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?

Bravery.

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.

Bravery!

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

Grief

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.

Heavy.

Sad.

Determined.

In charge.

Defeated.

Responsible.

Scared.

Empowered.

Grief stricken.

Numb.

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.

What?

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.