The Bright Side

After some recent posts and some really difficult days, I have been asked by multiple people to find the positive, to be positive, to write something positive.

I know that there are people in my life that are worried that the anger, stress and yes, the negativity may be spilling over onto Harry & Genevieve.  While I am far from the perfect mom; I do know that I am a good mom.  I would do absolutely anything for my babies.  I will not lie to them so they are aware of what is coming in January.   While they can sense the stress and tension and this is also hanging over their heads; for the most part they are just being 7 year olds.  Excited for Christmas and school vacation.

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The positive is their infectious laughter at the dinner table.  One gets the other going and then we lose all control.  It’s when Harry cracks up because the player on Wheel of Fortune is named “Dick” – shouting out “you know like dick” as he laughs hysterically and points to himself in the way that 7 year old boys love their silly potty humor.  It is when Genevieve decides to wear a Star Wars dress to school because she earned a “no uniform coupon” for good behavior.  It is the confidence to be the talk of the school twirling around in her storm trooper tutu against a sea of navy blue pants and white polos.  In this, I know that we are doing something right.

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So, yes – I am still struggling with finding the Christmas spirit.  That has not changed.  I know that I do have so many positives in my life and I make my way through the bad days because Harry and Genevieve are my everything.   Blessed and we have got this.

 

My own hellish Groundhog Day

This should probably be entitled “The F Word Part 3” . . . given the rollercoaster ride that we have been on, I am sure that post will be coming soon.  So tonight – let’s go with my own hellish Groundhog Day instead.

The dreaded 355 pops up on my iPhone.  I hate that number.  I would rather see 666 as that would be my work in Somerville or my parents in Newington.  It is never good when they are calling you a month out from her surgery day and just before Christmas.  No message left to return – it is them calling to talk to me.   Iris – of course, it is Iris from scheduling.  I knew why she was calling and I could tell by the tone of her voice that was prepared for me to go off on the phone.   Somehow, I managed not to.  One slightly sarcastic tone about how this is the second time we are being rescheduled due to vacation days and a conference.  Shouldn’t these things have been on their calendar?  I guess not.  So – the new date is January 26th for pre-op and surgery on the 27th.  Now that I have put it in writing and moved it on my calendar that syncs to my laptop, my phone and my iPad, I am waiting to see if the universe decides to see just how many times we can repeat this cycle before I completely lose my mind.

That losing my mind stuff – I may be there.  Going back through the list – call my parents, the insurance company, the pediatrician, the school, the school psychologist, my work and so on  . . . I know the list by heart at this point.  Returning to my car to hide, there is no crying at work and I just can’t keep it together anymore.  I’ve done this all before.

What little Christmas spirit I was able to pull together this year is gone.  I will put on the smile for Harry & Genevieve and I will do everything in my power to give them the very best Christmas ever.  Outside of that, I just want to hide, pull the covers over my head and not talk to anyone.

This fucking sucks – ahhh, yes, there is the F word.

 

 

 

 

Hope

Thanks to the Rogers Family, today, I was able to offer Genevieve an experience similar to that which has kept me going on this CHD journey for the past 7+ years.

From the moment we had a diagnosis, I became obsessed with researching her congenital heart defect.  Some of that was a search for parents who have “been there, done that”.  I wanted to see happy children, happy teenagers, happy adults living life.   I needed hope; I needed to believe that she had a future and she would walk this Earth with purpose.

Making those connections, both online and in the real world became a source of comfort for me.  Sharing the milestones, seeing their children grow, start school, playing with friends – most of all smiling.  All of the happy beautiful smiles.  One of the connections that I made online was Valerie Rogers.  I followed her daughter’s surgery and delays due to a shortage of blood products.  I watched her family and community rally around her to make a difference in the lives of many through awareness of congenital heart defects, the mission of the American Red Cross and the importance of blood donation in general.

http://www.redcross.org/news/article/Blood-Donors-Needed-to-Help-Hospital-Patients

Today, I was able to meet Valerie, her husband Alan and their beautiful daughter Jacqueline in person after exchanging numerous messages back and forth online.  With their help, I was able to offer Genevieve hope – the chance for her to see a future beyond her upcoming surgery in January.  She met someone who has gone through open heart surgery at a similar age and is now smiling.   Someone that is going to school and loves to dance.  While we are all focused on January 14th, today, I was able to offer Genevieve comfort in seeing the potential for life beyond that day.  No limits, no restrictions.  Living happy.

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Genevieve and her heart buddy, Jacqueline.