This… this, now

I can see it all… the way his eyes light up all blue and the widows peak defines his face so distinctly. How he stands fearlessly in the water, splashing, jutting his bottom jaw out just slightly. Throwing water over him in a shimmery, watery arc, glistening in the sun. The way he accidentally splashes water right into his face, tries his best to wipe it off and then goes back for more. Thats my Ely! Adventurous, fearless, mischevious, curious, joyful.



I watched his grandma, grandpa, aunt, and daddy look on with love, being sure to cheer for him on command, and Ely will command! They took pictures, video, anything to capture the moment… to make sure we didn’t miss it, wouldn’t forget it.

Nothing spirals you into living in the moment quite like the type of news our family has had to hear. And today we had to hear it again. Our baby, our Ely, is also affected by this monster we call Batten disease. He will follow in the same path as his brother. As I spoke to our genetic counselor today in our 2 minute phone call, my first word was a devastated, “no…”, and next, “what now?”

Both of them, Lord? BOTH OF THEM, LORD?

I’m thrown into a spiral of deep sorrow, collapsing on the sidewalk in front of my inlaws house, sobbing. My sister in law was immediately by my side, only down to visit us for one full day… this just happened to be the day. I called my husband to break the news. He rushed back to the house and we began to relive what we just did 2 and 1/2 short months ago with our oldest. Our worst nightmare. And I still have that question. What now?

What now?

Oh the amount of loss we are experiencing in a single moment is too much, crippling in the cruelest ways, tearing all control from our fingertips.

What now?

The tears don’t stop… happy moments, sad moments, they all tweak at the heart the same now.

What now?

The lies running through my mind telling me I must not have what it takes to parent a teenage boy. The pain I feel when I see other children achieve what my children never will.

What now?

The only answer resounding in my heart is this moment now. Right now. This… this now.

This… where my son grabs his bottle and curls up next to me.

This… where he demonstrates his hard headedness and throws a fit complete with hitting, screaming and throwing himself to the ground, and usually engaging in this behavior in a moment that ensures a larger audience than just my eyes.

This… where he growls “daaadddaaa” every time daddy comes home from work.

This… when he snuggles his head into my neck as we dance around the room singing our bedtime song.

This… when he grabs his shoes off the rack, showing us he’s ready for an adventure, any adventure.

This… his love for people and the way he can engage with each individual with a twinkle in his eye.

This is where I live. I’ve been living in “this-land” for a while now. And what is being defined in a clearer way all the time as I occupy this state of mind is thankfulness. Not the polite, “thank you so much” kind of thankfulness, but an unfiltered, emotional sort of thankfulness that is full of pain and full of joy. And yes, those two things can happen in one’s heart simultaneously. I feel this thankfulness to my core. Each moment I am in, I get to keep. I’m not so sure about the next one. So, here now, for this now, thank you Lord.

Getting my kisses!
Getting my kisses!
Playing hard... he knows no other way
Playing hard… he knows no other way
One of my favorite moments of my boys laughing together
One of my favorite moments of my boys laughing together

These moments are precious, friends. The small moments… they are the ones that become really big moments. Don’t miss them. Don’t let them slip by.

Thanks for listening…



23 thoughts on “This… this, now

  1. I listened….. thank you for sharing your heart to us all. Your heart and your pain is unbelievably great…… It pains my heart to even think what you are going through. Jesus, please bear it all for Bekah and Danny. Embrace them in your loving arms until they feel your presence to their core. Continued prayers to you, my friend.


  2. (((bekah))) my heart breaks…just breaks. Tears are flowing with you. We will continue to keep you all in our prayers forever. Emi says every night “God bless Max, Leo, Emi, Mommy, Daddy, Titus and Ely and all our friends and family.” ❤️❤️❤️❤️


  3. (((bekah))) my heart breaks…just breaks. Tears are flowing with you. We will continue to keep you all in our prayers forever. Emi says every night “God bless Max, Leo, Emi, Mommy, Daddy, Titus and Ely and all our friends and family.” ❤️❤️❤️❤️


  4. We definitely look at things differently when we have a child with Battens, don’t we? You are so right on with the words “this moment…this is now”, and isn’t that really all any of us have? It just takes a diagnosis like Battens for us to realize it. Our son changed his address to Heaven a year ago on Feb. 9, 2014, and we only had his diagnosis for 2 years before he left us. I wonder so many times if I’d known when he was your boy’s age if I’d have been a better parent, cherishing each & every moment we had with him? Maybe, but maybe not. Maybe I would have been too over-protective and not allowed him to do all the things that he did in his short life. He lost so much over the years, physically, but we gained so much just by knowing him, seeing his love for life, his courage and determination to live as abundantly as he was able for as long as he could. I thank God every day for each moment I was blessed to be his mother here on earth and look forward to seeing him once again as he was before Battens took control of his body. Although my heart aches for him each day, and I will miss him until we are reunited for all eternity, the thought of him once again standing tall and proud, with his vision restore and that old light back in his eyes that we hadn’t seen for years, and his excited chatter once again telling us about all the great discoveries he’s had since he entered heaven; that thought keeps me going and makes me realize that he’s still alive, more alive than he’s ever been and just around the corner, a few steps ahead, waiting for me to join him. So, live in the moment with your boys, and write them on your heart. Pray for healing to come, but if the time comes to let them go, gently release them into God’s arms where they will forever be as you see them right now. May God give you strength for your journey and peace in the knowledge that He holds the future in his hands, and we just have this moment today to live, love, and laugh in!

    Liked by 2 people

    • Thank you… Beautifully said, so hard to read. But thank you. It all hurts, but the comfort I have in knowing the next thing for my boys is Jesus’s arms… Well, that’s hard to compete with. Couldn’t ask for anything better for my sweet boys. Thanks for sharing your journey on the urgent side of this. It helps to know it’s possible to survive this. Love to you!

      Liked by 2 people

      • This moment, right now. Yes, that’s right. This is the best advice, embrace each moment for every moment, every day is a gift. I am sure you will give these boys the best for each day. This burden is great, but your boys are not alone. You are not alone. Loving, devoted family, friends and community. Your boys have a lot of supporters, as do you.

        We lost our Kelsey in April, 2014 from Lafora, also a PME. Spent many days, even weeks at CHOC. We likely walked the same halls at CHOC.

        We are close by, in Tustin. Reach out if you like, we are always available for your family.

        Frank and Bridget Harris
        parents of Kelsey Harris


  5. I just have no words…no words…only the utterings of my heart’s cry…understandable to the One who understands all.


  6. Bekah, we don’t know each other well but my breath just caught as I read your blog. I can not imagine the emotional rollercoaster your family has been on and now to know that your youngest son also has the same disease. I am so sorry. God is there to do all of this with you. And by reading your posts, I know you know this! You are an inspiration and witness to so many of the indescribable, incomprehensible strength that God will provide if we will just allow Him to. Thank you. Thank you for your honesty in the face of such heartache. We must savor every moment.


  7. You and your family are in my prayers I pray you continue to experience joy. Thank you for bravely sharing your story. Sending love.


  8. Bekah, your words break my heart and at the same time brings me thankfulness that God has given you moments of peace and joy in the midst of tragedy. May God continue to give you strength!
    Love and prayers to your family!!
    Shannon Hemphill


  9. Thank you or your beautiful, God-honoring, heart-wrenching blog. My heart goes out to you. When the time is right, I encourage you to see support from David & Nancy Guthrie of Nashville, Tennessee, who also lost two young children. They minister to couples through weekend retreats, as well as through other resources.

    May God give you grace for each new minute as it comes.


  10. Just realized my mouth is agape. It’s been that way 10, maybe 15 minutes, the time it’s taken me to read back through your posts and learn of the unbelievably difficult road you are traveling — and the incredible faith you have chosen to bring with you on the journey. It’s been a jaw-dropping 10-15 minutes. I’ve been a believer most of my life, but I honestly can’t fathom faith like yours. I can only wonder at it, marvel at it, and thank God for it. I pray that He will continue to provide strength to you and your husband and the boys, and that, against all odds, you would continue to find joy. Blessings, Bekah.


  11. I will be praying for you and your family. I’ve been reading this blog for years now.
    She and her husband lost a child to SMARD a genetic disorder as well. She lost a second baby in utero to the same disease even though there was supposed to be a 1 in 4 chance. (They now have a healthy baby boy conceived via a sperm donor which you will see on the blog.) Despite the different disease it seems like you may have a common bond as there are only so few who know the loss of a child. Again I am praying for you and your family and for the comfort and shelter only He can provide!


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