Here is the Facebook post that inspired the need to write – to vent, to pour my thoughts out before they consumed me alive: “Please excuse the language – this fucking sucks (and no auto correct – I do not mean ducking). When your child asks why she has to do this ….”
It was in the minutes before they would take Genevieve away for her catherization. We were in what would be our recovery room for the day, she had her hospital gown – even Gabrielle, her American Girl doll was dressed in a gown complete with a hospital bracelet ready to follow her into the OR. It was then that my little girl looked at me and her father and asked the question that I have been dreading . . .”why do I have to do this?”.
Time was not on our side to have a long conversation – that might have been a blessing as neither of us had a good answer. We stumbled through it, because we love you, because they need to check your heart, because we want you to be well. She looked at us and replied, “but this is big.” Once again, we could not seem to find the words – yes, this is big. We love you Genevieve, you will do great.
Then it was time for a kiss on the forehead as they rolled her away. Like a similar day, just over 5 years ago, I walked the hallway in tears towards the waiting area, towards the cafeteria, towards anywhere that I could get lost in the chaos of people.
A cardiac catherization is big – they put you under anesthesia and send a tube up your leg and into your heart to check the pressures. We completed the consent forms and listened to all the risks from stroke to more serious and rare complications that could result in needing to be immediately put on heart lung bypass. Genevieve was spared the details with her headphones and iPad while we spoke to the cardiac fellow the day before.
Sitting in the cafeteria, one thought kept running through my mind – yes, this is big . . . and what I may ask of you next will be bigger. Open heart surgery, placing her in the hands of Dr. Baird and his team at Boston Children’s Hospital to stop her heart for a third time and to rebuild or replace her aortic valve.
As the day went on and Genevieve bounced back from the catherization in typical fashion – all sass and annoyance that they really did expect her to lay still for 6 hours so that the incision area could clot after the blood thinners, my fear became a reality. Dr. Lacro, our cardiologist, the man that has been on this journey with us since her heart defect was discovered during pregnancy delivered the news. It is time, the catherization results were even worse than they had predicted based on recent echocardiograms.
So to my baby girl, what I am going to ask you to do next is even bigger and it still fucking sucks. It is not fair and I am sorry. All I can promise is that you will not be alone. You will never be alone – you will always be surrounded by those that love you.