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.

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...

Listen.

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.