All that cannot be seen . . .

I cannot remember where I saw this . . .most likely a quote from someone’s page on Facebook:  “The healing process is not linear”.

Recently, I have come to the realization that Genevieve is not the only one healing.  I am on a rollercoaster of healing that is anything but linear.  I have the highs when life starts to feel normal – when I can have a moment to smile, to focus on the parts of me that are not “mom to Harry & Genevieve” and the lows when she spikes a fever, when she tells me that she feels dizzy and her chest hurts.   She can make my world stop with just a few words.

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I found this shirt on Zulily for her – it says “Though she be but little, she is FIERCE” from Shakespeare.

This is my little girl, she is fierce.  She has gone through everything that we have asked of her and more.  She battled back, kept up with her school work and couldn’t wait to return to her class.  Yes, healing is not linear – we are still working through sleep issues and other struggles.

 

Then there is me – I am continuing to wage war with fear.  Fear of what I cannot see – that which resides below the scar on her chest.  Is her heart healing?  Is the valve working as her cardiac team designed?   Why does she have a heart murmur still?  It is easy to look at the girl who dances around the house with more energy than her “heart healthy” brother, Harry and to say that she is fine . . . except, looks can be deceiving.

Boston Strong

Tomorrow is Patriots’ Day celebrating the Battles of Lexington and Concord – the first battles of the American Revolutionary War.  It is also the day of the Boston Marathon.  Tonight it is impossible to not reflect on it as I prepare to celebrate the power, strength and accomplishments of the runners at a work event right on the finish line.

The Marathon has been part of my life in different ways dating back to 1997 which would have been my first one – not a runner, definitely not as a runner . . . my first as a resident of this amazing city.  I worked in the cosmetics department at Lord & Taylor on Boylston Street.  I remember fighting my way there walking blocks because the closest T station was closed.  The store was a ghost town in the morning, allowing the employees to wander down to the windows to see the runners cross the finish line.  As the day went on, we would start to see people coming in to use the bathroom, some of the runners would walk through to warm up wrapped in their foil blankets.

Eventually, I left lipsticks for cars as I entered the automotive field.   For many years, my biggest struggle was getting to work on Commonwealth Ave. as traffic was detoured and various roads closed.  Then it was 2013 – the year that changed Boston – the year of the bombings at the finish line that killed 3 civilians and injured hundreds of others.

Harry & Genevieve sheltered in place in the Blue House with Al in the days following as the manhunt was on for the bombers – our lives had changed and innocence was lost.  From 26 weeks into my pregnancy, I worried that Genevieve’s heart would fail her – this thought still keeps me up at night.  On April 15, 2013, I experienced a powerful new fear of the world outside.  Co-workers and friends were on the finish line, while none were hurt, it was way too close for comfort.  A friend told me that after the first explosion, he found himself walking towards it as he thought it had to be fireworks to celebrate the accomplishment of the runners.  Then the second bomb went off – he didn’t know to run in the other direction.  Terrorism was a story on the evening news and now it had come to our home.

While I cannot restore their innocence, we have replaced it with “Boston Strong”.   So may Genevieve continue to be “Team Genevieve” strong on the inside and Boston Strong on the outside.

Battle Wounds

“I think scars are like battle wounds – beautiful, in a way. They show what you’ve been through and how strong you are for coming out of it.” – Demi Lovato

Recovery continues to be a journey for Genevieve.  The rebuilt Aortic Valve is hidden away in her chest while the scar of her incision is quite visible indicating some of what her body has been put through – some of what she has had to endure.

Since her first surgery just weeks before her 2nd birthday, the scar has been a badge of courage.  It meant that Genevieve was my fighter; that she had survived.  She has small dimple like marks on both thighs where she had a cardiac catherizations at a day old, 14 months old and most recently at 7 years old.  Seeing it when she has a bathing suit on makes me smile – they are not obvious and very few people would know what they are by looking at them.  I know and for me . . . it is reminder of her strength.

On most days, G gives off an air of confidence.  She is drawn to mirrors and any other surfaces where she can see her reflection.  Outside of the “bad hair days” (yes, even at 7), Genevieve will tell you that she is pretty as she dances before the glass.   Her scar peeking out the top of her shirt or leotard never seemed to bother her.  Pre-surgery in January, her previous scar had faded to a white line, it was a part of her as far back as she could remember and it didn’t seem to impact her in the slightest.

This new scar is different – she remembers getting it, it is an angry pink/red line that is healing and there was an internal stitch that looked like fishing line poking out as her body rejected it and she could feel it brushing against her top.  She is aware of this one and she knows the appearance of her chest before and after.  Most days she is fine but her clothes keeps it out of view.

On Sunday morning, we prepared for dance pictures – blue eyeshadow, pink cheeks, red lipstick and hair back in a bun . . . ivory recital tutu with lots of sparkle.  All I saw was my most beautiful girl growing up way to fast.

Genevieve saw something else, with sad eyes, she exclaimed, “Mommy!!! My scar shows in my dance costume!”

In that moment, my eyes filled with tears and my own heart felt as if it was breaking.  “Genevieve, your scar means you survived.  You are beautiful and it is beautiful – be proud of it.”

Slowly, her smile returned and she sparkled in her photos.

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Genevieve all dolled up for dance pictures.

An emptiness in the blue house

On the Saturday before Easter, we said goodbye to Mr. Cat – he has been with me for 16 years – my first baby.  I lived with him longer than my husband.

From the first day, he was my cat.  My roommate at the time picked this giant orange tabby cat while I had my eye on a smaller gray one.    As usual, I gave in and became the crazy cat lady to Mr. Cat.  From the early days to his very last days, he frequently slept at my feet with his head on my ankle.  After a long day at work, he would curl up on the couch next to me while I caught up on email on my laptop or just watched TV.  I miss him – there is an emptiness in the blue house.

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He adored the twins and even when they were infants, he would sit on the floor between them as if he was checking to make sure that they were being well taken care of. . . over the past year Genevieve may have started to replace me in his heart as he would nap at the foot of her bed and brought her a gift of a dead mouse.  He kept her company during her recovery and perhaps, he stayed around longer to make sure that she was going to be okay before leaving us.

Saying goodbye was a family affair.  After nearly a week of him barely eating and being lethargic, we knew it was time to take him to Angell Animal Medical Center.  We tried to prepare Harry & Genevieve for what we knew in our heart would happen.  Genevieve kept asking me  if they were “good doctors” – I struggled with that a lot.  Angell is known as the place you bring your sick pets – their doctors are considered among the best – much like Genevieve’s team at Boston Children’s Hospital.  At the same time, we knew that it was unlikely they could save our beloved cat.

While being examined, Mr. Cat went into cardiac arrest and had to be rushed from the room to be moved into an oxygen tank.  All color drained from Genevieve’s face – I thought for a moment that she was going to pass out and that we had scarred her for life. Thankfully, he rallied back for a moment and we were able to offer him a proper goodbye, holding him as they adminstered the sedative and without any further fight, he left us.

I am still not sure what this will mean for our family long term – especially Genevieve as she works through the knowledge that not everyone survives no matter how good the doctors are . . . .

It is a tough life lesson especially for my heart warrior.