Mary Oliver, poet and Pulitzer Prize winner, wrote: “Instructions for living a life: Pay attention. Be astonished. Tell about it.” That’s what we’re working to do here. Sunday our pastor made a statement that struck me as exactly how we feel about our life right now. I didn’t write it down, so I know it isn’t word for word.
We experience miracles in life while waiting for THE miracle.
Pastor David McQueen, Beltway Park
This is the Thweatt life (please read “sweet life”) right now. So many BIG things are happening and my mom said it best the other day when she told me “You better stay out of the way – God’s doing big things!” And boy is He. This is no different than to echo my dear friend, Terry, months ago – it’s like she knew all along. I was expressing concern for the impending attention coming our family’s way and she told me, “God has big plans for Miller. You better get out of His way. This isn’t about you; it’s about Miller.” And she’s absolutely right.
It would be remiss to leave out that we have our moments or even days of sadness, frustration, anxiety, fear, and doubt. And they’re frequent, albeit less than they were even six months ago. I feel hope and mourn at the same time. I get so excited seeing Miller do something new, while silently and briefly processing how hard he’s worked for something that comes natural to most. Please don’t think we’re these amazing people that unfailingly trust the Lord and follow His plan every moment of every day. We don’t. We probably never will. But we ARE doing our best to “get out of His way” as we embrace all that this plot-twist of a diagnosis is bestowing upon us.
We witness miracles – be it by the hands and feet of Jesus – nearly daily. I want to share some with you:
1. Last blog I asked for prayers for the upcoming EEG we had scheduled for February 5th. Weather and illness happened so it took place on February 12th and we got the results February 26th. Waiting is not my favorite. I shared a couple reasons we wanted this EEG to take place:
- the less meds the better in that his body is functioning typically and not having to process the medication if not needed, and
- this particular med costs an insane amount.
We got some bittersweet news. The important part is that Miller is NOT having seizures. However, based on the results, the neurologist wants to keep Miller on his current medication until we meet to discuss this summer at his annual appointment. It’s not the news we’d hoped for, but we are extremely grateful he is now TWO YEARS SEIZURE FREE and stable. This is huge. Huge that he has not only gotten better with the medication he’s on, but that he hasn’t developed any additional types of seizures. Praise! So until further notice…
This won’t be the case once we meet our deductible, but the first refill of each year is stout. Apparently there are gold flakes and unicorns in this stuff. But it works, so it’s worth every penny.
2. Josh and I have taken a step to begin a program at our church to work on our marriage. Did you know 80% of marriages with a special needs child end in divorce? That’s a leap from the national average of 50%, which is still devastating. We are determined that won’t be us. In the first few weeks, we’ve already noticed a shift and we couldn’t be more excited for the future. God has worked in our hearts to work on our marriage. Can I get an “Amen!” for His nudges to be proactive and for us to both be in the same place? Because that certainly hasn’t always been the case. Marriage takes three parties to work and we’re here for it.
3. So in this program on Wednesday nights, we need someone to hang with Miller the Man while we’re getting our work on. You may remember a gal named Mrs. Darlene? She is one of Mill’s Tuesday/Thursday school teachers who also keeps the Kingdom Kids (special needs kiddos) on Sundays during church. I asked her if she worked at the church on Wednesdays in hopes she could hang with Mill while we’re in small group, but she doesn’t. She said she knew another lady that could and would reach out. Now listen, this is more than I was expecting already. I just thought I’d ask! But she’s such a fan of the little guy that she took it upon herself to help find sufficient care for him. Next thing I know, the Assistant Director of the CDC at Beltway is calling me to say they’ve spoken with said lady to stay Wednesdays to keep Miller and she’s agreed! So free of charge, we have a nurse practitioner (married to a doctor with a special needs son) to watch Miller while we work on our marriage. I MEAN. Praise!
OK, so #4: We’ve mentioned Miller is non-verbal. He doesn’t communicate using words but he still communicates, believe you me. He’s aware of his surroundings, loves to interact with people, is curious of the world, and have I mentioned he loves to watch Mickey Mouse Clubhouse? Well, he does. He gets so into the episodes and laughs – it is the BEST. But my point is that he knows what’s going on, he just can’t tell us what he’s thinking in that brain of his. So being non-verbal, he has worked with a few different Speech-Language Pathologists (SLP) to find how he can most effectively communicate. We landed on an AAC device, which stands for augmentative and alternative communication and is any low-tech or high-tech device that provides a nonverbal means of communication. These range from picture cards to electronic devices that emit spoken words and sentences. We trialed one such device last fall for about six weeks. The ECI (Early Childhood Intervention) SLP, Kim, he was assigned last, before he aged out of the program at three in November, worked to apply for funding to get the device for him. Y’all, this thing costs over $16,000. WE GOT APPROVED AND HAVE IT IN OUR POSSESSION. Is that not the coolest thing!? I’ll share more on how we’re working to use it and more God-things through it all later, but wowza, right?!
5. I’m afraid if you haven’t seen the Go Shout Love love this month, you might be hiding under a rock in a far away land. Y’all, the LOVE has been SHOUTED. I will never be able to articulate how much this organization and every one of our loved ones has touched us. We’ve known Miller is here for a big reason, but this just seems to be bringing it to reality. His story of hope, love, joy, and determination has been shared thousands of times. We want nothing more than to bring more people to know our Lord by way of our son. We are learning more every day how much our God loves us by how He uses Miller to touch people. A boy who doesn’t speak has made quite an impact in his three years. We don’t believe God gave Miller this disease, but we DO believe He’s using it to bring His kingdom glory. This is about something so much bigger than our precious, strong Miller David.
THANK YOU.
For now, we want to thank you all. Thank you for caring about our family. Thank you for loving us so well. Thank you for praying for us. Thank you for thinking of us. Thank you for reading this little outlet of a blog we have to share the fun, exciting, scary, and overwhelming news we have about a little boy who is doing big things. Thank you for sharing the posts. Thank you for connecting us to other families. Thank you for ordering a T-shirt (super soft, aren’t they!?) or hat or tumbler so that we can make adjustments to our living arrangements for Miller to be more mobile and more independent. Thank you for the words of affirmation. Thank you for the acts of service. Thank you for the hugs. Thank you for the gifts left on our doorstep! Thank you for spreading awareness of what Miller accomplishes day-to-day and for what other Leigh’s and non-Leigh’s kiddos on different paths deal with on a daily basis.
We are deeply touched by all that has gone on in our lives lately and do not take one action for granted. Miller’s got quite the testimony of God’s work in his life. I have to admit I’m sad to see February end. It was overwhelming when it started with everything we were seeing, feeling, and sharing. But it has been so cathartic. We are still embracing the diagnosis we have been given and while the attention and support and love is wonderful, it also makes us very aware of the reality of why this is all happening. It’s scary to accept, but it has also been one of the biggest blessings of our lives. We have truly felt the hands and feet of Jesus through your love. THANK YOU so very much.
Before I wrap this up, I have to throw in this very remarkable, very terrifying, and very humbling note – February 28, 2020, marks TWO YEARS since our boy was officially diagnosed with Leigh Syndrome. For those counting, we’re about 2.5 years out from the initial gut-punch of a preliminary diagnosis. Can you take a deep breath with me and let the gravity of that sink in for a sec? The day we heard “Leigh’s” for the first time, Google told me the average lifespan for my son’s diagnosis was 2-3 years. That’s not post-diagnosis; that’s total. Our boy, my SON, is 40 months old next week. I know, I know – counting in months, Jac? Come on. But in this situation, it matters. We’re talking 24 months since we heard the dreaded words and I read the dreaded stats. We’re L-I-V-I-N in the moment for a damn good reason – we aren’t promised any more than we’ve already had. February 29th is Rare Disease Day. In 2018, Rare Disease Day fell on February 28th and it is no coincidence.
The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. The campaign seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and the general public.
Why? Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
What Miller faces currently has no cure. We are living day-to-day knowing we make the best choices we can with the information we have now while waiting for our miracle – a cure. I’ve become a strong believer in letting people know how we feel while we feel it instead of waiting until we’ve lost them. You all have done that for us, for Miller. This momma heart is at a loss for words for just how much it means to see such a tribe rise up and SHOUT love for our son. Thank you, thank you, thank you.
Until next time, much love.
<3 Josh, Jac, and Mill
This made me cry from sadness of all Miller has had to endure and the joy Miller has brought to all of us. God does have this. Grunkle Debbi.