Snap out of it!

The past 24 hours have been difficult.  Last night, I typed the words “I am scared that I could lose her” – I am still terrified, that has not changed.  This morning, I saw that the amazing Alan Rickman died of cancer.  For me, he will always be the wayward husband who failed to see his wife in Love Actually and the man who brought Professor Snape to life in the Harry Potter series.  In an earlier post, I shared that my Harry is named for J.K. Rowling’s character.  When I heard the news, all I could think was whether or not Genevieve will have the chance to find the magic in the Harry Potter books followed by the wonder of it coming alive before her eyes on the screen.   She is only 7 – there are so many experiences that I still need to share with my girl.  I cannot lose her.

Today, I wanted to give in to the darkness.  It was painful to turn off the ignition and leave the comfort of my heated seats for work.  My focus was gone and I wanted nothing more than to return home, crawl into bed and pull the covers over my head.  I didn’t want to talk, I didn’t want to text, I didn’t want to communicate – all I wanted to do was hide.  Somehow I got through the day including working with a new employee, finalizing the headcount for a workshop next week and analyzing pages of reporting on internet, phone and floor leads for 34 different locations.  If bed was not an option, work made for an excellent distraction.

Friends and family made it difficult to give in to the pain as my email and FB page was flooded with Team Genevieve pictures.  From as far away as family in Taiwan to the beautiful smiling faces of the girls from Harry & Genevieve’s dance class and past co-workers that became friends joining in.

So tonight – a bit more hiding from the world in a hot bath, with a book and maybe a glass of wine.  Tomorrow, I will snap out of it.  I have a to-do list at work that is a mile long and a weekend of making memories planned.  While still scared, I cannot let the fear paralyze me and prevent me from making the most of every minute.

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Team Genevieve – since 2008

 

 

 

 

May you find peace in writing. . .

 

BsIdtgyCYAItZq5    Like mother, like daughter?

Hearing from your child’s teacher that “she was pretty effected by the news” of her surgery date is difficult.  15 days still to go and we are both clearly struggling.  Genevieve is working on a book about it at school and I pour out my thoughts here.

While I want to continue to encourage her to come to us with her questions, I do not want to push her into stressful conversations that she is not up to having.  Walking that tightrope, letting her take the lead and reaching out to her now and then to see if there is something on her mind.

Today was a day that I decided to push her a little . . .

M:  “So, what are you writing in school?  Does Mr. Berg have you working on a new book?”

G:  “How do you know?  I am writing about me!  I am writing about November.”

M:  “So, Genevieve, you are writing about your cardiac catherization?”

G:  “Yes”

M: “That’s great, do you want to tell me about it?”

G: “Not now, I want to know how you know?  How do you know what I am doing?” said with that curious smile.

I am going to let her think it is magic – moms just know.

All that matters to me tonight is that she is smiling and happy.  I am thankful that her teachers are encouraging her to pour her feelings out on paper.  My hope is that she finds the same peace in writing that I do.

 

 

I don’t feel that I have encouragement

Bonus post . . .

After a long day of fun with friends and family in Connecticut, I was really hoping for a quiet night at home.  Unpacking, preparing for an early morning meeting . . .Genevieve had other ideas.

I should have known that it was coming.  After finding out the date of her surgery this morning, she has had enough time to process it and now is the first chance she has with her mother and father alone to share her thoughts.

Why do I have to do this?  I don’t want to do this.

Why do I have a birth defect?

I am not ready.

I am scared.

Is there a cure?

I don’t feel that I have encouragement.

That last one stung.  We have been through all the other questions before and had answers to reassure her.  This was a new one – so we reminded her that she was not alone – that she will never be alone.  She has us, her twin brother, her grandparents, her family, her friends, all of our friends and co-workers.  She has friends of friends praying for her.  All those in my world are encouraging her.  People that have heard her story have joined Team Genevieve.

Now that she is back in bed, I realize that she is absolutely my daughter.  With all of the world pulling for her, for us – and my lovely friends creating the spin off “Team Tina” with inappropriate humor and lots of booze . . . I realize that I am guilty, too.  There are moments when I feel all alone and don’t feel that I have encouragement.  That is completely on me.  So please be patient and don’t give up on me as I continue to work on learning to ask for help, for reassurance, for a hug.

16 days – it’s going to be a rollercoaster from now to then and beyond.

 

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.

 

 

 

Enough

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Instead of resolutions, many of my friends are selecting a word for the year – something to focus on, to embrace, to live by and perhaps to instill change for 2016.  I have thought a lot about whether or not I have a word – a handful come to mind . . . blessed, hope, pray, peace.  There are other words that I don’t want to focus on . . . struggle, sleeplessness, pain, fear, wrecked.

Recently, “enough” keeps popping up in my life.  So, perhaps that is my word for 2016.

I have  had “enough” – there are many vivid moments over the past few years where both professionally and personally, I may have backed down and sacrificed more than what was necessary.  Moments when I should have put my needs first – or at least not last.

Then there are moments like today where I question whether or not I am a good mom and if I am doing enough.  There are days when finding the balance between work and being able to attend school events like award ceremonies or concerts is difficult.  Knowing that I will be taking time off of work when Genevieve has her surgery in a few weeks has caused me to focus more on my job now.  Projects that I need to complete so that I can be present for her with a clear mind.

There are only so many hours in a day and decisions  need to be made. While my children always come first, there are times when that means choosing my career so as to have health insurance and a paycheck for all that they require.   I strive to make the most of our time together outside of work.  Making memories.

Yet, I still fall victim to those moments of doubt.  Did I choose right this time?  Am I doing enough?  Will they look back and see that it was always for my Harry & Genevieve and that I did my best?  Will my best be good enough?

I am teary eyed from all the amazing support from friends and family and the constant reminders that they think I am a good mom, that Genevieve will be fine and that we are doing right by Harry and not letting him get lost in the shuffle.  Still, I believe it needs to also come from within – so for 2016, I want to be enough.  I need to remember that I am only one person, that I am doing all that I can and that it IS enough.  Not perfect, maybe not everything but enough.   Is it as easy as saying that I am enough?  I wish – if it was, then I wouldn’t need to find and focus on my word.

Just me – a work in progress, working on believing that I am enough in addition to a number of other things.

Evanescence – Good Enough

 

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.

Is there no other choice?

I have an entire other blog post completed and saved – I was ready to post it when Genevieve came out of her room, unable to sleep and said the words that break my heart every time, “I am worried about my surgery.”  No matter what time it is, these 6 words make my world stop.  Al and I talk to her until she feels a little better.  We cannot eliminate the worry, all we can do is help her to find enough peace to go back to sleep, to rest and to continue on being a child until the next time she is overwhelmed with the worry.

“Why do I have to have surgery?  I know the good choice is surgery and the bad choice is to be ill, but is there no other choice?”

My Genevieve, I wish there was another choice.  Trust us, we would not ask you to do this – we would not ask you to have to go through something so big if there was another choice.  We have turned to the team at Boston Children’s Hospital – some of the very best doctors and nurses in the world – and everyone we know and so many people that we don’t are praying for you.

You are my daughter – an obsessive researcher.  I found sanctuary in a card catalog, books and spent a decade working in a library.  You have made friends with Siri.  We are here for you and we will help you to learn more about your diagnosis, about your own heart.  Then we will help you to understand that you are not Aortic Valve Stenosis and Aortic Valve Regurgitation.  You are 7 years old, in the second grade. you are a twin (yes, the older twin), you love to dance, write and spend time with your friends.  You are our Genevieve – beautiful, strong, and confident.  Multiple friends have told me that you sparkle – to me, you are magic.

There is an army that stands beside you – so while this is big, you will not go through this alone – Team Genevieve.

 

 

 

 

“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.

 

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.