I don’t know how far I will go with this blog, or how often I will even post them but I wanted to start so that people we don’t know could get to know us a little. As you may have read on our front page, we lost our first born daughter Monti Ellen to a congenital heart defect called Hypoplastic Left Heart Syndrome. Basically she was born where one half of her heart did not form. She had open heart surgery at 3 days old at Boston Children’s Hospital in August of 2013. One month and two days later, we would end up having to make the most difficult decision to take our daughter off of life support. The machine that was saving her life was also taking her from us. Personally, I do not know that I have ever recovered or will recover from that moment. It is definitely something I’ve stopped talking about and avoided. I am just muscling past thinking about those moments because even almost 7 years later it is incredibly painful.
I’ve been putting all of our love for her into this nonprofit and trying to grow it in the most introverted way that I can haha. It’s a strange juxtaposition to be in because I also can’t wait for someone to hand me a microphone so that I can say her name outloud. To let them (and her) know how proud I am of us. So even when I feel this incredible fear at planning another fundraiser and opening myself and my family up to crying or being vulnerable, I hit the send button with no hesitation. It isn’t about our pain anymore and yet it also is. The question I feel I ask myself so often is; how can I turn this pain and fear into something people will actually connect with so that we can save some kids? So that we can pay for a few nights at the hospital and make some parents feel like somebody out there is caring for them when they don’t even know how to care for themselves? I don’t know the answer but I will keep trying.
Not sure if I’ll share this or delete it…but it did feel good to start to write again. I didn’t realize how much I missed it from her caring bridge journal.
Thumbs up and goodnight,