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.
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.
When I told people that I was pregnant with twins, so many of them would look at me in horror and tell me that they could never do. That’s a really great way to terrify a first time mom! Fortunately, I met a mother to multiples early on who gave me words of wisdom that I find myself sharing with other first time moms expecting twins – you don’t know how much work one child is . . . you will learn life with two at the same time and you will do great. This was my life as a first time mom and it is all that I know.
As I listened to the stories on the local radio station – Mix 104.1 Cares for Kids radiothon benefiting Boston Children’s Hospital, I thought a lot about Genevieve and these past 8 years. She doesn’t know a different life – this is her reality. She was born with a heart defect, she has had numerous visits to the ER, surgery, EKGs, echo cardiograms, blood pressure checks and more. My daughter has a cardiologist that has followed her progress dating back to my pregnancy. That gets me every time – my daughter has a cardiologist and a cardio-thoracic surgeon.
People frequently use the word “fighter” to describe Genevieve. How strong she is . . . and while she is definitely the strongest person I have ever encountered, sometimes that word doesn’t fit. She is a survivor – here living life, the only one she knows.
As any parent, it hurts me deeply to see her in pain. Asking her to go through open heart surgery was difficult. We did have many conversations of the “why me” variety. While, we would not have offered her the out and allowed her to refuse treatment, she also never considered it. This is her life, this is the heart that she was given and we are going to keep it beating as strongly as we possibly can for as long as we can.
This is life as she knows it and while it is at times hard for me to journey with her through it – she doesn’t know an existence without the Heart Center at Boston Children’s Hospital. She is navigating life with a congenital heart defect . . . and she is doing great.