Putting the New Year on Pause

Here I am – struggling – AGAIN.  I can go from completely wrecked to strong and confident in the blink of an eye.  From tears and completely exhausted to all smiles and over-caffeinated.  I am beginning to think that Starbucks may be a gateway drug.  I am sorry to my friends and family as I know this rollercoaster of emotion must be making you crazy, too.  So, thank you for not giving up on me.  The check-ins, messages, texts, girl’s days out, play dates and phone conversations mean the world to me and help to bring me from the darkness into a place where I actually believe that we can do this.

Today on New Year’s Eve, I am bombarded with the messages of hope as we head into 2016.  While I am not one to make a lot of resolutions, I am a planner – I obsessively research and map things out.  I don’t need New Year’s Eve to set goals and make plans – any old day will do just fine as I continue to move forward. Always a work in progress and always pushing forward.

Except that this year, I am struggling with it all.  My work calendar is as busy as ever with month end numbers, year-end reporting, and meetings with our vendors, goal setting for 2016, training sessions and more.  My life calendar is filled with activities like movies (Star Wars – finally – on New Year’s Day), Beauty & the Beast at the Boston Opera House, parties, play dates, dance classes and CCD.  I am doing my best to keep busy and make memories that will carry us all through her surgery and recovery.  It is the black hole on my calendar that haunts me.

January 27th.  Surgery.  I know that she will be in-patient for 5 days to a week and then she will be home recovering.  During that time, my calendar says only “Harry & Genevieve”.  Seeing that my son does not get lost and seeing that my daughter has all that she needs to recover and get back to life.

This is not how I wanted to start my new year.  I do not want to place my daughter in the hands of her surgeon and give him permission to stop her heart.  I just want to break down and throw an epic temper tantrum complete with foot stomping and screaming obscenities at the universe.  It is just not fair said in the adult version of Genevieve’s most whiny voice.  So, I am placing the New Year on pause.  I would say February 1st except that I may still be sleeping on a blue recliner at my daughter’s bedside as the monitors beep . . . so let’s say March 1st.  At that point, I hope to be ready to start 2016 with a healthy family that has returned to our version of normalcy.

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So while I put my New Year on pause, I still wish you a very Happy New Year!

The Power of Prayer

Hearing your daughter’s name called as part of the prayer intentions at Church is a humbling experience.  She is sitting beside me, she knows that her name is called and from the outside she appears to be a healthy happy child.   As the entire Church prays, I fight back the tears and place an arm around both Harry & Genevieve.   While we have put our faith into our team at Boston Children’s Hospital, prayer couldn’t hurt.

This is First Communion year for my babies.  Genevievie has embraced prayer and shyly will tell us that sometimes she prays for herself, for her health.  Another teary moment, my dear baby G, I have the same constant prayer for you.

Daily, I have people near and far telling me that they are keeping my Genevieve in their thoughts and prayers.  A candle has been lit at the Notre Dame Grotto in her name.  Friends have shared her story with their pastors, sent me Bible verses and reminded me that we do not walk this path alone.

So, while I do not believe that we will experience a miracle that will heal her heart, I pray that God will guide her surgeon’s hands.  That she will feel the love and support when she is scared, when she is in pain and as she recovers.   I also pray for myself – that I will find the strength to support both her and Harry.

I am so thankful for all our family and friends that constantly make sure that we are not alone.

 

May Our Lord surround Genevieve Norton with His peace. We pray that God will guide the surgeon’s hands during her second open heart surgery in January. We pray that her surgery will be successful and that she will be granted a full recovery. May God be with her family, especially her twin brother, Harry, and give them the strength to continue day by day.
God bless Genevieve and all her family,
The Notre Dame prayer team

“I didn’t die last time I had surgery, I won’t die this time”

Children don’t always have filters – especially at age 7.  Sitting around the dinner table tonight, my son Harry turned to Genevieve and said, “Can you die in surgery?”

My own heart stopped for a moment.  My daughter was sitting next to me and I looked at her trying to find my own words.  I may still be recovering from the holidays and admittedly, it took me a moment to formulate an answer.  Before I could jump in, Genevieve spoke up.  In a calm and strong voice, she simply said, “I didn’t die last time I had surgery, I won’t die this time.”  Her voice did not quiver in the way that I know my own would.

Harry seemed to accept her answer and did not have a follow up.  Al and I still felt the need to speak and told both of them that Genevieve is being seen by some of the best doctors at one of the best hospitals.  My parents chimed in their agreement.  Both Harry and Genevieve looked at all of us as if to say, “so what?”  The question had been answered and neither of them needed any further declarations.  Our words were just not necessary.

So, now I am the one left teary.  I want to be confident.  I want to believe that she will be fine.  That she will not die.  Truthfully, I am terrified.  I have sat through “consent” and signed the papers and I will be doing it again in January – as I look at the calendar, I can see that I will be doing it one month from today assuming that we escape another delay.  I am well informed on all that could go tragically wrong.  I have also watched friends say goodbye to their own heart warriors – so I know what is possible.

I am blessed with family and friends who truly love us and believe that she will be fine and that we all will get through this.  Over the next month, I will be leaning heavily on them as I am definitely struggling.  They see her spark, her life and they tell me that they know she will do great.  I want to believe – I really do.  There are just some moments that I am overwhelmed by all the thoughts of what could go wrong.

She is my baby girl, my mini-me, my magic child.  I need her to be here.

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Making Christmas memories.

 

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.

 

 

 

 

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.

 

 

 

Lessons learned.

Lessons learned from my grandparents . . .

Take time for yourself.  My grandmother always scheduled lunch for 1PM exactly so that she could watch Days of our Lives and then tell me that I had to wait a half hour before being able to go swimming in the backyard pool.  It was her time in a day spent running errands and taking care of her only granddaughter and frequently the neighborhood kids that made their way to her backyard.

Find joy in the little things.  My grandfather was the happiest man.  Always a sparkle in his eye and just an infectious laugh.  He would come home with bikes and once a 3-wheeler that was someone else’s trash.  It is amazing that any of us grandchildren survived our childhoods.  We were thrilled with every treasure despite the lack of brakes in the days before parent’s required helmets.  With a brother and cousins much younger, I may have taken a few more hits, bumps and bruises than the rest.  Thank goodness for a row of bushes that once stopped me from crashing into the neighbor’s house.

My grandparents would have loved Harry & Genevieve.  I know that my grandfather in particular would have adored them.  He would have laughed and told me that it was ok, let them have fun, don’t be so hard on them.  Maybe it is nostalgia setting in on my grandfather’s birthday, maybe it is something more.  There are moments that I feel them near.  A rocking chair moving back and forth steadily for no reason – my grandfather loved his rocking chairs.   My Genevieve regularly talks about her grandmother Genevieve – I just know that she is looking over her namesake.

I was fortunate to have a great relationship with my own grandparents and am so thrilled that my own children have their Ama, Grandpa, Papa and Grandpa Paul to dote on them.  We are blessed to have our family & friends along with our angels looking out for us.

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With my grandfather – always a sparkle in his eye.

 

Have I got this?

The constant mantra has been “we’ve got this”, “she’s got this” or some variation of it.   Reassuring the world and ourselves that we will get through this – the this being Genevieve’s surgery.  That everything is under control.  I accept the hugs from friends & family, smile and tell them that we are doing well and have it all together.  Honestly?  Right now, I am struggling and I would like to hear it in return.  I need that boost from someone telling me that “yes, you have got this” because I am not so sure.

Dotting the i’s and crossing the t’s – insurance referrals are done, conversations with the school psychologist, the Child Life services at Boston Children’s Hospital.  We have a plan for her pre-op day and admission the next day.  We have been making Christmas – the house is decorated, shopping is done and presents are being wrapped.  These are all the things that I feel completely in control of. . .

It is everything else that weighs on my mind.  As I cross things off the list and have a moment to myself, the doubt creeps in – there are dark thoughts that I am just not ready to put into words.  Things that I know no one wants to hear aloud, but it is still there rattling around in my head. Being in control is lonely and I am not sure that I am appreciating the holidays and time with my family.

Am I supporting Genevieve emotionally?  What about Harry?  Have I done everything that needs to be done, everything that I can do to make this situation a little easier for them?  When do we tell her the date of her surgery?  Should she even know that she will be having surgery in just over a month?  Is this too much of a burden on a young mind?  That ship has sailed, she cannot un-know it at this point.  So back to the rest, am I just screwing up and scarring my children for life?

Despite all the research online, conversations with other parents and with the experts that work with children like Genevieve daily, I really feel like I am just winging it.  Following my heart and praying that I am not making too much a mess out of what is already a difficult situation.

So, do I have this?  I really hope so.

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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.

 

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.