You don’t have to go it alone

Saw one of those motivational quotes that said, “Sometimes asking for help is the bravest move you can make.  You don’t have to go it alone”.

After Genevieve was diagnosed with a congenital heart defect, I did what I do well.  I researched non-stop.  I learned all I could about her particular defect, I studied her doctors, different treatment options . . . and I entered the “heart community”.  Both our local It’s My Heart – New England group and many online communities.  Over time, I became a moderator for an online group and found myself as the “experienced” parent that many new parents turned to for advice on preparing for their child’s first surgery.  Repeatedly, I would say, build your support network.

Overtime, I realized that I was really bad at taking my own advice.  My parents and my husband’s family has been amazing.  Without asking, they have offered their support and have been present whenever we needed them.  My mom probably has a bag packed next to her bed ready to grab along with her keys to make the drive from Newington, CT to Boston, MA at any time.  I have the best parents.

Asking for help beyond that has been a struggle.  I have frequently found myself alone and disconnected.  Not because my friends did not care – it was because I could not find the words to tell them what I needed and instead opted to go it alone.  Over the past few years, I have reconnected with many friends thanks to social media and smart phones.  Friends from high school still in my hometown and others that have also migrated to Boston.  I have made new friends at work – people that I can talk to and actually want to spend time with outside of the work day.  Then there is my online community, it has expanded over the years beyond the heart community to moms of multiples and moms in general.  One of my best friends came into my life when I needed someone.  She didn’t judge me and I could tell her anything.

The outpouring of support as we prepare for Genevieve’s surgery in January is incredible.  My friends have built me playlists so that I can find peace in music, care packages come in the mail, all the people that follow and comment on this blog, regular text messages so that I know someone is thinking of me.  While some messages are completely inappropriate, you know that I am laughing.  There are people praying for my daughter all over the world.

For those that are struggling with anything in life, my advice continues to be to ask for help, tell people what you need, build your support network.   My commitment to myself, my friends and my family is to try to do the same.  This goes both ways, tell me what you need.  I am here.  Just know that I am always a work in progress.  So call me out on it if you see me disconnecting from the world as none of us have to go it alone.

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Why, why, why? (The F Word Part 2)

This fucking sucks – yes – there is that F word again.

Genevieve has overheard bits and pieces of conversations lately – with the school, between Al and I, with my parents, with the dance teacher, with the doctors and nurses in the recovery room post catherization.  While you do your best to protect them and to focus on the holiday season, little eyes are always watching and little ears are always listening.  Tonight, she came to us with her questions.  While I am thankful that she feels comfortable enough to talk to us . . . it still sucks.

Tonight, she came to us with all of the “why” questions and we once again entered into a conversation that we were unprepared for.  While I prefer to be the planner, I think in this situation, we are better being real with her.  Even if I could script out the conversation like one of the Call Guides that I teach at work, she would take me off course into unchartered areas throwing objections that would require me to answer honestly and to think on my feet.  Nothing prepares you for these conversations.

My heart feels as if it is breaking as I do my best to answer my daughter’s questions on her own “broken” heart.  We do this because we want you to be well, to be able to keep playing, dancing, swimming, Little League and whatever else you want to do.  I don’t know why you were born with a heart defect – sometimes things like this just happen.  I do not know why God made you this way, I just know that God put you with parents and family that love you so much and made it possible for you to be treated by the best doctors in the world at Boston Children’s Hospital.  You will never be alone for you are surrounded by people that love you.

Why does it have to be so soon?  Why January?  Why not April or May?   Because January is a good month, it is after the holidays and you will be recovered in plenty of time to get back to your dance recital and First Communion.  It is a good time to snuggle up in a warm house and rest.

What if they make a mistake?  They won’t.  Your doctors are the best in the world.  People come from all over to be treated here.

I am scared, I am worried.  To this I have no answers – truthfully, she is making a statement so perhaps it doesn’t require an answer.  I am scared and worried, too.  So my baby G, you are not alone.  I am here when you need to talk.  I will do my best to answer your questions and to find you the help and support you need as we go through this.

And then there is my son, he thinks before he speaks and his questions tend to be very direct.  He turns to his twin sister, “I don’t want to scare you more but . . . ” and then mother’s intuition kicks in as I know what he is going to say.  Harry, you talk to me.  I pull him close so that he can whisper his question to me, to just me.  Can you die in open heart surgery?  There is only one answer to that question – right or wrong – they are 7 years old.  NO!  No no no, Genevieve is going to be fine.  We’ve got this.

After an hour of talking, watching YouTube videos of her surgeon, some extra TV time to try to distract her from her fear and worries, we finally get them tucked back into bed.  Pray for a good night’s sleep and peaceful dreams – she needs it.

And now that they are back in bed, I am wrecked.  I am crying as I type this out – it is not fair, nothing about this is fair.  I am physically, emotionally, mentally and spiritually drained from the conversation.  I am worried, I am scared and I am struggling.  I am angry at the universe and I am hoping that in writing, I will find a moment of peace as I, too, need to sleep.  My children need me and I need rest to find the strength to be present.

We’ve got this – there are no other options.  We will because we must.

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Here is my Harry & Genevieve, we knew this day would come.  Years ago, I ordered Healing Helpers.  These teddy bears have been modified to include a zipper pouch in it’s chest and a heart.  Gen’s has her initials and stitches to represent heart surgery. Harry’s has his initials.  My hope is that this will help them to feel connected when they are apart.  Twin bears for my twin babies.

 

Writer’s block

Dear Blessed Heart Blog – I love you and could write for hours.  So many thoughts swirling around my head that need to fly out across the keyboard and onto the screen.   My journal made public.  Thank you to all that come to view my posts, share them with others and just support me in this endeavor.   This is my outlet, my therapy as I process the next steps in Genevieve’s heart journey and my life in general.

I mean it -I could write here for hours – the thoughts in my head seem endless.   Unfortunately, tonight there is another assignment calling out to me.  I volunteered to write an article for our company newsletter.   It is a follow up piece to one that I did 5 years ago.   Yes, I know – there is more than enough on my plate without volunteering for more.  I just can’t resist a challenge and I really do love what I do.

Let’s go back – 5 years ago at this time, Genevieve was fully recovered from open heart surgery.   She was off all medications and had no restrictions.   We were ready to celebrate Christmas and looking forward to the new year with our 2 year old twins.   My company had made the list of the Boston Globe’s Top Places to Work for the second year in a row.  As they say, life was good.

Present day, we made the list for the 7th year in a row.   My company is still a great place to work with amazing benefits that completely take away the worry as to how we will pay for Genevieve to receive the best care from some of the best doctors in the world.  Yet, I am struggling to find the words to put on that paper to share with our clients.  There is a big difference between the euphoria of recovery versus the anxiety of preparing for surgery.  So if you have the cure for writer’s block, please share in the comment section.  I could use it right about now.

I know it will come to me – I am good under pressure and I love a deadline.   Monday morning – still plenty of time.

 

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!

 

And the Bad Mommy Award goes to . . .

I love my job (most days) – I work for an amazing company filled with fantastic people that truly care about both my personal and professional success.  Competitive compensation, room to grow and great benefits that alleviate the worry of how we will pay to have Genevieve treated and seen by the best doctors in the world.

Sounds pretty good, right?  Except that I work – and I work a lot. Hours in traffic getting to where I need to be, hours in the dealerships going from place to place and frequently more hours at home catching up on E-Mails and working on reports and projects after H&G go to bed.  This is what I do – some of it self-imposed as I am a perfectionist when it comes to meeting presentations and designing training classes.

All of this leads to the fear of being the bad mommy.  Missing Harry receiving the “Kindness” award at school because there is a work event that I cannot skip – thank goodness for smartphones so that I could catch the replay at night.  He is feeling a little lost with all the attention being given to Genevieve and I am not sure that I am doing enough to see that he also knows that he is loved and special.

Fear of being the bad mommy because when the school nurse calls to say Genevieve is in her office complaining about leg pain in the area of her catherization, I talk my daughter into staying in class for the rest of the day.  She has missed 3 days and will miss many more when she has her surgery.  I need her to be in school now if she can.  Thankfully, I guessed right – she was calm on the phone, exuded a bit of the sass and attitude that I have come to know when she just doesn’t want to do something.  She was fine to go back to class and stayed the entire day and for the afterschool program.  I did give her the “out” – if you can’t, then go back to the nurse and she will call me and I will immediately come and get you.  Oh, and if you are in too much pain to stay in school then we will be off to the doctors to be checked out – she was not too crazy about that idea but did throw out a defiant, “FINE – let’s go to the doctor!”  It was the mother daughter battle of wills – I won this time.   My Genevieve is tough, was able to go back to her 2nd grade classroom and ultimately had a fun afternoon of learning with her friends.

I am fortunate that my friends and family frequently remind me that I am a good mom.  These feelings of doubt do not come from the outside but from deep within myself.  The constant juggling act – my life is a Lexus slogan – “the relentless pursuit of perfection” in everything that I do.

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Rachel Platten made me cry!

On Thanksgiving day, Genevieve sang Fight Song to me – a little shy, slightly congested, swaying back and forth.  She is 7 years old – probably just her favorite song in that moment, if I asked her tonight, she might name a different one.

G’s Fight Song

She doesn’t know her power.  This is her song, I need her to fight, to take back her life and not let Aortic Stenosis and Regurgitation prevent her from living happy.

On my commute home, another Rachel Platten song came on the radio as I was flipping through the stations – Stand By You.  Just as Fight Song is Genevieve’s tune, Stand By You might be mine.  It is a definite departure from the music that I usually listen to.

“And love, if your wings are broken
Borrow mine ’til yours can open too
Cause I’m gonna stand by you

Even if we’re breaking down, we can find a way to break through
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, cause I’m gonna stand by you”

I know there will be pain, I know that the first few days or so recovering from surgery will be walking through Hell – breathing tube, chest tubes, IVs – getting back up on your feet and taking those first steps again.  So, Genevieve, my love, you are not alone.  You have the most incredible team standing beside you – your brother, your parents, your grandparents, uncles & aunts, cousins, the Cardiac doctors & nurses, all of our friends, all of your friends & classmates and the CHD community.

The outpouring of love and support for you is amazing.   You are not alone and so many more people than your immediate family are standing by you.  They make it possible for me to be there for you.  Neither of us are alone and for that I am thankful and blessed.

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PS – Still no call from the team at Boston Children’s Hospital.  The endless waiting may be driving me batty.  If no call tomorrow, I will call them on Wednesday . . . or maybe tomorrow afternoon because I suck at waiting patiently!