Here goes nothing.

Posted on by Jacque

(Deep breaths, Jac. Deep breaths.)

I guess I should introduce myself? I’m Jacque Thweatt. I live in Abilene, Texas, with my husband Josh, our son Miller, and our (not-so) toy Aussies Alli and Marley.

I’ve been feeling a tug on my heart to share Miller’s story, so I prayed. I prayed for the words, the avenue to deliver, and that my very private husband would be on board. And a couple weeks ago – by the grace of God – he (Josh) was in full support. So I figure it’s go time.

I have put this off longer than I care to admit because I was afraid – afraid to share something so personal; afraid to put it out there in my own words; afraid it wouldn’t be good enough; afraid it’ll be all anyone wants to talk about when they see us; and afraid because words have power! And I don’t want to give power to something we are praying against. But FAITH OVER FEAR. And I learned recently doing something is better than doing nothing, and ya gotta start somewhere. So I’m not sure what this space will morph into, but right now this is Miller’s story from his momma’s point of view. And before I get in too deep, I have to give a shout out to my tribe, an acknowledgement if you will:

    our families – especially our mothers, Lorri (Yo-Yo) and Laurie (Gigi) for committing their time to be with us;
  • my girlfriends Amberlea, Kaitlyn and Tessa – you gals have been my rock. You have been the voice of reason, shoulders to cry on, my go-to prayer warriors, my support system for making this very vulnerable topic very public, and for guiding me on how to create and brand this space for our precious Miller Man;
  • and to Josh – life has certainly thrown us curveballs, but I’m grateful we have each other to lean on, pray for/with, and celebrate the inchstones alongside. We have had our faith shaken, but we are coming out on the other side holding to our truth: God is good.

Let me throw in a disclaimer: I write this not for sympathy, but maybe grace? Certainly awareness. And for whatever plans God has in store. Life is certainly not taking the shape we expected, but we’re learning. When you arrive in Holland packed for Italy, ya gotta adjust. More on that later.

So here it goes: We have alluded to small pieces of Miller’s journey via prayer requests and social media, but I know God has big plans for our boy and it’s time to tell the full story of our little giant slayer. Even compiling my thoughts for this initial post has me in tears. I don’t know why, but some days are extremely difficult to talk about all things Miller, but in others I can do it with a smile and a funny Mill story.

There’s a saying, “Tough times don’t last, tough people do.” And our boy is the TOUGHEST. On February 28, 2018, Miller David Thweatt was diagnosed with Leigh Syndrome, an extremely rare, mitochondrial disease with no cure and no treatment. We heard the word “terminal” on that fateful day, which was ironically Rare Disease Day. In the nearly seven months since that diagnosis, we have learned little more about the disease itself, but we have connected with other Leigh’s parents, we’ve felt the love of our community and the deep grief no parent should experience, and we’re finding our new normal. There are SO MANY BIG THINGS GOD IS DOING in our lives, and I hope this space conveys that. It has been a rough year… really rough. And now as I’ve only gotten to scratch the surface, my eyes won’t quit watering. This boy is our life. He is amazing and happy and stubborn and strong and works harder than anyone I know to achieve what he has achieved. I am so blessed to be his momma. He’s taught me more in his 22 months than I could ever imagine, and I can’t wait to share more with you. But for now, I’ve gotta go. We are headed to Dallas tomorrow for a follow-up EEG and appointment with Miller’s neurologist and that means we gotta leave E-A-R-L-Y. (And that’s not really my jam.)

If you’ve gotten this far, I thank you. There will be more to come as we share Miller’s life thus far and as we watch God’s plan unfold. I invite you to learn more as we do and to join us in prayer that he gets healthier and stronger and smarter every day we have him Earth-side. And I ask forgiveness in advance for any and all typos.

Much love to you all,

Jac

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40 Replies to “Here goes nothing.”

  1. You did a wonderful job writing this. I know it is so hard to do but you did such a heartfelt story.
    You are always in my prayers and thoughts. Wish I could be with you all more but it isn’t to be.
    Love you all more than you could ever know.

    Meemaw

    1. Thank you, Meemaw. Miller Man loves you BIG. We can’t wait to celebrate you in a few short weeks and see Miller love on you and Melvin. Hugs!

  2. Oh, Jacque I had no idea you guys were going through this pain. All my love and prayers to you and Josh and your families. Martin and I will add you to our, sadly growing, prayer list. Sharing your story hopefully will help relieve the burden you guys have been carrying alone (with exception of a few) and allow for more love, prayer and uplifting for you all. Love you lots, Shay

    1. Thank you, Shay. It is pretty nerve-racking to put it all out there, but our boy has God on his side and people need to know! We will take all the prayers you’ll offer up. Hope to see you soon with CBB getting close!

  3. Jacque & Josh, thank you for allowing us to come along side you on this journey. Know that your words are going to encourage others and also provide an avenue for people to help your family. God is going to continue to do amazing things through Miller. We are grateful that you and Josh are glorifying God through this storm. It is always refreshing to see people of faith show that not everything in this life of following Jesus is going to be sunshine and rainbows, but that sometimes (more often than we would like to admit) following Jesus means walking through the shadows. Grace and peace to you and your family

    1. Thank you for that. This Goliath is pretty big, but our God is bigger. And He’s doing big things in our lives. I’d like to say our faith never wavered, but it did. But God is strong enough to allow us that, and He’s been consistent in His love through our tribe and community as we navigate this new world.

  4. Jacque and Josh. I am so proud of you both for sharing Miller’s story. He has touched so many lives already with many more ahead. You are an inspiration to me to value each day and to acknowledge the small things in life. We are here for you always. May God bless you all.

    1. Thank you, Daina! You and Rick have been so good to check on us and love on us from afar. We can’t tell you how much it means. We love y’all.

  5. I cannot fathom the challenge before you. May your faith sustain you, friends encourage you and family love you as you face your “Goliath” with grace.

    1. And I love YOU, G.I. Jane. I’m ready for a hug and a glass of wine when you are. And maybe a dip in your pool? I’m not inviting myself am I?

  7. You and Josh and Miller are in my prayers daily. I love you all dearly. Every time I see Miller he has gotten stronger and achieved more and more. He’s definately not a quiter just like his mum n dad.

    1. Miller is a big fan of his Grunkle Debbi! As are Josh and I. We are so grateful for your love and support (and quesadillas!). 🙂 Our Miller is a strong little fighter thanks to love and prayers and family like you.

  8. This is the most thoughtful and amazing post. Tears were flowing with you. My grandson has Lowe’s syndrome which is similar to what Miller has been diagnosed with. Cherish every day, smile and accomplishment with your beautiful, special child. Miller is so darned cute and I love seeing pictures through my sister Debbi Riedel. Your family stays in my thoughts and prayers. I look forward to your new posts. Give Miller a hug for me.

    1. Peggy, this has already taught me something! I had never heard of Lowe’s but I have now researched it and am a little more in the know. I’m so sorry for his diagnosis and all that means for your family. Thank you for sharing. We sure try to cherish every day, every smile, and every milestone. I appreciate your kind words and look forward to hearing more about your grandson!

  9. What a great way to not only be able to express your feelings, but to give encouragement to other families that are also going thru this. You know that all of us are praying for all three of you. I have several people that are also praying for all of you, all over. Can’t wait to see all of you in November.

    1. We sure hope so – that this helps other families as well as our own. Thank you for all of the prayers. We’ll see you and celebrate Meemaw!

  10. Jacque, thank you for sharing Miller’s story & we will be keeping him in our prayers. He is certainly one handsome & very special little boy!

    😘 Kandon

    1. Thank you, Kandon! We think he’s pretty great, but we’re biased. 😉 We really appreciate the prayers. Give those adorable kiddos a squeeze for me.

  11. Powerful, sister!!! Whoooo mama! Love y’all so much and continuing to pray for Miller man! We love y’all!

    Brittney Jay!

  12. We have prayed for baby Miller and continue to pray for strength and wisdom and God’s precious peace for your sweet family!!!

  14. Jac, I can’t imagine what you and Josh are going through. You are in our prayers daily and our thoughts often. I know you have a village but just know you have us too. We may not see you often with the craziness that is life, family, and miles between us but we are here for you all and that has never and will never change. Though we may not see you in person we are always only a phone call away.

    Love you

    1. Thanks, Whit. We love you guys. I’m grateful that years and miles and life can’t change anything. Hug your girls extra tight for me.

  15. What a powerful story Jack Attack. Baby Miller will be in Panissa and my prayer’s going forward. We love you guys and only want Miller to happy and healthy. Whatever we can do, we will be here for you guys!

  16. Very well written Jacki. I have to agree with many other responses and tell you how brave and strong you are for sharing this. God has great plans for your little family, and great plans for Miller man. He will see you through and we will pray daily for you all. Even all the grandparents and especially one I consider a great friend.

    1. Thank you, Millie. We agree – God has big plans for our Miller Man! We just want to share those plans with those that love him. Thank you for the prayers. We’ll take all we can get!

  17. Such a moving story. God is IN this and he will be with you each step of the way! Keep the Faith!

  19. You and Josh are amazing parents. BB and I loved getting to know you and getting to meet your happy, joy-filled little Miller! You know, if we all looked at life from the perspective that we have limited days (which we do) and lived life OUT LOUD and FULL OUT we would be better for it. God has given you the opportunity to embrace every moment and capture every smile. Praying for you all!!!

    1. Thank you, Jan! It is bittersweet knowing our days are limited, isn’t it? Miller is such a joy. We’re grateful for your prayers.

  20. Jac, I’m so proud of you! I remember the day you told me you were expecting, I probably ran all traffic lights to go get you some small gifts to let you know how excited I was and I must say I was overprotective of you and you were my manager, lol! One thing I can say, although we worked together we always shared our faith and wasn’t worried about what anyone had to say about it and just thinking of that makes me believe the best is yet come for Miller! We are always praying for you all! Love Brina

  21. Jacki and Josh, I commend you for sharing your and Miller’s journey. I realize it is at times hard and awkward to share, believe me, you will, in the long run, feel much relief in doing so. I understand what it likes hearing a diagnosis of a rare fatal disease with x years to live. I truly believe Our Lord Savoir is the guider of our destiny. So long as we believe this with all our heart and soul, determination, strength, bullheadedness, the will to live will be stronger than you could ever imagine. You three have many ruff trails ahead please know we are all there for you in person,
    thoughts, and prayers. Blessings and Laughter,
    Debbie Kleypas & Family

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