YOU GUYS. Miller made his TV debut (well, technically his second appearance as he was in a Taylor Electric commercial as a teeny babe) and had a nose-pickin’ time! Literally. Proud mom moment (face palm). I shared in the last post we were asked to share Miller’s story to help the West Texas Rehabilitation Center raise funds during their 50th Annual Telethon and Auction held January 18, 2020.
with Mickey Mouse Clubhouse on Disney Plus.
I’m thrilled to report WTRC raised the highest amount in their history – $1.5 million dollars!!! The West Texas Rehabilitation Center is a private, non-profit, outpatient medical facility, and their mission is to improve the quality of life of patients regardless of financial circumstances – more than 650 patients per DAY, y’all. The Rehab functions as an independent, gift-supported organization, relying on donations for a significant portion of its operating budget. So we owe you a huge THANK YOU to each and every one of you that made a donation towards their mission. Please know you are directly impacting the lives of children (like Miller!) and adults across Texas on a daily basis.
If you missed his broadcast, you’re welcome to see it via YouTube here.
OK remember how I said we had FOUR giant things happening in 2020 for our boy? Well, I’m here to announce #2 – or should I say “shout” about it!? Starting today and running through the month of February, our son’s story is being shared by Go Shout Love. Their goal is to shout love for kiddos on rare medical journeys as they feature T-shirt designs based on each kid’s story sold throughout the month. Our family will receive a portion of the proceeds to help accommodate Miller’s needs, specifically his mobility around our home.
This organization is made up of a small team of do-gooders from across the U.S. When they feature a family, they plan a visit. Our visit happened in December. The lovely souls responsible for GSL asked us if we had any ideas for the design. We had two! The first: that it reflect his connection to the story to David and Goliath. And second: that it have some green to promote mitochondrial awareness. I mean – could they have done any better!? And they’re so SOFT. You’re gonna want one. I can feel it.
Back in February 2019, a special little boy was featured by this organization. Our friends, Katie, Tyler and Beckett Spencer were highlighted last February for their rare medical journey. Beckett was diagnosed with a different form than Miller, but all the same, the boys were diagnosed with Leigh’s – a rare mitochondrial disease. We had the opportunity to love on them throughout the month. We got to see behind-the-scenes views of his life – his medications, his routine, his joys, his family, and the love that enveloped him. Our family ordered T-shirts designed with Beckett in mind and we wear them proudly. I wore it on that day of our visit in December to represent our boy Beckett. When they lost Beckett in April, our hearts broke. We’ve had the opportunity to meet the Spencers. We’ve laughed together, cried together, loved on Miller together, and then they went and did a thing – they nominated Miller to be featured by the same organization. And he was chosen for the same month as our beloved Beckett. Because we have a special bond with the Spencers, we asked them to come be part of our Go Shout Love experience. I don’t want to spoil anything, but there are a few podcasts we recorded that day that have some special content.
The website is GoShout.Love. If you find yourself with a few minutes this month, go check it out. Miller will be the first face you see on their homepage during February – the month of love!!! There you will find a video, his story, merchandise, and podcasts. We will be sharing “a day in the life” on two Fridays of the month, so be looking out on the Go Shout Love social media platforms for that. We’ll try to show you what Miller’s days look like from start to finish, but we’re no production crew, so don’t expect too much. 😉
AND we have some very special people in our lives that have pledged to donate 100 T-shirts worth and have challenged anyone with the means to do the same to do so. They ended up sponsoring the month of Miller, so you’ll see Battles Home Improvement on various posts. Please consider calling them if you need any sort of home improvement. Josh worked for them for years and we adore their family. We’re also related. 🙂 But how amazing is THAT!? You’re able to purchase a shirt or make a donation on the site here.
Now, while we’re in this season of celebrating and rallying behind our special boy, bear with us. These very special, very unique, very rewarding experiences are wonderful, but they also require us to be extremely open and vulnerable. When we were first dealing with Miller’s health scares and diagnoses, we did so privately. We didn’t want to broadcast his struggles – or our own – because we weren’t ready. We didn’t share of his time in the NICU at Hendrick, and that was a full month! We didn’t share when his pediatrician raised concerns about his muscle tone and development at eight months. We didn’t share many details during his first hospital stint in Dallas and the unofficial diagnosis. We didn’t share his official diagnosis when we got it. We didn’t – and don’t! – want Miller’s diagnosis or health to define him. We didn’t want it to define us. We didn’t want to face what it meant for our family. It’s terrifying. We still struggle with what the doctors tell us our future looks like. So, while we’re allowing our boy to shine the way we know God intends, please know this isn’t always easy for us. Since he is currently unable to speak, we attempt to be his voice – but we all know he has his own.
A fellow Leigh’s momma, Heather Thornbury, shared some words recently that struck me. Her daughter, Arden, is seven and battles yet another form of Leigh’s.
“This too shall pass isn’t a part of our journey. As much as I know that… as much as I think about our future and what the inevitable is yet try and block it out… as much as I say to others what will happen to Arden and our family – it is something that I struggle with daily. I will never accept it. I won’t be prepared for bad news even though I know it will happen. It will happen more as she grows older. It’s a dark cloud that hovers constantly.
I usually do not share things like this because who wants to talk about the fears or the unimaginable truth we know we will face at some point in time. Who wants to hear all that? I’m strong. I know this. I’ve been through a lot in my life. More than most of you know. It has always prepared me for the next chapter. For that I am thankful.
PTSD is real. You don’t have to be on a battlefield to have it. Every cold, every time we have Arden endlessly crying, every time she shows any sign that something may be off – it’s amplified within me. I have anxiety constantly wondering if this is the time the rug is pulled out from under us? Will this be the time we miss something? Will this be the time that sends us back to the ICU, put on life support, or that leads to something I hate to even mention? It’s not fun. It’s often scary and very isolating. Very few people in our world truly get what we go through. Truly understand the weight we carry, the struggles we face in the fear of the future – because ours is so much more obvious. People can share kind words and show their support and that will help carry us through, but again – this won’t pass.”
We feel these emotions. We choose to trust the Lord over our doctors, even though they are doing their best to help our boy live his best life. As we face this giant, we ask for grace. Isn’t that the point? To give our loved ones grace as we face our own giants? GSL couldn’t have captured our feelings more accurately – we want and need our loved ones to see beyond the giant we face. Let’s all commit to “see beyond the giant” we each face as we shout love for Miller in the month of love.
I ask for a few prayers for today:
- Miller slept late and woke up with a fever. We are/were planning to go to the San Angelo Rodeo today for his first time! But that all depends on how he’s feeling and what is best for him.
- On Wednesday, we have an EEG scheduled in Dallas to check on him and potentially remove one of his medications as a result. We’ll keep you posted and explain more as it comes.
- And we ask that God is able to use this month of love to further his kingdom. Pray that we allow His love and goodness to be at the forefront of any and all information shared about Miller and our family. Pray that we use this as an opportunity to share with others how much they mean to us, how much love we have for them, and God’s love.
Thank y’all for your love yesterday, today, and tomorrow.
Love,
Josh, Jac and Mill