Remind me again, please

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that won’t disappoint. 

He keeps his promises.

He will redeem.

These statements have been running through my mind a lot lately. This month has proven to be an emotional roller-coaster for me. I found myself scribbling these truths up on the giant decorative mirror in our dining room because I needed to be reminded… often. Truth needed to be spoken to my soul, over and over and over and over.

Today, my baby sister and her hubby celebrate 3 years of marriage. Flashing back 3 years ago, I had barely made it to the wedding flying in at midnight on Friday night with little Ely in tow. It was supposed to be the whole family on the trip, Titus given the honor of ring bearer and I, the matron of honor. But circumstances didn’t line up as such and we left Danny and Titus back home occupying a room on the neuroscience unit at our children’s hospital. Titus had been hospitalized, yet again, for uncontrollable seizures. He spent long days there as they quickly weaned him off one medication to put him on yet another in an attempt to gain control over these seizures. It was heartbreaking to leave them behind. Ely and his cousin, Colby, did a wonderful job standing in as the ring bearers in Sarah and Michael’s beautiful wedding and we flew home at 6 am Sunday morning to be reunited with the other half of our little family. I remember arriving home, knowing Titus had just gotten discharged. Danny had made an extra stop before heading home to buy kites. (This was one of those moments I constantly thank God for gifting to us and prompting Danny’s heart in this way.) We joined them out on the big grassy park right by our house and watched daddy fly a magnificent shark kite. Neither of them had ever seen a kite before. I will never forget the excitement, awe and pure delight exploding out of each of our boys and it was contagious. I felt it too.

We had just plowed through one more obstacle to help our little boy and we celebrated that, but deep down in our guts we were unsettled, feeling as though something was coming – that we weren’t in the clear. We’d learned by then to enjoy the moments, but not to let our guard down. That year, 2014, Titus was the same age Ely is now. We had no idea what was actually lying in wait in both our boys’ bodies.

My heart aches for what could’ve been had Titus received an early enough diagnosis to get in to the enzyme replacement trial that opened just shortly after that kite flying day. But we didn’t, he didn’t. We had no idea what we were facing. And I constantly have to come back to…

“This is temporary.”

“God will redeem!”

“He promises a hope that won’t disappoint.”

“This isn’t over,” I say to myself as I ponder that beautiful memory 3 years ago. Titus’s story has not ended and someday we’ll be together with Christ in glorious bodies – perfect without disease! That day will come. And in the meantime, redemption is here too.

God gives us joy in the midst of heart pain.

He gives us peace in the middle of turbulent waters.

He gives us strength under weighty grief.

He restores my soul when the circumstances of this world and my own destructive patterns shatter it.

He gives direction and a sense of purpose in a dark pit that feels impossible to move from.

These are all signs of his love, his involvement, his redemption. This is God. Here and now.

So, until the day all is fully redeemed and restored whole…

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that will not disappoint.

He keeps his promises.

He will redeem.

May truth hold our minds, hearts and souls captive in the midst of our heartbreaks, disappointments and sorrows.

Thanks for listening,

Bekah

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Truth.

Hi Friends. It’s been quite the couple of months. Our Christmas celebration was absolutely incredible, but I had to recover. To be completely honest, it’s been hard as new things have begun to pop up in my mind of plans we will need to consider for Titus in the future. And, as much as I’d love to say I’m always kind and loving, my selfishness and defensiveness have gotten the best of me because it hurts to let my guard down when it means I might not ever get it back up. Ever get to that moment where your brain just goes on overload and then quits working all together? Pretty sure I’ve been there emotionally and spiritually. And then yesterday morning, God met me, like He does… as I sit to listen knowing full well my ears are plugged and I doubt I’ll hear a thing. And instead of speaking to me through my ears, He speaks straight to my heart. So I needed to share…

I know truth. It’s in my head and usually in my heart, but how steadfast is it? Does truth flee as soon as my anger flares? My physical needs aren’t met? My fears come alive?

I’m led to Matthew chapter 3- the temptation of Jesus. He was alone, hungry- like 40 days and 40 nights fasting kind of hungry, just in the beginning of His ministry, and along comes Satan tempting him in vulnerable places. I’ve read this passage of scripture so many times. I am always in awe of Jesus and His ability to say just the right thing back. This time though, God allowed me to see something new. Truth. The steadfastness of Jesus’ replies- He zoned in on the lies so fast and answered back with resounding truth.

I have so many days of being worn down. Might be the result of a sleepless night, too many doctors appointments in a week, not eating right, arguments with my husband. Or sometimes all I can say is that I’m spiritually exhausted. I’m run down. Satan has been beating me down little by little and there are days when the truth minimizes and my selfishness maximizes. Truth becomes the unfocused background in my picture of life and rather than turning my lens to see truth clearest, I focus on self. On my needs that aren’t being met. And then I start getting angry. About life, about the disease, about all that has come upon our family. But rather than turn to God to be filled with truth, with hope, with peace, I turn to my bitterness to be filled with depression, anger, and joy sucked away. The way I go about my day begins to feel lifeless. All I can muster the energy to do is watch the clock tick by. My God given gifts are frozen in time, something locked away that I can’t fathom accessing… too much energy, way too much. My boys get a shell of me. Going through the motions- detached because, well honestly, right now, to truly attach and feel takes more energy than I have and it’s too hard. What has become of this joyful spirit in me? Where are you now, God? WHERE ARE YOU NOW? I’ve yelled this so many times.

Always,

Always,

Always, my heart is wrapped in a quiet presence. I break. I’ve been standing “strong” for so long, but really that version of me is a hardened empty shell that symbolizes strength in the world’s eyes, but not in My God’s. My God is okay with emotion. My brokenness welcomes Him, it does not deny Him.

And his response to me?

“What do I ask you to put on each day, daughter?” Of course. I turn quickly to a scripture that has impacted my life over and over again. Ephesians 6:10-18. The first part of that scripture? “Put on the belt of truth…” I whisper. I feel the gentle reminder that I have forgotten to put mine on.

Truth: I am loved. Still. Always. Even in my ugly selfishness. Even in my drowning depression. Even when my smile doesn’t meet my eyes. Even when I check out of life and check onto Facebook. Even when I say hurtful things to my husband simply out of my own insecurity. I am loved! I let that take root in me. When I remind myself that I am loved in those moments, lies cannot weave around my heart.

Truth: He is faithful! I can look back in my life, even to yesterday, and tell you how He provided exactly what I needed to get through. How He continues to do as He said and has given me new perspective, a heart that feels deeply for others hurting, a love for my family that goes beyond love we are capable of on our own. He amplifies all that is good! I see my son do a silly dance in my own eyes and yes, it’s funny and sweet and I love it. But when I see through His love in me, my joy in that moment is bigger, more satisfying. And yes, there are usually tears (and I’m far too guilty of holding them back more times than not… I wonder where we’d be if we allowed ourselves to fully feel). But they are from amplified emotions because I see God in it all. He reminds me that He is here. He never left. He is good. He is redemptive. These are all promises that He faithfully keeps.

Truth: This world is not all there is! We fight a very real physical battle against Batten Disease in our life. It’s easy to focus on the disease, the constant care, the fact that my boys are not getting better. When I forget the truth that we are here temporarily, I get so caught up in the fear of death, of loss, convincing myself that if I’m not fighting for my child to survive in this world, I’m not surviving either. But what we experience here on this earth is not a temporary spiritual experience. It is a temporary physical experience because there is more! So much more for my Titus! For me! For you! And that is truth! Our reward for fighting the spiritual battle here is not death… It’s the crown of life! Life with no pain, no sickness, no depression, no anxiety. No Satan- you cannot have your way with me here. My son- he will gain when he leaves this world. That fear you are using to grip my heart even now, in this moment as I write, telling me I won’t survive his loss, I won’t have anything left, I’ll be an empty shell… well, you’ve tried that already. And, as tears begin to fall again, I’m telling you to back off and get out, in Jesus’ name! He has continued to prove that what you think ought to break me down has in fact done the opposite.

“Dear brothers and sisters, when trouble comes your way, consider it an opportunity for great joy. For you know when your faith is tested, your endurance has a chance to grow. So let it grow for when your endurance is fully developed, you will be perfect and complete, needing nothing.” James 1:2-4

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My little bundle of joy in the face of many hardships

Truth: I am not living these hard days to survive in this world. What reward is there in that? There will always be hardships. Always be struggles. I live in this world to discover more about my Father, His love and to love others as a result. And life we will gain! All of us!

When there is absence of truth in my life, I’m at the mercy of whatever my circumstances and emotions feed me. There is no strong foundation to filter them through. I am up, I am down. I have no control- no, in fact- they control me. No more. Hold on to truth! I am loved! He is faithful! There is more than this broken world! So, today, let my belt of truth glisten strong! Let my experiences today be seen through the truth of love, faithfulness, victory! I pray truth for your life as well, friends.

Thanks for listening…

Bekah