Some weeks are definitely harder than others when we’re walking this road… in Holland.
(If you’re lost on the Holland reference, read this.)
Over the last couple weeks we have lost three beautiful children previously diagnosed with Leigh Syndrome – Jamie, Angelina, Beckett.
As much as my marketing brain wants to keep this blog light and airy and informative for you, our audience, my momma heart knows that’s not possible. This road was not our choice, but it is our life; and sometimes it’s just not fair, but it is always beautiful.
After publishing the first G&G blog back in September, I found my way to a beautiful friend named Katie. She and her husband, Tyler, have a little boy named Beckett. Their story seemed very similar to ours and we connected quickly: Katie and Tyler went to Texas Tech. They welcomed their first child, a beautiful baby boy, into their family just months after we did and received a devastating diagnosis like we did. Beckett’s time on Earth ended Thursday, April 12, 2019. While we are rejoicing, our hearts are shattered.
Katie and Tyler are absolutely the BEST parents God could’ve chosen for Beckett Man. They fought for him, loved him – even created a bucket list for him, and they did their damnedest to give Beckett as many experiences possible. In his celebration of life today, the pastor said he imagined Beckett being welcomed into Heaven and it feeling familiar to him because he was surrounded by so much love by his family and their friends. Naturally, as I am writing this, the song “Well Done” by The Afters came on. What a *perfect* song for Beckett!
We know the fragility of this diagnosis all too well, but this week put it in a whole new light. We take the days one at a time – we have to! We can’t allow ourselves to think about what could happen or what might be coming because that steals us of the joy of today.
Back in March, Miller came down with a stomach bug and was unable to kick it. We ended up spending a few nights at Hendrick where the sweet nurses are becoming more than friends.
Since we left the hospital, Miller has been doing great and we are grateful. It had been almost a year exactly since his last hospital stint for pneumonia. We do our best to support Miller‘s immune system at home with a variety of supplements and oils, but sometimes an IV of fluids and/or antibiotics is necessary to help him over the hump. With most Leigh’s kiddos, hospital visits are common as they are unable to overcome common illnesses on their own. These kids’ mitochondrial mutations cause damaged cells to produce less energy, and as we all know, being sick causes even the healthiest of humans to take a time-out from their daily routines. Our kiddos need that and then some.
So unfortunately, hospitals are always going to be a part of our life. Additionally, we have annual appointments coming up in Dallas. We ask for prayers as we anxiously await those check-ups, tests, and results from cardiology, pulmonology, ophthalmology, and neurology.
As we try to balance the reality of Miller‘s diagnosis and a “typical“ life, we are doing our best to help Miller live a full life no matter how long we get to keep him. He’s had a pretty exciting spring so far!
We traveled to San Diego in March for work but managed to fit in some quality family time. He even got to feed a seagull.
VIDEO: Miller feeding a San Diego seagull
This kid is becoming a flying pro. We take his car seat so he’s comfy and set him up with his favorite, Tom & Jerry. Is it just me or does he look five in these pics?! 
Pops got Mill some stylin’ Culligan Water shades. 
Miller’s Godparents, Andrew and Kaitlyn, gave him the gift of “Godparents Day” for Christmas. They took him to the Abilene Zoo and spoiled him rotten while Josh and I played hooky.
(Flashback! Family Reunion 2017 with Jillian)
We are headed to Inks Lake to see our cousins Jillian and Tristan in from D.C. and Campbell from DFW tomorrow and rounding out the weekend in Coleman County with Josh’s family (more cousin time!) and some of our besties for Easter.
A couple years ago at Easter, we heard Josh‘s cousin, Mayce, sing in the church where Josh grew up and Miller was baptized. Before she sang a beautiful version of Amazing Grace, she said “Life isn’t fair, and thank God it isn’t.” I think about that comment a lot: It isn’t fair that Miller faces these challenges. It isn’t fair that Katie and Tyler have to move forward without their sweet boy. But it also isn’t fair that we sin and receive forgiveness. It isn’t fair that Jesus died on the cross for our sins. But thank God he did.
He is risen! He is risen indeed!
We hope you all have a safe and hoppy Easter. 🙂
Josh, Jac & Mill
You all are great parents!!! Love that you share with all of us.
What a special Miller man. Yes, life isn’t fair, but I’m glad God gave you both Miller. He touches so many lives.
Miller and his family remains in our hearts and prayers.
RIP Jaimie, Beckett and our Angelina. You are so right, Life Isn’t fair but Angelina’s short life was packed full of love and adventure. We’ve learned so much from these kids and Angie taught us more than most can learn in a long life time.
Keep up the great work and play you are doing with Miller. I can see how much he is loved and loves. Nothing can take away the wonderful moments you have with him. Advocate. Teach. Love.