The rest of life.

The duo was temporarily pushed aside.

We separated slightly.

She was grieving. 

She had lost her child.

I had two healthy children to love.

 

Our lives together altered.

Somewhere deep down inside, I felt some relief and euphoria.

All the worries, the stress, as well as the advocating were over. 

 

The emergencies that shot me out of my life and into hers in a millisecond were gone.

Gone...

Her voice, her twinkly blue eyes, her devilish grin, her soft skin...

She was gone.

Oh, I missed that sweet child.

 

While she mourned, I was able to heal, wrapped in the love and health of my two children.

While I mourned, she was without child.

 

We were separated further.

 

I tried not to have any expectations. 

I wanted her to be able to mourn as it came at her. 

 

I silently monitored her emotional health.

I watched for any signs that indicated she was not coping. 

Allowing her this space kept us apart. 

It was a necessary separation.

 

The following Christmas was spent apart.

We had never been apart at Christmas. 

It was different. 

It was new. 

It wasn’t what duos do. 

 

Summer holidays apart.

Summer holidays together.

Both were strange. 

It was different. 

It was new.

 

Incredibly, people saw me as stronger again.

She was mistaken for weak.

Even though, she was surviving without her daughter.

People judged.

People were unwilling to accept her strength.  

 

She felt the external world’s expectations of her.

She knew they thought she would fail.

She was determined to show them the truth.

 

She started taking college courses at night school. 

 

College courses.

 

She let her employer know she wished to advance. 

 

Advance.

 

She applied for positions internally.

 

New positions. 

 

She volunteered at her workplace. 

 

Volunteered. 

 

 

I was so proud of her.  

So proud. 

Life goes on.

Life goes on. 

 

That’s what they say. 

And they are right. 

Life does go on, but, never as it did before.

 

She went back to work.

Back to work. 

She was kind to people. 

Kind to people.

 

She spent time with my kids. 

Spent time with my kids.

 

She took us on mini holidays. 

Mini holidays.

She constantly said how much she owed me. 

How she needed to pay me back. 

How she couldn’t have done it without me.

 

I admired her so much.

I ached for her so much.

I loved her so much. 

 

I told her that all the time.

Not just once.

 

The goodbye.

In the depths of darkness, people surrounded her. 

They asked so many questions. 

They gave advice.

 

Advice.  

 

I watched. 

I listened. 

I was her body guard.

 

I wasn’t sure how to say goodbye. 

I couldn’t imagine how she was going to.

 

We clasped hands as the Minister spoke.

We clasped hands as others spoke. 

We clasped hands as my letters were read. 

We clasped hands throughout the slide show.

 

At the cemetery, family and friends surrounded us.

They watched as her child was laid to rest.

They watched as we clasped hands, then bodies, and cried from the soul.

 

Strangely, the sun shone.

The wind blew.

Even the birds sang... amongst our gut wrenching sorrow. 

 

The time had come.

‘She’s not right’ she tells me.

 I ask for more details. 

‘I don’t know exactly, but, my girl has gone downhill.’

 

May twenty-first. 

Two weeks after nearly dying herself...

Her daughter died. 

 

I was away.

 

Her daughter died.

 

I was away.

 

I watched her talk to all those people. 

She told and re-told the story of the last few days, hundreds of times. 

She was strong.               

 

They all wanted to hear the story. 

They all wanted to see her. 

I wanted them all to go away and leave her. 

How many times should she have to tell the story?

 

She was still recovering from her heart attack.

I didn’t know how she would do it.

 

I had not been there.

 

So much company.

So much noise.

But nothing could drown out the silence in her home.

It was so quiet without her daughter.

 

We never had a minute alone.

I didn’t know what to do.

 

I was beyond sad.

I couldn’t fix this.

I had not been there.

The perverbial end.

She nearly died. 

I was sure she would die. 

The doctor didn’t understand.

He didn’t know she had a terminally ill child at home...waiting for her. 

He didn’t understand the ‘dynamic duo’ couldn’t end.

 

Nothing was recognizable, except for, the color of her eyes.

Huge, bright, blue eyes stared at me, silently pleading, “Help!”

I knew it wasn’t heartburn. 

Body temperature was 45degrees. 

Vomiting.

Freezing.

She was freezing.

 

“No, don’t leave us in this room alone!” 

“Come on!” 

“Please, you don’t understand.”

 

I wanted to scream. 

I felt so helpless and I knew she was dying. 

Finally, the doctor saw her.

Things began to move very quickly.

 

HEART ATTACK!

SEPSIS!

ICU!

Infection from the surgery had spread through her entire body.

The infection made its way into the sac around her heart.

That caused the heart attack. 

 

Released from the hospital one afternoon.

Fighting for her life that same evening.

The steroids she was taking had masked her white blood cell count. 

She kept being released with the infection at bay, but, not under control.

 

In the ICU, things went from bad to worse.

The family gathered. 

We waited. 

 

‘NO!!!!’

‘NOT THAT!’

‘NO!!!!!!!!’

‘Anything, but that!’

 

My soul broke.

Oh, god.

This is too sad.

They didn’t really say that?

 

‘No!  Come on!’

‘Her daughter!  Her daughter!’

 

A second miracle occurred. 

She survived. 

She cheated death.

By the time, she is well enough to go home;

Spring was in full bloom.

 

She was beyond thankful to me.

I was numb. 

I had almost lost her. 

I had almost lost her.

 

The beginning of the end.

I was not home much the month of April. 

She had been so sick. 

It went on for so long this time.

 

The doctor wanted to treat with steroids first. 

She was admitted to hospital. 

She gained and lost fifty pounds several times throughout the ordeal

‘You are fat!  Look at your fingers! Look at your ankles!’  I was shocked.

 

It was the steroids.  She was a wreck.

Eventually, she begged the doctor to do a bowel resection. 

 

If I wasn’t with her in hospital; I was caring for her babe at her home. 

My family was surviving without me. 

They had to. 

She was missing her family too.

 

When she was released from hospital I expected life to return to normal.

It wasn’t meant to be.

 

The next day she called me. 

She felt unwell. 

I went to her. 

I took her back to hospital. 

She was re-admitted. 

 

She was treated with intravenous antibiotics to fight the infection. 

Within a few days, she was better and able to return home again. 

 

Twenty-four hours later, the same scenario was replayed; sick, hospital, IV and home.

Unbelievably, it happened a third time.

Again, exact same scenario. 

When she returned home this time she was desperate to be there. 

She had been in hospital on and off for almost a month. 

She said I was her hero.

She said she owed me.

She joked, that she would not call me for a few days.

 

That very evening, when I heard the phone ring, I just knew something was wrong.

She was crying. 

She was apologizing. 

She was desperate for me to come over.

 She was sick again.

 

As I got ready to go I prayed I would not find her on her bathroom floor...

I found her on her bathroom floor.

I stood aghast looking at her. 

 

‘What the hell was happening?’

 

She was nauseaus.

She was scared.

She was beside herself with frustration. 

 

Her daughter was in bed, but, awake with worry about her Mom. 

I went and comforted her first.

 

She told me she had heart burn.

She was adamant; she was NOT going back to the hospital.

I was terrified. 

I knew I needed to stay calm for her, but, I knew she was in trouble. 

 

I watched her sitting in the chair, willing her body to fix, willing the pain to leave.

I went to the bedroom and watched her daughter sleep. 

 

It occurred to me that I was standing between two people whose heart could stop any second.  

 

She grew sicker and sicker. 

She had a fever. 

She knew she was in trouble too. 

She submitted and went back to the hospital.

 

I was so relieved when the paramedics arrive. 

They took over her care. 

I arranged her daughter’s care.

I left making promises her Mom would be ok. 

I hoped that was true. 

 

My brain raced en route. 

It was all in my lap. 

I was fully responsible. 

I was nauseous.

The disease.

Her health became an issue.

Jaw surgery was only the start.

 

Carpal tunnel surgery was done on both of her wrists at the same time....

I have a picture of her naked in the tub with her arms wrapped for protection over her head!  

It was during a fun time in her life. 

She was prepping for her wedding and now was rendered useless as she couldn’t do anything. 

I wrote her invitations for her and complained the whole time!

 

Periodic, but, intensely painful stomach attacks lasted for a decade as the doctors tried to diagnose.

She had gull bladder surgery.

She had a hysterectomy.

Finally, she was diagnosed with Crohns disease.

Inevitably, a bowel resection became necessary. 

 

When she was sick I was on call. 

I would take care of her babe in her absence. 

 

Crohns cared not about time of day or full schedules. 

She was always so thankful.

‘What would I do without you?’  She would ask.

 

Her health made her weak again. 

Her health gave me the power back.

I didn’t want it. 

It came with too much responsibility now. 

 

I never told her that.

Not once. 

The worst and the best of times.

We settled down.

Her baby’s every new day taught us to relax.

 

Loving her was so easy. 

She gave us so much joy; we were allowed to be happy around her. 

 

By the time my son was born we had a grip on family gatherings!

Our kids loved each others’ company. 

They redefined the term, ‘cousins’.

Being her Mom was hard work.

I tried to help out when we were together.

 

I have a photo of them, her daughter, her leg casted, elevated on a stool,  with one of my kids on either side of her.

All three in the tub together; naked and shiny, covered in bubbles.

All three of them with huge smiles on their faces.

Happy kids. 

Exactly how a kid should be. 

 

Time with my kids gave her daughter relief from her real life. 

She thrived on the socialization they provided her. 

She regenerated on the acceptance and normalcy they gave her. 

She was able to forget about hospitals, hurting and not feeling well when she was with them. 

 

They also exhausted her. 

We had to plan our times together.

 

Waiting rooms are the most boring places for any child.

Her daughter and I made up a game.

We played it at every appointment...we played it a lot.

Reader’s Digest’s, Definitions, became our game board. 

 

I was the preferred person in the waiting room.

We would get giggling.

We loved to be silly together.

Her Mom, the preferred person for appointments and procedures. 

Fun time was over.

 

It warmed my heart when I heard her laugh. 

If I could make her happy, even for a brief moment, I was thrilled. 

 

It is human nature to take things for granted. 

Her daughter taught me that time and time again.

Simple things like...shopping. 

Just the word was tiring for her daughter and exhausting for her. 

 

I would take her daughter, back to school shopping.

It was full fledged aerobics. 

It wasn’t for the weak. 

I would do everything I could do decrease the amount of energy she had to use. 

 

Dressing rooms...take it to a lunge. 

 

She would take my kids shopping. 

She would call from the restaurant...’how’s it going? Yeah, we are done! Hee Hee’

It was win-win. 

She always felt bad for not being able to spend time with my kids. 

 

They ‘camped’ at my house.

A.K.A.  A safe holiday.

We worked in a yard sale.

We worked in a bottle of wine.

We worked in a little skinny dippin’.

We worked in some adult fun.

 

We both enjoyed seeing the kids have a good time together.

I enjoyed seeing her relax and enjoy a day here and there.  

Life was hard for them. 

 

The surgeries.  So many surgeries. 

I watched her explain to her daughter what the surgeons were going to do.

She would answer all of her questions.

She was always very honest with her...even about the pain she would have following.

 

The more surgeries, the more her daughter already knew.

Like the hospital menu. 

She knew the menu. 

Although we laughed about it...it was the saddest thing. 

 

Only, after her daughter waved goodbye,

After she had disappeared into the operating room...

Would she show any emotion. 

She would stare at the swinging doors and cry. 

 

It became routine.

Pace the room.

Eat licorice.

Check the time.

Repeat. 

 

She would stand completely still when the surgeon arrived.

I would watch her face as they spoke. 

Deep breath.

She had survived another surgery.

 

The surgery. 

The lengthy hospital stays.

Home for recovery. 

The recovery.

 

Her daughter would be back to herself.

She would be a wreck. 

Often sick. 

Always exhausted. 

 

She always thanked me.

She always said she couldn’t do it without me. 

I thought she was the best Mom in the world. 

Her daughter...the best niece.

 

The best and the worst of times.

My baby’s first Christmas...

The.   Worst.   Christmas.  Ever.

 

My, four month old,  baby’s cry caused her, eighteen month old, baby to cry.

 

When her baby cried...

All the adults responded as if 911 was needed.

This chaos simply increased her daughter's upset. 

 

Everyone called her name.

Everyone offered her something.

Drink.  Cookie.  Soother. 

Everyone offered their arms.

Want a sit with me?

Want to go to the moon?

Want this? Want that?

 

Everyone talked at once.

Her daughter was surrounded.

I bet she wanted everyone to SHUT UP!

I know I did.

 

No one said it, but, we were all terrified.

No one wanted her to be upset. 

We didn’t know what might make her heart stop beating. 

Make her heart stop beating....

 

Her babe was cherished.

Her babe was treated like an irreplaceable china doll. 

Her babe was held constantly.

Her every expression...her every movement... her every complaint was discussed or debated and often argued about.   

All the family members were afraid.

They were afraid of her fragility and they were afraid of the unknown.

 

Stressful, doesn’t quite cover the emotion of that day. 

 

My babe was healthy.

My babe was loved, but, not needed by them.

My babe’s every complaint was met with...the stink eye from someone. 

They wanted me to keep my babe quiet. 

 

We caught each other’s eye over the sea of misguided love. 

 

She was so sorry. 

She knew I was hurt. 

I was hurt. 

I was so sorry....

 

Her babe was dying and mine would live. 

 

I cried all the way home.    

The mirror.

The ultrasound results brought me to my knees.

I was defeated. 

 

‘Seriously’?

Children are born missing limbs?

I kept thinking ‘enough is enough’ but, in fact, it was all about me for the first time. 

She had nothing to do with it. 

 

I felt alone and inexperienced. 

It occurred to me, that I did not know how to do this for myself. 

I only knew how to do it for her.

 

I didn’t have to. 

 

She was there for me as she always has been.

The big sister led the shy sibling by the hand. 

She taught me how to cope and she taught me personal strength.

Her dying child taught me thankfulness.

She never put her reality ahead of my heartbreak. 

She enabled me to love my child as she loved hers. 

 

My child also sealed my soul. 

We became a team again – the ‘infamous duo’. 

We were both of Mothers of beautiful girls.

 

The unspoken difference was...my child would live.

The prayer.

No one was anymore excited about my pregnancy. 

She wanted a billboard hired while I was still blushing and secretive. 

I was scared from the get go. 

She knew I was worried.

She knew I understood the genetics. 

Still, she made it all very exciting and positive. 

For me.

Not once did I see a shadow of doubt cross her face. 

 

My internal, silent conflict;

have a baby as sick as hers or have a healthy baby who lives, while hers dies. 

It was overwhelming initially.

 

As I watched her babe sleep...my heart contracted. 

I rubbed my unborn child as my thoughts swirled. 

I was torn.

I was overwhelmed.

 

 

How could I love this life inside of me as much as I loved her  baby. 

 

She was sound asleep...post-op, from an orthopedic surgery. 

The surgery went well, but, the recovery was going to long and hard. 

This babe had to deal with so much.

 

I rubbed my unborn child as my thoughts continued to swirl.

 

No baby should have to be in this place. 

No baby should have to feel pain.

No baby should have to live this way.

 

I rubbed my unborn child...

The tears began to flow.

 

I started to pray.

I am not sure I had ever really prayed before, but, I prayed that day. 

 

I prayed for my unborn child to be blessed with health. 

I prayed the geneticist wouldn’t find a common gene. 

I prayed my child would not be her child. 

I prayed my weakness was understood. 

 

I knew I didn’t have the strength she did. 

 

It was torturous...

I was praying my child not be the child I could see in front of me...

the child I loved as if she were my own,

the child who may not leave this hospital. 

 

I was overcome with guilt and sorrow.

 

I never told her....not once. 

The reality.

I stayed with them as often as I could. 

She was exhausted. 

Every four hours;

She administered life sustaining medicine to her babe.

 

The same drug that was keeping her babe alive was beating her down. 

 

Every day completed was a success within itself. 

Every morning her babe awoke was another miracle.

The doctor’s appointments were endless. 

Three hours drive round trip.

Waiting rooms became living rooms.

Cafeterias became kitchens.

Strangers became friends.

 

The circle of life;

A lull,

A new discovery;

More appointments;

New doctor;

New tests;

New plan;

More worry;

Another surgery;

More training;

Endless costs;

Endless forms.  

Back to a lull again.

 

It never stopped. 

 

She worked outside of the home.

She worked.

Her babe went to school. 

To school.

 

They camped.   

They socialized. 

They laughed.

They loved.

 

She was a role model. 

I admired her incredible stamina.

She handled motherhood with optimism.

She mixed it with a healthy dose of reality.

And always added, an endless supply of guts.

 

Her baby grew as babies do. 

She was her daughter’s hero. 

She made her daughter feel powerful. 

She and her babe completed one another. 

 

Together they were a team. 

 

I was their coach.