Alphabet Soup

IMG_8017 Wow – it has been a while – over 2 years.  As always, I write for me and sometimes it is not pretty (you have been warned).

As we celebrate Genevieve’s 8 year anniversary of her first open heart surgery, we are adding another diagnosis to the laundry list of labels placed on an almost 10 year old girl.  AS – aortic stenosis, AR – aortic regurgitation and now CRPS – complex regional pain syndrome to go along with anxiety, sleep issues and so many other invisible battles.

At the moment, I am finding CRPS to be the most difficult – and this comes from a mother that has placed her daughter in the arms of a surgeon and allowed him to stop her heart not once, not twice but three times.  This is the one that I have not yet wrapped my own head around.

According to the Mayo clinic: “Complex regional pain syndrome (CRPS) is a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury.”

For Genevieve, it has meant a full arm cast followed by a hinge brace for an arm that was hurt in a fall but not fractured, an air cast and crutches for a turned ankle. . . repeated x-rays of a wrist that has been painful for over 8 weeks, temperature differences from one hand to the other and most recently pain between her thumb and palm that make it unbearable for her to hold a pencil.  When Genevieve is feeling good, she is unstoppable as one of the fastest swimmers at camp, climbing walls and tackling ropes courses.  Unfortunately, when the pain is present, she is in tears begging us to make it stop, screaming that it is getting worse and not understanding how neither the doctors at Boston Children’s Hospital nor her parents can seem to help.

To know me, is to know that I am a researcher – all those years of working at Lucy Robbins Welles Library trained me well.  Unfortunately, what I am learning is terrifying.  Perhaps more so than her congenital heart defect.  The pain can be so extreme, so out of proportion with the injury,  that it is comparable to child birth or the amputation of a finger.  I am still letting that sink in.

There are other fun facts such as “no cure” – the best we can hope for is remission with the knowledge that any injury (or surgery) could trigger it again.  Some children struggle with depression, atrophy, bullying, self injury and suicide.  Terrifying.  I am trying to focus on the positives, given that her symptoms started in March / April, we discovered it early (never doubt a mother’s intuition) and we are working with the Pain Clinic at Boston Children’s Hospital – one of the only places in Massachusetts that treats children with this condition.

I feel like I am on a tightrope – trying not to “medicalize” an injury that I know is not a fracture, not something that can be treated with a cast or immobilization while not dismissing the fact that her pain is real.  My focus is on helping her build a strong mind and techniques to find peace as she works through it.   I have gotten sucked into the “In Search Of” reboot on the History Channel with Zachary Quino.  The episode on superhumans and the ability of Shaolin Warrior Monks to control their pain through meditation is fascinating.  I am not sure Genevieve found it as interesting when I confiscated her iPad and made her sit on the couch watching it.  Wonder how she will react when I enroll her in training at a Buddhist temple?

I have experienced the judgement – I know she looks great in photos, I know that she is bearing the weight of her body on her wrist, throwing a ball, riding a bike . . .she has some pretty good days.  Perhaps that is what they mean by complex, it is definitely complicated.  When it is bad, it is very bad to the point that I almost do not recognize her but when she can handle it, Genevieve is powerful.  If I feel this from my own friends, what will she encounter from her peers?  If I struggle to find the balance of supporting her yet not calling 911 every time she trips over her own feet, how can I expect her teachers to understand?

There are more questions than answers and lots of trial with hopefully not too much error as we figure out what will help Genevieve to live happy.  For tonight, I am thankful she is here and celebrating all that she has already conquered.  Nothing has changed – she is meant to be and we do not journey alone.  With the love of our family and friends, we will push on – survive and thrive.

 

 

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A Picture is Worth a 1000 Words

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Happy 2 Year Ozaki Procedure, Genevieve!

While Genevieve hates this picture, it is the image forever locked in my mind when I think back to Genevieve’s 2nd open heart surgery . . . and I wasn’t even there to witness or snap it!

This was about 30 hours post surgery.  With a lot of coaxing and some bribery, Al and the nurses got an angry 7 year old out of bed and onto her feet.

“Genevieve, do you want your underwear?”, Al asked.

“NO!  I DON’T CARE!  Let’s go!”, she growled at him.

So off they went to walk the halls of the Cardiac ICU with a nurse trailing behind carrying her chest tubes.  The first of many strolls she would take over the next 4 days.

Why do I love this picture?  Because this IS Genevieve.  It is in the eyes – anger, fire and determination to get this hellish task over with so she can return to the comfort of her bed.  Gritted teeth not yet ready to smile at us. Asking Genevieve to go through open heart surgery was one of the hardest things that I have ever done.  She questioned why she had to, she told me she didn’t want to but she never said no.

When I think of my daughter, this is one of the images that comes to mind.  She is sassy, demanding and truthfully, she is quite spoiled.  She is determined and frequently will fight for what she wants no matter how trivial.  When I reflect on the past 9+ years, I know that some of this is our doing.  Before she took her first breath, we knew that she would have to be strong to endure all that would be thrown at her . . .to live.  Don’t underestimate the impact of nurture, we did what we could to design her this way.  Thankfully, she is also inquisitive, kind and loves her family and friends deeply.

Genevieve has read most of this over my shoulder and asked that I click “publish” so I am going to finish up this entry with just a few more words for today.

Healing is not linear and as a family, we continue to work through the emotional toll that a congenital heart defect has inflicted upon us.   To my Genevieve, the now 9 year old that sleep walks with tears streaming down her cheeks, you are stronger than you know.

 

 

Post Script – it has been more than a year since I have written here.  It hasn’t been easy as I have faced my own health struggles that I still do not have the words for – a story for another day.   Thankfully, Genevieve has had a very healthy 2 years and counting with her bovine tissue supplemented aortic valve.  Science!  So amazing and our team at Boston Children’s Hospital . . . among the best in the world.  

 

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.