Right now, my world is just spinning round and round on its axis. I do not move forward and I cannot move back. Those that know me, know that I am a planner. I love to-do lists and the satisfaction of crossing things off and moving on to the next, calendar and E-Mail perfectly synced from my iPhone to my iPad and laptop. We have plans for next week? Send me a calendar reminder, I will be there and I won’t be late because my phone will let me know when I need to depart taking into account current traffic patterns.
Except now – now I am unable to plan. Waiting for someone to call me from Boston Children’s Hospital to schedule Genevieve’s surgery. Work summit for January, okay – let’s schedule it, I hope that I will be there, dinner & drinks in December, okay – let’s do it – just make sure you write in pencil or we can meet in the lobby of the hospital and have Au Bon Pain . . .
Just spinning, each day spinning a little bit faster – as my life seems to spin further out of control. While I am not ready to place Genevieve’s heart in the hands of her surgeon – I know it is coming and no amount of wishing and praying will change that. I believe and pray that God will guide his hands and that my baby girl will have a successful surgery and recovery but I don’t believe that there will be a miracle making this next step unnecessary.
I need a date – I need to put it on the calendar. Then I can throw myself into the details that I can control – call the pediatrician to check referrals, call the insurance company to check approvals, contact Child Life to help us have these conversations, FMLA paperwork, notify work, contact the school to go over tutoring options for her recovery and most of all set up our support network to make sure that both Genevieve and Harry are loved and cared for. This is the start of my to-do list and while I can write it down, I cannot check off anything without a date.
While working on this post, I just got “a call” – not “the call”. Caller ID – 617-355 – some extension at the hospital. A number that has become too familiar. The details have been confirmed as our surgeon and cardiologist have had a chance to review her case. She will have surgery and they are hoping to be able to use a newer technique from Japan to repair her aortic valve using her own heart tissue and possibly bovine tissue to rebuild. Delaying a Ross Procedure to replace the valve until she is older and bigger. Paperwork is being submitted and someone from Dr. Baird’s office will contact me to schedule. It could be between Thanksgiving and Christmas, it could be after the holidays.
More waiting, still no date on the calendar. Spinning, spinning, spinning – hopefully not for too much longer. I can’t wait for much longer.