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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Contact lenses, non-waterproof mascara and tears don’t mix

Lessons learned – when you are waiting for a call that you know is bound to make you cry . . . use waterproof mascara and consider leaving the contact lenses at home for glasses.  The lint on the Kleenex gets in your eyes and then it is just downhill from there as you try to wipe away the black streaks of mascara without losing your contacts.  Ultimately, you will look like a pinterest fail for how to make a smoky eye.

13 long days after hearing that Genevieve would require her 2nd open heart surgery, I finally connected with the scheduler at Boston Children’s Hospital.  We will move forward with her pre-op EKG, bloodwork, X-Ray and consultations on January 13 (there is that number again – let’s hope it is a lucky 13) and then her surgery will be on January 14th.  Assuming that she stays healthy, no fever or cold in the week before.  Did I mention it will be in January?

For the past week, I have repeatedly said that all I wanted was a date.  To put a date on the calendar and then we would figure out the details.  That I could not stand the waiting and limbo.  So I should be relieved, right?  I have the date and I put it on my calendar, I reached out to my work, family & friends and everyone is moving together to see that we are all supported.  Except that I am not relieved – it all became too real very fast.

This is my blog and I will cry if I want to!  So, let’s be transparent for a moment.  Right now, I am angry.  It is not fair that she needs to go through this again.  She does not deserve this pain . . . January 14th will not be the last – it is just to hopefully get us to the teen years and then we get to do it again and maybe again as an adult.  She will be a cardiac patient for her entire life.   The ultimate mommy guilt?  What the hell did I do wrong?  I have told numerous parents who have asked this exact question, that it was not their fault, that they did nothing – that sometimes things just happen – 1 in 100 times a child is born with a congenital heart defect.  Yet, I still find myself going through everything that I ate, everything that I touched, everything that was in my environment and I wonder, what I did to cause this to happen . . . I am sorry Genevieve.

Thank you to all my friends and family that have reached out to me today.  Took me aside and just listened to me, gave me a hug, sent me text messages, reminded me to be good to myself, scheduled “Girly Day” out, and left posts filled with love & prayers on Facebook.  Near and far, you all are a major part of what will get us through this.  That being said, tonight I am angry and I am allowed to be pissed at the universe.

Tomorrow, I will be thankful that we will celebrate a Merry Christmas and Happy New Year before we hand her over to her surgeon.  Tonight – I have no Christmas spirit, no peace and no “we’ve got this” strength.  I’ve switched out the work clothes for a comfy hoodie and yoga pants and washed off the mascara so no more will run down my cheeks.  Tonight I am feeling exhausted, ugly, mean and not anything like all the pretty pictures on Facebook.  And I have decided, that it is ok.

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PS – I can’t end this on a complete downer note . . . Genevieve & Harry have the Christmas spirit and I know that she still has got this!

 

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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