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. 

The homecoming.

Her baby had survived against all odds. 

Miraculously, she was able to bring her baby home.

It appeared that babe was born with a strength and determination even larger than her Mom’s.

‘Go home and grow the baby.’  The doctor advised.

The child sealed her soul. 

Her love for her child brought forth a confidence that was to be respected by all who entered their life. 

 

 

The insecurities of her youth...gone. 

The inability to stand up for herself...gone. 

She had a child to raise.

A child to nurse.

A child to love.

 

Nothing would stand in her way.

 

I was no longer powerful.

She had made her own place outside of me. 

She became the leader as I became the cheerleader and supporter. 

 

She taught me to respect her.

She taught me how to love. 

She taught me how to be selfless.

She taught me to be thankful. 

 

I never told her that. 

Not once.