The Power of Prayer

On October 16, I was invited to celebrate the wedding of my dear friend Josh to the love of his life Ray . . . and while there is magic when two people commit to spend their lives together; there was a little something extra that day – 3 moments that were personal to me and my family.

Josh is one of those people that you just connect with – his kindness, strength and care for others is genuine.  He is a part of the force that I call “Team Genevieve”.  When he would tell me that he was thinking of me, that he was praying for Genevieve . . . I could physically feel it in a way that words cannot explain.  In one of those small world moments, Josh texted me one day to say that his friend Diana (turns out that she is cousin’s with my childhood friend Beth) brought him Genevieve’s story and asked him to pray for her.  His response was, “that’s MY Genevieve!”.

While G prepared for her open heart surgery, Josh’s amazing mother continued her battle with cancer.  We were all in a vulnerable spot and I found comfort in his strength and that of his family.  Through Facebook, I helped him create a group page for “Team Jana” to support his mom.  Over time, I became “friends” with his mom and aunt Vickie.  It is clear where Josh’s power comes from.

At the reception, we were seated with his Pastor.  She performed a beautiful service that could only have come from someone that truly knew the couple.  While we made conversation at the table, her eyes lit up when she heard Genevieve’s name and she told me that Josh had brought her story to their congregation and that they were all praying for her.  She was so happy to hear that my girl was doing well.  That was the first of three moments in which Team Genevieve was present in the room.

The second and third involved the matriarchs of his family.  Months before the wedding, I had told Josh that his mom was going to think that I was a crazy because I felt like I knew her in real life and that I would need to give her a hug.  So I did – I leaned down by her wheelchair and took a moment to tell her just how inspired I was by her strength and how thankful I was for all her support of Genevieve.  Her determination to be by her son’s side at his wedding still moves me to tears.  Jana makes me want to be a better mother.

Then there is Vickie – surrounded by her beautiful daughters and keeping a watchful eye on her sister during the festivities.   We had some time to talk between courses at the reception and at one point, she put her hand on my arm and said, “Genevieve is meant to do great things”.

Tonight, I am thankful to Josh and Ray for including me in their day and reminding me just how powerful prayer can be.  Team Genevieve & Team Jana – proving that we do not journey alone.

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Say a Prayer

I sit writing this in the Blue House, haunted by darkness, my marriage falling apart and gearing up for Genevieve’s next round of cardiology appointments at Boston Children’s Hospital on Friday – I feel like I am failing.

Those who know us on Facebook may have seen Al’s recent post on “bad decisions” and “irreversible damage”.  Many of you have checked in on me and to those that have experienced my inner bitch pushing them away . . . I am sorry.  Please don’t give up on me – your text messages, hugs and phone calls brighten my day. Be patient with me, as I just don’t have words and I don’t know how to answer the question of whether or not I am okay or what is going to happen next. It would be easy to say that being parents to a medically complex child has taken a toll on our marriage but truthfully, our relationship had many cracks long before H&G came into the world.  For the moment, let’s just say that I could not have picked a better father for Harry & Genevieve.

My response to his post was to say a prayer – not for me, for my Harry and Genevieve and an extra one for my G.  This has been difficult for all of us and life doesn’t stop to give us a chance to catch our breath.  So we move on to her first significant post surgery follow up.  To look at Genevieve, you would think she was doing great.  Back to school with few restrictions after an active summer at the YMCA Camp Ponkapoag.  While I want to believe this appointment will go well, I am struggling.

In addition to all the other stress, memories of her first post surgery visit keep me awake at night – she was 2 1/2 years old and had more energy than her”perfectly healthy” twin.  I was sure we would breeze through her appointment and the doctors would give us the all clear with a cheerful, “see you next year”.  It was the first time that I had walked confidently Boston Children’s Hospital only to leave feeling as if I had been punched in the gut.  After 6 plus hours on the operating table and having her heart stopped twice, the repair that looked so perfect in the days immediately after had failed.  Her aortic valve would need a second repair or replacement sooner than originally anticipated.  She made it an amazing 5 healthy years to age 7 before her next date with the surgeon.  My girl – she is powerful.

So, with all of the darkness that surrounds me, I have a great deal of anxiety going into Friday morning at the BCH Heart Center.  A prayer for Genevieve would be appreciated.  I would say that if this goes poorly, someone is going to have to come and pick me up off the floor as I don’t know how much more I can take . . . but truthfully, no matter what they say . . . we will continue to move forward.  That’s what we do – Team Genevieve.

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Blue skies and a faint rainbow – let’s hope this is a good sign for Team Genevieve.

Tap tap tap

When the twins were newborns, I would walk around patting them on the back and shushing them to be quiet.  Frequently, it was to prevent the one in my arms from waking the one that was sleeping somewhere nearby.  Before she could talk, Genevieve would wrap her arms around me while I carried her and her little hand would tap tap tap my back.

Even now, whenever she gives me a hug or when I manage to still pick her up despite her determination to outgrow my ability to carry her; there is that tap on my back.

So today was challenging, the weekend has been tough and I am exhausted from too many nights of interrupted sleep, just completely drained by life.  When I feel that I can do no more, there is that tap tap tap on my back as we watch the women’s gymnastics on the Olympics and for now I am okay.

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6 Years Later – we had no idea…

Tomorrow is the 6 year anniversary of Genevieve’s first open heart surgery just a few weeks shy of her 2nd birthday.

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This girl – so little.  She had no idea what was about to happen.  At this point, she was only communicating the basic needs – hunger, happiness and pain.  We read her stories about Curious George being in the hospital and tried to find the words.  There were none.

She wasn’t the only one – we had no idea what was about to happen.  Consent and paperwork was a blur – when I think back to August 5, 2010; I have three very clear memories of that day.  Carrying her into the operating room with the Cardiac surgical team around me while Al was left in the waiting room as they only allowed one parent to walk that hallway. He knew . . . there was no way I was going to let her go a minute before I absolutely had to – I stood by the table, I held her as they put her under anesthesia and I kissed her on the forehead before forcing myself to walk out of the OR leaving her in the hands of Dr. Baird.  I couldn’t say goodbye, I told her that we loved her as the tears came.

My second memory was at about 6:15 PM – we received the update that she was on bypass and doing well.  The first of 3 times (and counting) that her heart was stopped.

The third was about 7:30 PM that night.  After grabbing a quick bite to eat at Bertucci’s across the street, we bumped into Dr. Lacro, her cardiologist, at the elevators as we were returning to the waiting area.  In his Hawaiian shirt, he told us that he was on his way to the OR to do the echo cardiogram.  The man who studied her heart from before she was born was on his way to her side.  I think that was the first moment that I truly believed that everything would be fine.

Over the past 6 years, we have celebrated this anniversary – her first heart-a-versary. Now that we are 6 months past her 2nd surgery, it feels different.  She now has 2 of these “milestones” and the reality is that she will have more.  Knowledge that we live with – there is no cure and repairs are temporary.

As I reflect back on both of her surgeries, I am reminded just how blessed we are – how blessed Genevieve is.  We went through that first one with our families and a few friends.  We had no idea – thankfully, we got through it.  Going into her second surgery, we had an idea of what to expect . . . and we needed to communicate that to our seven year old twins. It took a team to get us through her second surgery – our own Team Genevieve.  So to all those that carried us through – prayers, text messages, phone calls, play dates, care packages and so much more –  we celebrate with you.  Daily, I see the joy in Genevieve’s eyes and the smile on her face, she is meant to be here and she is doing so well because she is surrounded by love.  So, thank you.

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My Little Man

Friday night, I wrote the previous post “Life as she knows it” about Genevieve.  Harry couldn’t sleep and was snuggled up with me at my parent’s house as Genevieve dreamed and I poured out some of my thoughts.  He rested his head against my arm and read along as I typed.

When I paused, he turned towards me and said, “Mommy, you wrote all of that?”.  It was both an odd and an amazing experience all at the same time.  061216Norton-104

I could hear the pride in his voice.  He seemed impressed with the words on the screen.

Harry is growing up right before my eyes.  He wasn’t jealous that I was writing about Genevieve, he appreciated the journey that she has been on – the journey that we all have been on together.

He has such a caring heart.  Twins – together from the beginning, connected in a way that I cannot explain.  Over the past year, there have been times when Genevieve has struggled with all that we have asked her to face and Harry has waited by her side patiently as we focused our efforts on her.  Last night, when Genevieve was too scared to go to bed, Harry told her not to worry – that he would be on the top bunk if she needed him.  It is going to be a sad day when he moves to his own room.

My children are not perfect – they argue and fight, they become angry when they feel that the other is getting more attention or a special treat.  They also giggle uncontrollable and get the other going as I stand in the middle of the room pulling my hair out knowing that I am no longer in charge – unsure whether to cry or laugh with them.  My little man – we are so blessed.

 

 

 

Life as she knows it . . .

When I told people that I was pregnant with twins, so many of them would look at me in horror and tell me that they could never do.  That’s a really great way to terrify a first time mom!  Fortunately, I met a mother to multiples early on who gave me words of wisdom that I find myself sharing with other first time moms expecting twins – you don’t know how much work one child is . . . you will learn life with two at the same time and you will do great.  This was my life as a first time mom and it is all that I know.

As I listened to the stories on the local radio station – Mix 104.1 Cares for Kids radiothon benefiting Boston Children’s Hospital, I thought a lot about Genevieve and these past 8 years.  She doesn’t know a different life – this is her reality.  She was born with a heart defect, she has had numerous visits to the ER, surgery, EKGs, echo cardiograms, blood pressure checks and more.  My daughter has a cardiologist that has followed her progress dating back to my pregnancy.  That gets me every time – my daughter has a cardiologist and a cardio-thoracic surgeon.

People frequently use the word “fighter” to describe Genevieve.  How strong she is . . . and while she is definitely the strongest person I have ever encountered, sometimes that word doesn’t fit.  She is a survivor – here living life, the only one she knows.

As any parent, it hurts me deeply to see her in pain.  Asking her to go through open heart surgery was difficult.  We did have many conversations of the “why me” variety.  While, we would not have offered her the out and allowed her to refuse treatment, she also never considered it.  This is her life, this is the heart that she was given and we are going to keep it beating as strongly as we possibly can for as long as we can.

This is life as she knows it and while it is at times hard for me to journey with her through it – she doesn’t know an existence without the Heart Center at Boston Children’s Hospital.  She is navigating life with a congenital heart defect . . . and she is doing great.

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A New Year

So, June 26th really isn’t New Years . . . except in my head it is.  This is the start of a new year for our family.  Genevieve is 5 months post open heart surgery and is not scheduled back for a check up with her cardiologist until September.  School is out and summer camp starts.

We celebrated our “New Year” surrounded by friends and family at Endicott Park in Danvers for the It’s My Heart Keep the Beat walk.  While this is our 3rd year participating, it is the first year that Genevieve understood what it meant to battle a congenital heart defect.  She has a complete awareness of how she got her zipper down her chest and she learned about pain, survival and recovery.  It wasn’t pictures in a photo album or stories that her parents told . . . it was real.  She also looked at the faces of the angels lost too soon with an understanding of death after losing her beloved cat and formulating questions about her own mortality as she prepared for surgery.

Over the past five months, we have struggled with recovery especially the emotional processing of it all leading to everything from sleep walking to insomnia for our little girl. While she returned to school about a month after surgery, she returned to a classroom that had cheered on Team Genevieve and that had supported us during her transition in and out of school.  A classroom that received regular updates from her brother Harry and their teachers.  She returned to school as the girl that had heart surgery.  Genevieve has always owned and told her story freely but instead of a chapter, one part of her being, it became her everything.

The end of the school marks the end of a challenging year that included a heart catherization in November leading to surgery in January and a long recovery at home.  While I am so thankful for all the support, we are ready to put it behind us.  So it’s New Years for The Norton Family – we said good bye to 2nd grade and we celebrated today with our heart community.

Tomorrow, Genevieve will go to summer camp where she will have no restrictions outside of no contact sports and be able to return to “Genevieve being Genevieve”.  I know that she will talk about her heart and that the counselors are aware of her condition . . .  I also know that it will go back to being one part of my amazing multi-faceted daughter.  She will swim, play on the ropes course and try archery.  She will be a child enjoying long days outside.  It’s our New Year, a new start.

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