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 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.

 

 

 

 

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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Making Christmas, Making Christmas

Overachiever?  Who me?  Couldn’t be!

Okay, yes I am an overachiever – dating back to childhood.  In addition to the obsessive need to plan and fondness for calendars and check lists, I have this ingrained need to give every task my all.  I have also been known to be slightly competitive and to love a good challenge.

All of these traits have combined into the perfect storm of “making Christmas 2015”.  With Genevieve’s surgery hanging over our heads – still no date yet – I want to do everything in my power to make this year extra special.   While I believe that we do pretty good celebrating every holiday and birthday, this year there just seems to be additional pressure – self-inflicted.

Of course, the universe isn’t making it easy.  Harry came home from school and announced that his friend in the 3rd grade told him that Santa was his mom and dad.  No no no, Harry, you will not do this to me.  There is a Santa and you will believe!  I need you and Genevieve to believe this year – I need this year to be magical and that includes the jolly old St. Nick!   So, I did what any desperate parent would do . . . Harry, if you don’t believe in Santa then you will not get any presents from him!  Yes, I threatened my son with less presents and yes, he complied and once again believes in Santa.   Either that or he is putting on a good show – it’s fine, I will take it!  PS – Mom & Dad, I still believe in Santa, too . . . just in case he wants to leave me something extra under the tree in Connecticut.

Elf on the Shelf (check), Christmas Tree (check), trip to Edaville USA to go to the Festival of Lights, ride the Thomas the Tank Engine train and see Santa (check) . . . next up Lego Advent Calendar, movies & books about the season . . .

I feel this need to make memories – magical happy memories that will help to carry us all through her surgery and recovery.  There is a slight chance, she could be inpatient in December and I even have plans in my head on how to brighten her hospital room and all the antics her Elf on the Shelf, Jingle Belle could get into at Boston Children’s Hospital!

I’ve got this and the “this” that I am referring to is Christmas 2015.

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Blessed

It’s time for a rather traditional Thanksgiving post about all the things that I am thankful for . . .  It has been a difficult month.  From Genevieve’s catherization to finding out that her next open heart surgery is looming, perhaps even before the holidays, is a lot to process.  Truthfully, I am struggling to process it – we will save that for another day.

My favorite “feeling emoticon” on Facebook is blessed.  It just seems to describe many of my posts.  I am blessed.  It goes without saying that my Harry & Genevieve are the greatest blessing and while it is not an easy journey, we strive to make the most of every day.

While it may be what family does – both Al and I are very fortunate to have great families.  Becoming a mother has added a new and amazing dimension to the relationship with my parents.  Sometimes they seem like strangers – these people that are completely incapable of saying “NO” to my children as evidenced by a Swarovski crystal tiara that my daughter came home from Disney World with – one that rivals the crystal headpiece I wore for my wedding.  I know my brother would agree, they had no trouble saying “no” when we were growing up.  Always, they are my safety net.  My promise to my children is that they will never be alone.  My mom sat at my daughter’s bedside at Boston Children’s Hospital nightly in the week after she was born while I was still recovering from my c-section across the way at Brigham & Women’s Hospital.  Both my mom and dad have made sure that Harry is loved, cared for . . . and a little spoiled when we have needed to focus on Genevieve.  They make it possible for me to keep that promise.

I always knew my family would be there – it is my circle of friends that constantly amaze me.  My dear friends from childhood that take time out of their day to check in on me, send care packages to my daughter.  In Harry & Genevieve’s world, you are family.  There are days when I think Genevieve might have a crush on my friend’s son so she feels the need to clarify whether or not they are related!  My friends that will send me a funny or inspirational text or just sit by my side, hold my hand and be quiet with me.  My wonderful neighbor who keeps an eye on the house and leaves treats in the mailbox when out for a walk with her beautiful daughter.

My automotive family at The Herb Chambers Companies – so much more than co-workers, especially with all the hours we spend together both in and outside of the office.  When I can walk into any dealership and before we get down to business, someone will ask “how are YOU?” and mean it sincerely.  14 years and counting and many of you were there from my first day – thank you for the hugs and kind words as well as the endless supply of Dunkin Donuts & Starbucks, the drinks and the company at the tattoo parlor.   No one else has as much fun as we do in and out of work!

My multi-faceted online friends.  Friends from high school and college that I have reconnected with – while I may not see you, I feel like I know you so well as I follow your lives and watch your families grow.  My CHD family, the heart warriors and angels, your advice has been invaluable.  You taught me the terminology, gave me a crash course on the heart and helped me to navigate the medical world that has become such a huge part of our lives.  I know that Genevieve’s next hospital stay will be a little brighter because you have helped me figure out ways to make it easier for an older child.  Believe me, this was very different when she was not yet 2 years old – the conversations are so much harder at 7.  It’s My Heart – New England – the group that has supported my family and helped Genevieve to know that she is not the only one with a special kind of heart.  She does not travel to the hospital without her IMH water bottle.

I cannot forget “the moms”.  There are so many – moms of multiples who helped me figure out how to suddenly be a parent to two children, moms of other children in the same class as Harry & Genevieve and my online community of moms.  Those who I have not met in person, yet still have care packages delivered to my house and send messages throughout the day – sometimes widly inappropriate yet always good for a smile and much needed distraction.  To “that Canadian Chick” – you came into my life when I needed a friend.  Your timing could not have been better – no regrets and live happy!

Teary eyed, sleep deprived, still overwhelmed, still feeling like my world is spinning without any forward movement . . . and blessed.  Always blessed.

So Happy Thanksgiving to you and yours!

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