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.