We walk this story together

Like so many other recent moments, Genevieve has once again pushed that time line.   We will not lie to her when it comes to her heart – this is her story and she owns it.  We walk this story together – it is hers and she will not travel this road alone.  We have made choices on child-appropriate language and we decide when and how much to share.  Until life happens and we are pushed into a conversation that we are not prepared for.

Since we set the date, we have told Genevieve that her surgery would probably be in January barring any delays and that we would talk about it more as it got closer.  Back in November, she realized that BCH on the calendar stood for Boston Children’s Hospital and she found the date for her cardiac catherization.  In December, she started lifting the pages to take a peek at January in the hopes of finding out when her surgery would be.  While the date was marked with a symbol, it was less obvious and we managed to avoid the specifics.  Until this morning . . .

I love my parent’s house – it will always be home.  Sitting around the kitchen, drinking coffee, my mom making breakfast while Harry & Genevieve dance around and fill the room with non-stop chatter and laughter.  It was just what I needed until Genevieve spotted the calendar “Genevieve’s Surgery” in my mom’s perfect penmanship in the box for January 27th.   So now she knows.

With wide eyes and a small knowing smile . . . “my surgery is January 27th?”

I won’t lie to her about this. Yes, Genevieve, your surgery is currently scheduled for January 27th with a day of pre-op on January 26th.  There is still the possibility for delay . . . so my little busybody, it could change but that is the plan.

In typical Genevieve style – she is taking it all in stride.  Caught up in the thrill of knowing something that we were not yet ready to share with her.  It will probably hit her later – my guess is when it is dark and she is in bed.  Make no mistake, she is my girl and so much tends to come to the surface late at night when all is quiet.

Harry was kind enough to do the math – 16 days away.  My analytical boy.  He is working out the details in his own head, making sure his grandparents know that he is expecting them to be there to support and care for him when the focus turns to his sister.

As to me – feeling emotional, lost and just a little wrecked.  Par for the course.

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Genevieve “You can’t scare me, I battle CHD” and Harry keeping the beat for his sister.

 

 

 

Just Keep Going

When it is quiet, I begin to feel lost.  This is when the tears well up in my eyes, my heart starts to race and the anxiety sets in.  I am paralyzed, focused only on what could go wrong as her surgery date gets ever closer.  This is when I start to shut down and start building those walls to isolate myself from the world.  I know what I do when I am in pain, just not sure that I am self-aware enough to prevent it.

At the moment, the only thing that seems to work is to just keep going. Doing my impression of Dory from Finding Nemo, “just keep swimming”.  Play dates, lots of coffee, an endless list of work projects, plans with friends for both myself and for Harry & Genevieve.  My calendar between now and January 27th is as full as it has ever been.

After the children go to bed, I am sometimes overwhelmed by the quiet.  This is when it becomes difficult to just keep going.  This is when I struggle to find something to keep my hands busy.  Facebook, Words with Friends, Candy Crush and this blog help some.  Focusing on upcoming projects for work with Outlook, Power Point and our CRM open on my laptop provides some distraction.  Messaging friends back and forth prevents me from building the walls too high.

When I find myself alone and can feel the panic start to set in, I find myself drawn to lists.  I find peace in planning.  I have packed and repacked my own bag for the hospital almost a dozen times.  It is me in a bag . . .

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My amazing hand-made heart bag from my cousin Mark and his wife Cara. A novel because Al has a talent for finding books for me to read.  Although I love my Kindle app, sometimes you just need to physically turn pages and a coloring book from my friend Jen to keep my hands busy.   Slippers with non-skid bottoms to walk the halls, my Keep Collective necklace designed by my friend Amanda to represent healing, strength, protection and love.   A notebook to jot down questions and information from when they do rounds and perhaps most importantly, a pack of Kleenex.   I know that it is okay to cry and when I am done, I will wipe away the tears and just keep going.

 

My most wonderful boy

So much of my writing is about Genevieve and how we are processing her upcoming surgery.  Tonight, my thoughts are focused on my son.  My darling Harry, who is also being asked to handle something so big.

Harry is an incredibly strong child.  He is a true gentleman allowing Genevieve to take out some of her frustration on him.  There are moments when she is angry and we find her lashing out.  She will back him into a corner with her hands curled into claws as she grabs at him, yelling at the top of her lungs.  While all sorts of things set her off, I know that the real reason is that she is struggling with what is happening and Harry is an easy target.  She has enough control to not lose it at school so she bottles it up and bursts when she is home.  Harry lets her.  He doesn’t fight back and even when I tell him that it is okay to push her away and remove himself from the situation – he doesn’t.   Frequently, he allows her to get her anger out and it is usually Al or I that break it up.   Sending Genevieve off for a time out to breathe, self-talk as she is working on at school and to think about appropriate behavior.

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Harry at Edaville Railroad

I worry about Harry.  He is my sensitive child that feels things so deeply.  Sad scenes on TV and in movies will bring tears to his eyes.  There are moments when he will become quiet and you can see that he is also hurting.  Unlike Genevieve, he doesn’t come to us quite as often to talk and share what he is feeling.  Sometimes we need to drag it out of him and even then, he will deny it when I can see the truth in his brown eyes.  At 7, he has the strong silent type attitude down.

We are doing all that we can to see that he is supported during this time.  We remind him that we are here to talk.  We make sure that he has things that are special for him – a baseball clinic, his own time with us and the occasional small toy or other treat.  My parents will be here to fill in the gaps when Genevieve is in the hospital and even then – outside of the day of her actual surgery – my goal is that either Al or I will be home to have dinner, put him to bed, get him up in the morning and have breakfast.  Being away from his twin is hard enough and I do not want him to feel that he is losing his parents, too.

I will not allow my quiet boy to become lost.

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

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.

 

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.