Please welcome my good friend Lara to Tales of Mommyhood again! She wrote a guest post for me back in November, and is here now to offer us a glimpse into her life as a Heart Mom. To learn more about her journey through motherhood, you can find her blogging over at Parenting With Heart.
Heart issues are close to my family, with my father having a fatal heart attack when I was a teenager, and my mother having a congenital heart defect. I am happy to help Heart Mom spread the word about CHD's during Heart Awareness Month.
Tales of Mommyhood is supporting me on my own tales of mommyhood, supporting me to educate people on Congenital Heart Defects, to bring a sense of community to the community we are members of. Thank you Tales of Mommyhood for being there on this rollercoaster and for sharing our stories with your readers during Heart Awareness Month.
My reflection 5 years on...
Six years ago I was going to change the world. I have an education, I have drive, ambition and was good at my job. I had been accepted to do some post-graduate summer studies overseas. I was married, we had a beautiful home in the suburbs, two cars and two cats. The world was at my door. Then the most important thing that could ever happen did. I got pregnant!
5 years ago my life changed. We had a baby. "So what?" you may say "sounds like a fairy tale." Let me rephrase that; we had a sick, premature, heart baby. Our world didn't end, it didn't even slow down. In fact that world at my door opened just a little bit further, a little bit differently.
Our son was born at 31weeks very ill. At 32 weeks his heart began to change, he was diagnosed with Hypertrophic Cardiomyopathy (enlarged heart muscle) and Pulmonary Valve Stenosis (narrowing of the pulmonary valve)...the doctors anticipated it but didn't tell us, they were hopeful they would be wrong. His life expectancy was literally minute by minute for the first six and a half weeks of his life. Then it became hour by hour, month by month and finally by year 2.5 we live by year (kind of). We have learned to live very much in the present with this experience, not taking anything for granted.
Our life as a heart family has been inspired by those who have walked the path before us, who have joined us along the way and who will follow us. Their lives touching ours, filling our own hearts and minds with love, gratitude and most of all learning.
We are some of the 'lucky ones', we don't have a ton of medications to give stinky monkey, he has only had one open heart procedure and he is, considering everything he has been through a typical 5 year old boy. Lovely and challenging. All that said we live with the fear of sudden cardiac arrest, of a boy we know we have to limit activity levels at a certain point, of a boy that may not have a heart that beats properly or wears out. We live in fear of our annual echo appointment. We live knowing that there is an unknown that we can't plan for or bear to think about because it hurts every fiber of our being...life without our first born. But this thought is ever present in our lives.
Every year we celebrate his birthday, and this year it dawned on me how thankful I am to have him for five years, not just one. Then the stark reality of -- we are one year closer to another repair seeped into my mind. My birthday wish for him as we blew out his candles; that some researcher somewhere could speed up production on a non-invasive surgical technique to do the repair. OR better yet that stem cells from our other two healthy heart kids can be grafted on to his heart and heal it. But instead of those we will just enjoy Stinky Monkey for what he is; an alive, breathing, lovely cardiac kid. His cheeks are rosy, he runs with his friends, life for him and WITH him is good.
The world changed for me five years ago, the world opened up for me differently than I ever imagined. I have met doctors, nurses, technicians of various kinds. I have met families and children, grandparents and siblings. I have reconnected with old friends in parallel lives and developed friendships across borders with mothers "like" me. The world is open to me, just a different one. Not all experiences have been positive, but all experiences have made me who I am. And I am just beginning to understand who that is 5 years on, just starting to understand my place in the world again 5 years on. I may not change the world as I set out to a decade ago, but I will change it for my little boy. I will bring awareness to heart defects, I will bring something to those lives touched by CHDs in some way shape or form. Stinky Monkey's story is one that makes me proud, so now it's my turn to make him proud, proud to be a cardiac kid.
Full of life, full of love, full of play just with a big heart!