Unless we encounter another delay, Genevieve’s surgery is just days away at this point. I am not sure how I am feeling . . . numb? Is that better than wrecked? There are moments where I feel as if I am watching myself go through the motions of life from outside of my body.
It all feels just beyond my control. Those who know me well can attest to the fact that I may be a bit of a control freak. In my head, I know how things should be done and my world would be so much better if everyone just listened and followed my plan. I can hear my friends laughing as they read this. So, I may be more than a “bit of a control freak”.
With Genevieve’s surgery, I have reached that point where I have handled most of what I could control – arranged things with the school, referrals and approvals with the insurance company, FMLA for work, built my support network . . . All that seems to be left is to get her through pre-op, sign the consent forms and bring her to Boston Children’s Hospital instead of jumping on a plane and running far far away.
Now, I feel like I am left with luck and faith – a difficult place for me to be. From her diagnosis at 26 weeks in-utero, we have been lucky. She tolerated the Aortic Stenosis and did not require fetal intervention, at just 5 lbs, she breezed through her first catherization and was home off the feeding tube in 10 days and she was in and out for open heart surgery in just 5 days at nearly two years old.
Over the past year, it has felt like her luck has turned. From swallowing a plastic quarter leading to a two night hospital stay and worried looks from the Cardiac team as they focused on the size of her heart leaving the quarter in the hands of GI to her cardiologist saying see you in 6 months only to call back a few weeks later to say that the surgeon wanted her to do a catherization to measure more than what was visible on her echocardiogram. For hours after the procedure, Genevieve had to lay still so that the incision site would clot and we waited and waited for someone to come talk to us about the results. The nurse was surprised that no one had been in to see us yet. The moment that Dr. Lacro, her cardiologist, entered the room . . . I knew. He has a knack for delivering the hard news – from the diagnosis to worried soon-to-be first time parents to the need for open heart surgery. It was worse than they had predicted based on her echocardiogram. Her luck had run out – it was a good 5 year span – now it was time to schedule her next aortic valve repair. I fear we are in a tailspin – I need her luck to turn back around – I need the surgery to go well.
Then there is faith. Trust or confidence in something or someone . . . all beyond that which I can control. I want to believe that she can do it again – that she has the strength to bounce back from this and quickly return to life as a 7 year old. I just feel powerless – I can’t personally take it away and make it better – I must put my faith into God and her amazing team of doctors and nurses. Despite having the symbols for faith, hope and love permanently marked on the back of my neck, I am still having trouble believing. I have grieved with too many other parents to feel comfort here.
I don’t like having so much beyond my control.