Tuesday, April 26, 2016

TEN YEARS. This month, we celebrate TEN YEARS with our miracle boy.

It's been ten long years of uncertainty, anxiety, fears, questions, doubts, lack of sleep, isolation and loss for answers. But it's also been ten years of miracles, joy, love, mercy, grace, new friendships of genuine quality, personal growth, humility, dependence on God and surrender to His will.

I know that people don't understand how big of a deal this is for us, when our miracle boy continues to survive. It seems to lose it's "wow" factor when year after year our boy defeats the odds. But the odds are there people, trust us. When the doctors continue to grow more baffled by his continued existence and claim him miraculous, please know, there is still much to be in awe of. Consider that when we were originally diagnosed with our death sentence of Leigh's Disease at age 2 1/2, we were told he was already on borrowed time, and most children diagnosed don't live past the age of two. Please remember that when a medical mistake and a new ventilator nearly took his life, we demanded an MRI to compare to the one he had just 2 weeks prior. What it showed, was that in just 2 short weeks, Braden's brain lesions had grown larger. That was 8 years ago. Can you imagine what those brain lesions look like today? We don't need another MRI to tell us our miracle boy is still beating the odds. His specialty doctors continue to marvel at his existence, and they credit his care.

This is what love looks like. Society says we are loving the unlovely, the "lesser than", the "least of these". Loving a human who cannot walk or talk or say "I love you" or say "thank you". This is unconditional love. Even through the sleepless nights because he needs to be suctioned for the eighth time. Even when we have to miss important functions because it's too dangerous for him to go, and we don't have help that day. Even when we only get to vacation about once every 7 or 8 years because it takes a year or two to line up proper care for him in our absence.

We celebrate all of it, because it's a package deal. We celebrate BIG because that's how much we want to say THANK YOU to our village. The party isn't really something for Braden to enjoy, it's a way for us to celebrate those who have supported us physically, financially and spiritually. We love our village. We need our village. We thank you for your continued love and support.

We hope you enjoy some pictures of Braden's 10th Birthday Star Wars Glow Party.

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