to say goodbye.

I could hardly believe I needed to utter such a prayer.  It was surreal.

All the kids were crammed in the car with our belongings.  Enough to get us through a 24+ hour long drive and a week of 'visiting' away from home.

At one of our many gas stops, I managed to be alone in the bathroom of this nondescript , small filling station.  Sitting there, sobs came.  I remember literally crying out to God, saying, "God, I don't want this. Any of this."  My heart was breaking.  Broken.

In just a couple short months our girls' childhoods had been changed forever.  Their lives now altered by type 1 diabetes.  Weeks later, our lives were once again in upheaval.  My mom was dying.  All in 10 weeks time.  It didn't seem real.  Possible.  It seemed as though it might be more than I could bear.

As I cried, I recalled Jesus in the Garden of Gethsemane.  He too cried out to God in anguish.  He knew his own death was imminent.  He knew he must be crucified. He knew he had to die on the cross. Be buried.  All in order to conquer death once and for all.  For all of creation.  For all who believe in Him. In Mathew 26; 39 and 42 he pleaded with God to take that cup from him.  Much like I wanted to plead with God to take away all that was transpiring in our lives.  Yet Jesus didn't cease there.  He then followed up with, "nevertheless, not as I will, but as thou wilt."

As I cried, I surrendered - just a little - the cup that I had been passed.  The cup of grief I was holding on to. The loss I so deeply felt from the chronic disease of type 1 diabetes now being an ever present thorn in our girls' sides.  The looming physical loss of my own mom from this earth.  I wept.  I laid a small part of my grief at Jesus' feet on that very cross on which he died.  The place he took my sins, my pain upon himself.

The heaviness was still present.  The grief was not gone.

Yet, I knew I didn't have to carry it alone.

God's shoulders were much heftier than my own.  His strong, loving hands would help lift the burden of the grief; to ease the pain - just a little.  I knew he grieved too.  He KNEW my pain, my sorrow, my loss.

I love because He first loved me.  1John 4:19

I feel this pain, this sorrow, this loss because of love.  The love I have for my precious little girls.  The love I have for my mom.  The woman who taught me love by her actions when I was but a little girl.

Yet, God's love will carry me through.  Will give me strength.  Will one day heal the hurt.

Even though this time of grief is hard.  Unrelenting, it often seems.  I know it's all because of love.  My love.  My girls' love.  My mom's love.  Ultimately...... HIS love.

Wednesday, June 10, 2015


It's hard.

It's raw.

It's unpredictable.

It's necessary.

It seems as though this Spring has been filled with grief for our family.

First, our girls diagnosis of diabetes.

Then, my mom was hospitalized for a second time in 2.5 weeks with recurring pneumonia.

That didn't seem THAT concerning since she's been hospitalized before for similar reasons.

However, things did not turn out as they usually had this time.

I went to Ashtabula, Ohio to see her upon her request. The nurses stated she 'wasn't critical and would most likely go home early the next week."  I was torn initially, due to our girls recent diagnoses and life altering situation.

Yet, mom pressed.  Telling others she didn't think 'it looked good' and 'This is it.  I'm not gonna come out of this one.'

I arrived Saturday to the upbeat woman I knew and loved. Albeit weak and without a voice. She didn't know I was coming so got teary eyed as her face lit up and she hugged me.  "I knew you'd come," she whispered.

I left that night and ate with my dad and brother feeling confident mom would be home soon - once they cleared the pneumonia again.

The next morning, while leisurely enjoying my coffee and chatting with my brother, a call came in.  Dad answered.  A few moments later, the TV went off, lights turned out, and he entered the kitchen.  "We have to get to the hospital.  We should have been there already."  With that, he began to cry.

Rob and I just stared at him. Then one another.

"What happened?  What did they say?"  I asked.

"They want to now our wishes."  He choked out.

With that, we all went into motion. Rob headed out to get the car ready.  I ran to get dressed.  Within minutes we were whisking dad down to the car and heading to the hospital; making calls as we went.

Upon arriving, Mom hugged me and said, "This is the end.  My funeral money is in the envelope......  The life insurance policy is in the....."  I could't believe my ears.  What was happening?  How?  Why?  Yesterday she was fine.  Just a slight case of pneumonia. Antibiotics; steroids; she was going to get better.  Now????

Talking to the nurse, she mentioned bringing in hospice.  Told me the heart doctor had talked about possibly needing to put her on ventilation.  Her oxygen levels were barely 50% despite being given 50% oxygen.  However, her body wasn't really strong enough to withstand such treatment.

It didn't make sense. What was going on?  What happened to the mom I had seen not even 24 hours earlier?

Each time I talked to my mom, I saw a peace in her. She knew all along this was coming.  She was ready.  She wanted to go home.

I wasn't ready to let her go.  "Why? Why are you giving up?" I asked.  She smiled lightly and caressed my face.  I knew the answer.  She was tired.  Weak.  Tattered.  She.   Longed.   For.   Rest.

True rest.

So much happened in the following days.

Decisions were made. Papers filled out.  Words spoken.  Hugs given.  Family meetings were had.

Hope was renewed for the here and now then quickly dashed again as we'd hear different things from different medical staff.

While in ICU mom woke up and held my hand and said, "I really want to see Doug and the kids."

Part of me knew right then.  Yet, part of me wasn't ready to accept the reality.

She wanted to say goodbye.

I called Techno.  Plans were quickly made for all of us to return the next week.

Mom rallied.

On Wednesday, the day I left to retrieve my family, she was pushing herself up in bed and feeding herself ice-cream; something she hadn't done since right after I arrived on the Saturday before.

Tuesday, June 9, 2015

Finding Rest

With so much happening in the last 2 months, my emotions are in complete turmoil.




In charge.





Grief stricken.


How can all these thoughts and emotions co-habitate my brain at the same time?

We started with the diagnosis of our youngest daughter with type 1 diabetes.  Just a mere 3 weeks later we received the same diagnosis for our 9 yo daughter.  The same day we also learned my mom was re-admitted to the hospital with recurrent pneumonia. The second hospitalization in 2.5 weeks.

Upon flying to Ohio to see her on her request, we learned  that she was in the end stages of COPD and hospice needs to be called in.

Not. Exactly. What. I. Expected. To. Hear.

Then, at our youngest's follow-up endocrinology appt we found out she tested positive for possible hypothyroidism and Celiac Disease.


She's SIX.

How can all this be happening in such a tiny, young body?

My mind reels.

My heart aches.

My eyes cry.

My body wants to recoil and sleep.

Today, anxiousness seems to be the prevailing feeling that is surfacing.

Not sure if it's just the culmination of all that's transpired over the last couple months or if it's the stress of all that's approaching in the coming weeks as we travel to Ohio.

Most likely it's a combination of these things.

I struggle to find the words and thoughts to explain my feelings.

To tell others where I am emotionally.

I cry out to God daily.

Not asking why; but begging for his strength because mine is waning, faltering, dissipating.

I've cried over Scripture that urges me to 'let go' of all this and put it at his feet.  I KNOW that's what I need to do.  I KNOW he can carry this burden.

Yet, I'm clinging to this fear; these worries; this grief.

I continue to hold fast to his promise to carry me through.  To bring good of all that is happening.  To help me be a light and strength for those around me.

Even during this dark time; this grief laden time; this time of feeling anxious and depressed; scared and tired; I know God is with me.  I know he hears my prayers.  I know he cares for me; our girls; my mom.

I know.

In that I'm trying to rest.

Wednesday, May 27, 2015

What Can I Do to Help? Support?

Q:  My good friend asked, "What can I do to help you?  Support you?  Make this journey more bearable?  How can I share your burden?"

A:  I must admit, this is the HARDEST question to answer.  I'm not sure I honestly know HOW to answer this question.  I'm not sure I know how others CAN help me; share this burden.  Sometimes it feels like a VERY lonely road to travel.  The road of diabetes.  But... some simple things that come to mind...


Let me cry, vent, get angry, talk, cry some more.

Don't try to tell me 'it's ok', 'it'll get better, easier', 'it could be worse.'  Those sentiments - although I know they come from a good place, only make me feel bad about my grief. They make me feel I'm wrong for feeling what I feel.  Instead, acknowledge my state.  Let me express my sadness, my anger. Whatever stage in which I happen to be.

If you think you are capable, up to it, be willing to LEARN.  Learn what type 1 diabetes really is.  Learn to help care for our girls so if - no when - we need respite, we have a pool of people to call on.

Pray for me.  Often.  Ask for God's strength and wisdom as we traverse these waters.  Ask for God's hand of protection to be upon our girls.  Ask for courage to face the hard days head on.

Be willing to acknowledge that my grief is real.

Remind me of the enemies attacks.  Help me be strong.  To fight back.  To not blame myself.  To remember that their blood sugar numbers are not a reflection of my parenting, but a reflection of this disease.  Remind me of how unpredictable this disease is and no matter how diligent I am in monitoring their glucose levels, that they may still be WAY out of whack with nothing I could do to change them.

Call me.  Allow me to just talk.  Sometimes I will want to ONLY talk about diabetes.  Let me.  Other times I may not want to talk about IT at all.  Help me find other things to talk about.  Distract me.  I know that's asking a lot.  How will you know where I am?  I'm not sure I'll know myself.  Be willing to test the waters.

Sometimes I may need to be alone.  I may 'skip' events or activities so that I can have some 'quiet time' alone with my thoughts and feelings.  Time to pray and talk to God.  Time to 'not think' about all that caring for two T1D children entails.  Don't be overly alarmed when this happens, but at the same time, be watchful that I don't slip into depression and hide indefinitely.  Yes, a tall order, I know.

Please help me monitor our girls.  When we are in the public arena and you are around our children, let me know if they 'seem off'.  If they aren't acting themselves.  If they seem emotional and droopy, combative and rude, overly quiet or moody - any of these extremes could be indicative of swings in their blood sugars. We need to check and potentially treat them to correct the levels.

In time, I know my grief will be less raw, less extreme. When that time comes, help me rejoice over the girls' successes and victories.  Help me remember they are still my precious little girls with the potential to be and do whatever God intends for them.  Help me encourage them.  Help me accept encouragement myself.

In a nutshell?  Be the friend you've always been.

Tuesday, May 12, 2015

Why So Touchy?

Q:  Why are you so touchy?

A:  In short?  Basically because I'm grieving.  I'm grieving a loss, a deep felt loss for all that I've discussed up till now.  I'm grieving the 'what if's' this disease offers.  I'm grieving the loss of innocence and freedom diabetes stole from our girls, our family.  I'm grieving the pain I have to inflict upon my girls DAILY just to keep them healthy, alive.  I'm grieving the fact others don't understand the gravity, the seriousness of this disease.

In addition, I'm simply overwhelmed.  Grief is tough to bear.  It seems even harder when that grief is confounded by needing to step up to the plate and fight a disease that wants to destroy our little girls. If I don't fight, I lose them.  Even if I do fight, I could STILL lose them.  But.... I know I have to persevere.

I'm also tired.  Exhausted some days.  Not only emotionally and mentally but physically.  Something that's lost that seems a bit trite on the outside is sleep.  When you have a child or two or more with type 1 diabetes, sleep is no longer just 'restorative rest'. It's a cause for alarm, for fear, for uncertainty.  You see, while sleeping, the child won't FEEL the low coming on.  We won't SEE the impacts of such a low.  Death is VERY possible.  Due to these 'possibilities' I choose to check their blood sugar in the middle of the night.  Sometimes more than once.  You see, double digit numbers bring fear; triple digits bring stress.  As another mom of a T1D put it, "Numbers aren't just for sesame street to us; for families living with type 1 diabetes, numbers rule. the. day."  So, when I snap?  Know I may just be sleep deprived.

I also struggle with being patient.  Patient with well meaning individuals who make inconsiderate comments due to lack of knowledge, information.  I don't want to lose friendships, to hurt relationships, but.... it's hard.  These are my babies.  Mama bear will roar.

You see, right now?  My very sanity is on the brink. There is so much to consider each day, each meal, each moment.

My nerves are frayed at times.

Sometimes I just want to cry.  Oftentimes I do just cry.  Often I feel I can't control when I'll cry, snap, recoil.  It. Just. Happens.

My brain is on overload.  So much to know.  So much for which to keep track.  Two logs of blood sugar.  Carb counts.  Insulin ratios.  The right insulin pens.  Then there's the general information about diabetes. What it is. What is isn't.  What CAN happen as a result of this diagnosis.  Finding support - from others walking this path. Others who understand the raw, unfettered emotions.  It's a lot.

So, I may be a bit touchy, grumpy, not quite myself.

Q:  At least it's not cancer, right?

A:  Of course I'm happy that our girls do NOT have cancer.  I cannot even imagine how difficult it must be to go through such a diagnosis with a child.  However, you have to understand that such a statement does not - in anyway - make me feel better.  Why?  This disease, diabetes?  It too can have severe consequences.

I understand and empathize with the fact that a child given the diagnosis of cancer has an increased chance of death.  I acknowledge that the treatment for such a diagnosis is traumatic at best.  Some have terminal, inoperable cancer and death is inevitable.  Again, I cannot fathom the heartache those families feel.  However, most don't understand, don't know that death is a reality we face daily.

Many a child has had life altering consequences from this disease.  Extreme high blood sugars in the short term can leave a child with temporary or permanent brain damage.  Swing to the other extreme of a severe low and death is knocking on the door.  I've already heard of far too many children taken too early to this monster.

Add to that the on-going, life sentence of type 1 diabetes.  Unless a cure is discovered in my girls' lifetime they will NEVER get a break from the day to day difficulties of this disease.  Never a 'time out' from treatment.  Such a lapse would lead to their demise.  It's. Not. An. Option.

So, although the simple answer to this question is 'yeah, I am glad it's not cancer', the more complex answer is much deeper.  It's like comparing apples and oranges.  They are two VERY different beasts.

Just as I would not want the diagnosis of cancer, I also did NOT want the diagnosis we did get of diabetes.

Right now there's no cure.

There's no permanent fix.

It's a day in, day out struggle.

Some days are easier than others.  Some are down right hard, unbearable.  We're fortunate that we haven't had those unbearable days yet.  But... we know the possibility exists.

The grief, the loss..... is real.

I hope I've helped you understand, to some minor degree, just how devastating this disease is to any family.  To our family.

I hope you can now resonate with the words "loss" and "grief" as they relate to this unwelcome adventure in which we find ourselves.

Friday, May 8, 2015

How Are the Other Kids Holding Up?

Q:  Just recently a friend asked "How are the other kids holding up?"

A:  The simplified answer is, "Very well."  However, I'm not naive enough to think this hasn't impacted them.  It has.

Their lives were also turned topsy turvy when we received these two diagnoses so close together.

I'm certain that all 4 of the other kids are worried for their little sisters, but I'd be willing to bet they are also somewhat concerned for themselves.

Why? The risk is there. The risk they too could develop type 1 diabetes.

I've now read and heard of families with 3 or more siblings -- all in one family -- being diagnosed with type 1 diabetes.

So... I KNOW that has to be in the back of their minds day in and day out.

Plus, let's face it, it's hard to see your little sisters go through something like this.

They get to see the girls wince as I inject the insulin into their little bodies.

They get to watch Selah recoil and tense up as I try to prick her finger for yet another blood sugar check.

They get to see the bruises left behind from insulin shots.  Yep, bruises.  They are tiny little girls and I'm apparently not the best 'shot giver'.  I try my best to be very gentle, but sometimes I hit a more sensitive spot; sometimes they flinch which causes the injection to be more painful, forceful if you will.

All of the kids have been wonderful at supporting, encouraging and comforting Selah and Trinity.  From distracting them during a shot, to hugging them after a shot, to monitoring them for a high or low episode.

The older kids are GREAT at comforting me.  What?  Yep, They. Comfort. Me.

How crazy is that?  I'm supposed to be the one comforting them.  But... right now?  They see how difficult this time has been for me. They are picking up the slack and trying to push and pull me through this.

Little Charity is probably the most profoundly impacted.  She's smack dab in the middle age wise of the two newly diagnosed T1D girls.

In some ways, I'm sure she feels 'left out'.

The other two have gotten new necklaces and bracelets - granted they are medical alert bracelets and necklaces, but to a 7 year old?  It's still pretty jewelry.  They also received teddy bears, new bags to hold all their supplies, a backpack filled with 'goodies' like a new water bottle and books etc from the JDRF.  I know it can't be easy for her to see her sisters get all this 'fun stuff' while she gets nothing.  At the same time, I imagine it's hard to watch them go through all they go through day in, day out.

Talk about conflicted feelings.

Jealousy and sympathy?

Wow - try to reconcile THOSE!

But.... with all the kids we try to be available to talk with them.  To listen to them.  To hug and hold them.  We are encouraging them to be involved. To ask questions. To help 'look out' for their sisters.

But... we are also trying to listen to them about their lives and feelings too.  Not JUST about diabetes and their sisters' tumultuous diagnoses.  We are encouraging them to live their lives just as they had been. Granted, we acknowledge so much has changed, yet, we are all still 'The Williams Family.'

THAT hasn't changed.

So, in a nutshell, they are all doing well --- considering.

We were blessed that neither of the girls needed to be hospitalized.  We caught both early on in the disease process.  We will monitor the other kids and have testing done to check for antibodies periodically.

We are doing all we can to keep life as 'normal' as possible, while still doing all we need to care for Trinity and Selah the best we can.  The older kids just completed training with a nurse to learn to give shots and care for the girls.  We have resources available if the kids need more 'formal' help in coping with this situation.

For now?  We seem to be holding our own -- as a family.

Thursday, May 7, 2015

Aren't They Just Like Other Kids Still?

Q:  Well, they're really no different than other kids, right?

A:  Yes, and no.  Sure, they can still do things other kids do; they'll still act like other kids act, but...... innocence has been lost.

Can you imagine how heavy it must feel to have to be able to track your own health - at the ages of 6 and 9?  To know that a severe low could result in not only feeling 'yucky' but seizures, unconsciousness, even death?  To know it's imperative that you try to 'identify' what those lows and even highs feel like; so you can tell mom and dad; so that life saving measures can be taken?  Our girls have had to grow up.... fast.  Overnight really.  I am a big fan of teaching responsibility at a young age. But... this disease?  It's not like taking responsibility for a pet, or of chores mom and dad have given you.  It's responsibility for ones own life.  That's huge.

No longer can play be carefree.  Before heading out to run, ride their bike, jump on the trampoline with their siblings and friends, they have to check their blood sugar. If it's low?  Snack and wait.  If it's high?  Push fluids, possibly administer insulin, and monitor often.  Then... while playing.... they have to stop, come in for a blood sugar check. Again, if low, snack and wait.  Then once play time is over?  More checking.  Follow that with checking a couple hours AFTER playtime has finished.  Blood sugars can take huge dips and soars following excessive exertion.  Even if 'just' from play.  It's exhausting.  Worrisome.

They can no longer just 'run with abandonment' as kids like to do.  They. are. tethered.

On the topic of 'being tethered'.  As the girls move forward we hope to have them using insulin pumps and continuous glucose monitors.  Great tools.  Potentially life saving measures.  A 'bionic pancreas' of sorts.  However, as another D-mom put it, our kids sometimes feel like 'cyborgs' because of these life saving devices.  Do you think they 'feel' like 'every other kid' when they have to be connected to various devices just to monitor their blood sugars and keep insulin coursing through their bodies?

Almost synonymous with loss of innocence is the loss of independence.  These lows and highs somewhat dictate their lives.  What, when, and how they do things will all be tainted by diabetes.

Add to that decision making they have to make. Hard and basic decisions.  Something as trivial as pastries being available at church between services results in a difficult decision now.  Our girls have to make a choice.  Is the 'treat' worth another shot?  Do they simply do without and feel left out?  So many things that were once simple, a part of childhood, have been robbed from them.  It's like a black cloud lurking over them, always, wherever they go, whatever they do.

Q:  Isn't their future fine, now that you know and can treat them?

A:  Again, not a black and white answer.  Yes, hopefully their future is 'just as bright' as the next kid.  They CAN do whatever they want and put their minds to in terms of their life.  Yet, this disease does have a grave impact on their future.

They may experience rejection from taking part in certain activities, sports, etc.  If the individual running the activity doesn't understand T1D, they may not allow them to take part.  If they are in a 'brittle' phase with their diabetes, we may, as a family, choose not to take the added risk of some activities.

Plus the bullying that could transpire because they are 'different'. They have to check their blood sugar (multiple times a day); then administer insulin every time they eat.  Not all kids are kind when it comes to such 'oddities' when they aren't familiar with these measures.  Friendships can be altered, shattered, or not formed all because of T1D.

Not knowing what their blood sugar levels will do may rob them of some of their confidence.  Learning to drive can be frightening. What if they experience a severe low, while driving alone?  It's daunting.  What other 'normal childhood milestones' might be impacted due to these uncontrollable variables?

What about the fear of other auto immune diseases?  Yep, kids with T1D are, unfortunately, at a greater risk of developing another disease of the immune system. Doesn't seem fair does it?  It can impact their future.

Then there's the thought of marriage.  Even though none of us know what the future holds, most of us have dreams of our future spouse.  For our girls?  Will 'the one' be willing to take on this disease for better or for worse?  For life?  Not everyone is willing or capable of such a commitment.  The future is so uncertain now for our little girls.  Assume they do find Mr. Perfect who is willing to live with T1D for the rest of his life. Then they have the decision, the worry, the uncertainty surrounding having children of their own.  The potential risks during pregnancy. The possibility of their own child/ren developing T1D as well.  Their future is impacted.

What about career options?  Most job opportunities should be open for anyone with T1D.  However, some dreams for certain individuals have been lost.  Military? NOPE, not much of a chance.  Pilot?  Not gonna happen.  Too much of a risk.  Remember those highs and lows that can't be completely controlled?  That's a gamble not worth taking in these professions.  I'm sure there are others that will be 'out of reach' now that our girls have the diagnosis of type 1 diabetes.  It's hard.  It can be sad.  It causes grief.

Innocence and the typical carefree childhood were lost the minute this diagnosis was announced.

Dreams and aspirations for the future were squelched or at the very least altered for some.


Deep, real, losses.

Friday, May 1, 2015

Thankful for Technology

Since the girl's diagnoses, Techno and I have waffled back and forth with 'middle of the night' testing.

I want to test EVERY night; multiple times a night. Why? Probably because of fear and my need of control.

Techno, on the other hand, feels it's not necessary unless we've seen some 'wacky' numbers throughout the day -- especially before bedtime.

He knows I need a full nights sleep to function well the next day.  I know that my mama's heart needs to know I'm doing all I can to help protect our girls.


With the Continuous Glucose Monitors now available to both girls, those middle of the night 'checks' are less necessary as the CGM will actually alert us to these lows and highs we fear.

YEAH for technology.

The sensors they wear on their person submits a signal to the iPods we have in their room which then sends a signal to our iPhones alerting us in the middle of the night if numbers raise or lower outside of their 'acceptable' ranges.

This week was our first 'scare' and thankfully we DID in fact have a CGM on Selah.

Her blood sugars were on the high end after dinner and most of the night.  She sat in the mid 200's throughout the evening and into the early morning hours.  Her alarm continually went off to alert us that she was above her 'suggested range'.  After being awakened half a dozen times or more for elevated blood sugar numbers, I. Didn't. Hear. the low blood sugar alarm at 4 am.

Fortunately, Techno did.

At 4:15 am, I was aroused from my slumber by my phone chiming at me.  In a state of grogginess, I picked it up and stared at the screen.


Wait?  52?  That's LOW!

What a wake up call THAT was.

Within moments, I was fully awake and slipping on my lounge pants and heading out the door.

I noticed the lights in the living room were on and heard little voices.

I had barely noticed that Techno was NOT in bed as I leapt awake.

He had already gotten Selah up (which woke the other 2 littles) and had checked her blood sugar and given her juice.  They were now just waiting the 15 minutes to 're-test' and determine the next steps.

Her actual blood sugar had been 60.

Better than 52, but still too low for comfort.  Especially at 4 am.

The scary part of this for me?  She continued to be high-ish all through the night.  We most likely would NOT have checked her as the fear of a low was minimal.  Plus, if I HAD decided to do a middle of the night check (and we hadn't had the CGM on her) I would have checked at 2 am and gone back to sleep.  Her blood sugar didn't fall until later.  Gasp!

Had we NOT had the CGM on her; I would not have planned to get up at the right time to check her.  Our morning could have been MUCH MUCH more grim.

If blogs were audible you'd hear my sigh of relief right now.


Since this first 'middle-of-the-night-low', we've experienced 3 other nights like this with both girls.  Especially Trinity - having at least 2 lows a night needing to be treated.

I'm so very thankful for this technology.  It's not a cure.  It's not full proof.  But... it is a tool.  It does give us information.  It does alert us to 'warnings'.  It's a way for us to keep better tabs on their glucose levels.  It's a means for us to take even better care of our precious little girls.

I'm not always a tech fan.  I get extremely frustrated when technology doesn't work as it's intended.  But..... I'm a HUGE fan of THIS technology and all it can do to protect our girls.

Dexcom with Share.... YOU ROCK!!!

We are ever so grateful we have access to this technology.  To this life saving information that kept our girls from going dangerously low...

in.... their...... sleep.

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.