Exposed

A few blog posts back, I wrote about struggling with “writer’s block” as I tried to compose a piece for our company’s newsletter.  While so much of what I share here seems to flow naturally, this was not just writing for me. This letter was to thank and honor the amazing people that I work with every day.  While it took some time, I finally got my thoughts out on paper.

Today, that piece went out to all the employees of my company and to every E-Mail address in our client base.

Under Our Hood – December 2015

Until I saw it come through my E-Mail, I didn’t realize how big this was.   I didn’t realize just how exposed I would feel having this many people – the majority of which are strangers – read a few paragraphs about my family.   So many of my co-workers reached out to me – some knew about Genevieve, others were just learning about her journey.  As the day went on, some of our clients started reaching out.  The majority of the messages were supportive including one from a doctor at Children’s Hospital who said that he would check in on us while we are in-patient in January.

One month from today is her surgery.  All of this is leaving me feeling rather vulnerable.  I have no regrets and would write the article again word for word – it just feels like a lot tonight.

 

 

 

The Ripple Effect

Genevieve’s surgery is being delayed a week.  From January 14th to the 20th.  On the surface, it seems like it should be no big deal.  One week later, one more week of school, dance class, CCD and regular activities.  So, do I believe that these things happen for a reason?  I don’t know.  My faith has been rocked to its core and I have no idea what I believe.  This is all a rollercoaster and every time I think that I have got it covered, that I have started to restore some balance . . . something happens – tremendous highs and intense lows.

Chaos.  Despite the sleep deprivation, I was doing great this morning.   On top of my “must-do” list at work, I was on the phone with the doctors and insurance company working out the referrals and E-Mailing back and forth with the school regarding at home tutoring.  The ultimate multi-tasker, I had it covered.  Then the mysterious Iris from scheduling at Boston Children’s Hospital threw a rock in my pond.

It is the ripple effect – moving her surgery just one week (of course, that is assuming no other delays, no more critical cases and a perfectly healthy child) disturbed the calm surface of my life.   More phone calls to the insurance company, the pediatrician, the school, my boss, my parents . . . working my way back through the list changing the dates.  Is it a big deal?  Probably not.  In the grand scheme of things, we will get it done.  What choice do we have?  We always get it done.

It is the emotional ripples that I am struggling through.  It takes every bit of my energy to get out of bed in the morning, put a smile on my face and get through the day.  Blinking back the tears multiple times a day. Finding the strength to be reassuring to Harry & Genevieve and to believe it will be okay.

While I am sharing our journey publically, I write for me.  Some of it is not pretty, happy and optimistic.  It is angry, fustrated, dark, sad and overwhelming.  I can feel myself disconnecting and shutting down tonight.  I thought I was on top of things, that I was doing well . . . and now I am not.

No apologies – just me.

 

Writer’s block

Dear Blessed Heart Blog – I love you and could write for hours.  So many thoughts swirling around my head that need to fly out across the keyboard and onto the screen.   My journal made public.  Thank you to all that come to view my posts, share them with others and just support me in this endeavor.   This is my outlet, my therapy as I process the next steps in Genevieve’s heart journey and my life in general.

I mean it -I could write here for hours – the thoughts in my head seem endless.   Unfortunately, tonight there is another assignment calling out to me.  I volunteered to write an article for our company newsletter.   It is a follow up piece to one that I did 5 years ago.   Yes, I know – there is more than enough on my plate without volunteering for more.  I just can’t resist a challenge and I really do love what I do.

Let’s go back – 5 years ago at this time, Genevieve was fully recovered from open heart surgery.   She was off all medications and had no restrictions.   We were ready to celebrate Christmas and looking forward to the new year with our 2 year old twins.   My company had made the list of the Boston Globe’s Top Places to Work for the second year in a row.  As they say, life was good.

Present day, we made the list for the 7th year in a row.   My company is still a great place to work with amazing benefits that completely take away the worry as to how we will pay for Genevieve to receive the best care from some of the best doctors in the world.  Yet, I am struggling to find the words to put on that paper to share with our clients.  There is a big difference between the euphoria of recovery versus the anxiety of preparing for surgery.  So if you have the cure for writer’s block, please share in the comment section.  I could use it right about now.

I know it will come to me – I am good under pressure and I love a deadline.   Monday morning – still plenty of time.

 

And the Bad Mommy Award goes to . . .

I love my job (most days) – I work for an amazing company filled with fantastic people that truly care about both my personal and professional success.  Competitive compensation, room to grow and great benefits that alleviate the worry of how we will pay to have Genevieve treated and seen by the best doctors in the world.

Sounds pretty good, right?  Except that I work – and I work a lot. Hours in traffic getting to where I need to be, hours in the dealerships going from place to place and frequently more hours at home catching up on E-Mails and working on reports and projects after H&G go to bed.  This is what I do – some of it self-imposed as I am a perfectionist when it comes to meeting presentations and designing training classes.

All of this leads to the fear of being the bad mommy.  Missing Harry receiving the “Kindness” award at school because there is a work event that I cannot skip – thank goodness for smartphones so that I could catch the replay at night.  He is feeling a little lost with all the attention being given to Genevieve and I am not sure that I am doing enough to see that he also knows that he is loved and special.

Fear of being the bad mommy because when the school nurse calls to say Genevieve is in her office complaining about leg pain in the area of her catherization, I talk my daughter into staying in class for the rest of the day.  She has missed 3 days and will miss many more when she has her surgery.  I need her to be in school now if she can.  Thankfully, I guessed right – she was calm on the phone, exuded a bit of the sass and attitude that I have come to know when she just doesn’t want to do something.  She was fine to go back to class and stayed the entire day and for the afterschool program.  I did give her the “out” – if you can’t, then go back to the nurse and she will call me and I will immediately come and get you.  Oh, and if you are in too much pain to stay in school then we will be off to the doctors to be checked out – she was not too crazy about that idea but did throw out a defiant, “FINE – let’s go to the doctor!”  It was the mother daughter battle of wills – I won this time.   My Genevieve is tough, was able to go back to her 2nd grade classroom and ultimately had a fun afternoon of learning with her friends.

I am fortunate that my friends and family frequently remind me that I am a good mom.  These feelings of doubt do not come from the outside but from deep within myself.  The constant juggling act – my life is a Lexus slogan – “the relentless pursuit of perfection” in everything that I do.

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