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.

Wednesday, April 13, 2016


Our miracle boy will be TEN this month. TEN YEARS OLD. When I reminisce about the day we got the diagnosis that was practically a death sentence, I am reminded about how big my God is!! This child who has never spoken a word has had profound impact on those he has met and many he hasn't. The teacher that cries after every session with him, the therapist who is inspired by his blossoming relationship with his little sister, the family who reads this blog knowing they are not alone in their journey, our friends who take a step back when they are reminded not to take the daily issues that come with raising children for granted... his impact is probably bigger than we even now.

Raising a "pillow angel" like Braden means that while he isn't meeting certain development milestones, it also means that as parents we are also left out of experiencing certain parenting milestones. What might those be, you ask? Here is the list of parenting milestones so many may take for granted, that Braden will never be able to give us:
* Smiling at us
* Giving us a hug
* Saying "Dadda" or "Momma"
* Saying "I love you"

Now, enter our adopted daughter, Laila. She is a smiling champion and a social star. Even in her early days she knew how to engage with people and make them feel important with her infectious smile. Laila is hitting all her developmental milestones, and many of them at light speed! She started officially walking in her 9th month. She just turned 10 months old, and now is walking/toddeling more than she is crawling to get around.

This week we experienced a "normal" surgery of getting tubes put in Laila's ears. When we had her first tested for Early Steps back in November, the mandatory hearing test showed she had clear fluid on her inner ears. We battled constant sinus issues and when antibiotics failed to clear it, the ENT did another hearing test, again showing the hidden clear fluid that the physicians could not see. When the doc put in her tubes, he said the fluid was turning cloudy and thick. If this had gone on too long, she could have experienced hearing loss. It was a good reminder that sometimes we should give thanks amidst our struggles, because sometimes the struggle can keep us from something catastrophic.

At EIGHT months old, she hit a developmental milestone and we hit a parental milestone... our first HUG. I probably cried about it off and on for almost 3 days before I could even try to talk about it. As parents, we have never been hugged before by one of our children. THIS WAS MAJOR. It was like we were getting a hug from her, her brother, and God all at the same time.

And at least for now, she hugs with fervor I hope never fades. She is exuberant in her expression of hugging. What's more adorable is that she often "pats" at the same time too... that was her first sign of affection at about 5 months old. She squeals for joy when one of us comes home or picks her up. And she loves on her big brother.

These days, as soon as she hears a beeping sound from his room, she is off down the hallway crawling as fast as she can to see what's going on. She loves to pull off his blankets, but she also likes to "pat" his arm and babble the words "bubba". BE STILL MY HEART. She will often lay her head down on him and hug him too. And Braden, who usually will sleep for anyone coming in the room, will consistently wake up and engage with her. I love that they are forming a sibling bond, what a gift!

So this month, we gear up for the big birthday... STAR WARS theme this year! Brad's folks will be joining us too as we celebrate with our very own "Luke and Laila" (LOL)... I can't wait to share the pictures with you all. Thanks for checking in on us. Keep praying for Braden to stay healthy and pain free, we seem to be dealing with a lot more pain management issues these days. We appreciate your prayers so much!

Much Love,
Kodi, Brad, Braden and Laila