I am a mom

What does mothers day hold for me exactly, as I live out bits of other moms’ greatest nightmares and fears? Honestly, mothers day for me has become a paradox. Confusing, too. The truth is that a part of me wants to pretend this day doesn’t happen and ignore everything in me that squeezes tight. The other part of me wants to climb to the tallest point and declare loudly my role as a mom. I am a mom!

I am a grieving mom.

I am a broken mom.

I am often a sleep deprived mom.

I am a grouchy mom.

I am a mom who battles against weight gain.

I am a mom who struggles to find balance.

I am a mom who snaps and yes, sometimes even yells. (I might even slam a door or two.)

I am a mom who grows impatient, feels insufficient and sometimes just wants to stay in bed.

I am a mom who has placed value in how well her kids are doing.

I am a mom who sometimes worries about what others are thinking as I parent in public. (And sometimes, I truly do not care.)

But… more importantly…

I am their mom. Titus and Ely’s.

 

 

I am a patient mom.

I am a caring mom.

I stretch myself to places I didn’t know I could go to be their mom.

I am an advocating mom.

I am a dedicated mom.

I am a mom who’s heart is torn apart and put back together in new ways as a result of being a mom… and it’s beautiful.

I labored for hours (and in Titus’s case – days) to be their mom, and that labor hasn’t stopped. It has just changed so I changed with it to be their mom.

I am the mom who kisses boo boos and apologizes when she gets angry.

I am a mom who searches for adventures for her boys to experience.

I am a mom who held her son through to his last breath and had the holy honor of ushering his spirit into the arms of Jesus.

I am a mom.

Moms,

We are patient, we are impatient. We are loving, we lash out in anger. We are teachers, advocates, coaches, therapists, fighters, and mediators for our children. We also are the first in line to show our kids how to screw up and treat others wrongly. And in turn, the first to show our children how apologies, forgiveness and grace operate in a broken world.

What a horrifying, painful, beautiful and fulfilling role to be placed in… mom.

It’s different for me this year, as Titus’s transition to Heaven as left a big hole in my role as mom. But as with everything in life these days, my heart approaches mothers day with grief and hope holding hands. My pain is held within God’s promise… a promise to redeem. 

To redeem not just my son’s disease, death and our separation as a result, but to redeem all the ugly parts of me, the places where I’ve failed as mom, wife, daughter and friend. And because of His promise, I enter my day knowing we experience redemption right here, right now. Otherwise, I wouldn’t be able to do this… write and tell our story. It’s a link in my redemption story.

So yes, I am a mom. So are many of you… maybe even in ways that don’t look “traditional”. You are still a mom. But even more importantly, you are a redeemed and loved daughter of our God –  a king who will one day make everything complete and right. In the meantime, He wraps us up in hope and joy filled blankets as we hold pain and grief, failure and loss in our hearts… because we are moms.

And you, my dear friend, are a beautiful mom.

Thanks for listening,

Bekah

No time like the present

I walked into my living room after laying Ely down for nap and it was a disaster. My couch was all torn apart, pillows on the floor, everything in every toy basket seemed to be emptied all over, bringing the risk factor of navigating my living room to somewhere between high danger and impending doom zones. Blankets were slimy, wet and smelly and a stench of “poop” hung in the air.

Normally, I huff, take a breath and begin the clean up process knowing that in an hour or two when the little guy gets up from his nap, this is going on repeat. I know, I know… I should ask my son to help with the clean-up. I mean, I do…. Sometimes. It’s just not his gift. Titus, my oldest, now he could clean! That kid would clean up after me! And if I put something in the wrong place, he’d correct it. It didn’t take much to convince him to clean up. Ely, well… his gifting is to destroy things in Guinness Book of World Record fashion. Don’t get me wrong. I still try to instill these housekeeping values in him and encourage him to help mommy “ea up” as he says it. But there are days that takes more energy than the actual clean-up process itself. So today, I walked into this catastrophe lone soldier style. I took a look around to survey the damage and assess how long this would take. Those “nap minutes” are precious to me.

In my pause to look, I felt something well up inside me. Was that really what I think it was? Yep, thankfulness. Maybe it was because just a few hours ago, I was reminded yet again how little we are really guaranteed in this life and how dependent I’ve become on the hope and grace of Christ to be my enough. A text had come through on my phone from my dear friend who has begun the end of life stage with her sweet 6-year-old son, navigating painful, horrible and precious moments. I was rocked back on my heels of emotions as I replayed that very stage I just walked through with my 6-year-old son Titus, just a short 6 months ago. The disease ripping her son from her arms and requiring a far too early goodbye wreaked havoc in my household as well and we are learning to live in this place of pain and missing, yet holding on to the hope of redemption, wholeness and the promise to see him again someday soon.

“How long, Lord?” I asked out loud staring at the mess. “How long do I get to clean this up day after day?” I miss so much the mess Titus used to make. Yes, he helped clean up so that made it nicer, but really…. The dinosaurs meeting up with the trains on our ottoman, the cars lined up neatly in a row all facing the same direction ready to play out whatever imaginary adventure he had prepared in his mind. Duplos… everywhere. The bowl of cereal there to snack on that wound up getting crushed into the rug more often than not (oh wait… that still happens). Those moments with Titus are now just a memory and gosh, I miss them. So, I stared at the couch cushions resting haphazardly on the floor, the blanket that had been sucked on leaving sopping wet corners to hang. The stuffed animals sprawled everywhere, the dinosaurs hiding beneath the blankets, waiting for me to step on one of their spikes, and the other odds and ends that seemed so random. I’m not sure they even had a purpose for being out except as collateral damage in the 3-year old’s wake.

I stood up on the aforementioned ottoman and snapped a couple pictures. Yes, I want to remember this. My 3-year-old, Ely, isn’t guaranteed a long life either. I mean, who is really, but most of us expect it. But Ely is plagued with the same fatal disease that took his big brother at the age of 6 years old. And I know I’m given a gift because I can’t afford to take my days for granted; to huff and puff about cleaning up toys and messes. I embrace it because it is my son’s presence. He’s living and breathing here in my life right now and I don’t want to miss that. I would never wish this pain on any other mama. Ever. But I do hope and pray that my story helps others see the gifts in their lives that are wrapped up as inconveniences, frustrations, and unexpected stops. I don’t want to give anyone a guilt trip. I want to provide an avenue for a perspective shift. I almost sit down among the mess and let it be. But I don’t. I clean it up and every breath breathed holds a prayer for both my boys, for my husband, for me, for my friend. Such fragility, this life and yet, so vibrant that I can feel His spirit moving in me allowing me to glimpse His kingdom in the midst of such mundane things. Joy carries my soul, hope lifts it, and grace allows me to embrace. May we all be stirred in such places as our living room, among stinky, slimy blankets and sharp weapons disguised as children’s toys.

Thanks for listening…

Bekah

The escape plan

I was sitting at a red light so I quickly clicked on my notifications to see what I might be missing or need to know. Out of the corner of my eye I noticed the light turn green so I took my foot off the brake to slowly roll forward while I clicked my phone off and put it away. After all, I don’t text and drive, don’t ya know. Only when I’m at a red light. “Whoooop Whooop” rang in my ear, a quick blip of a siren. I looked in my rear-view mirror and realized to my dismay, it was intended for me. I sighed and my shoulders slumped as I pressed on the gas, turned through the light and pulled over noting the time. Yep, my son will be late to school today. And then began the pleasant conversation one has with a cop after being pulled over. You know, the one where he asks what business you had on your phone that you needed to do it while behind the wheel of a vehicle in drive. Ugh. Nothing important and it was just plain stupid. And I pulled away with an extra piece of paper when we were done. No tears spilled, although they were close, but my ego took a big hit. All day I’ve been contemplating this experience that started off this fine, sunny, beautiful Thursday. I dropped Ely off at school, jumped back in the car (feeling a bit grouchy about it all) and drove home. I pull up to a red light. I sit there for a moment. Geez, it’s quiet. Automatically my hand reaches for my phone! Like it seriously did it all by itself! I caught myself just before turning it on and threw it back in my bag. What the heck, Bekah?!

I had to drive that same exact trek 6 times today. Once to school and back for drop off. Then to school and back for pick up. Then to Ely’s occupational therapy and back (which is just down the road from his school). You’d better believe my phone stayed put inside my purse, but my mind went crazy. I made a couple phone calls on one of the trips (using hands free bluetooth of course!), the others I would turn on the radio. And I started to worry about my inability to sit in the quiet. The quiet can be a little bit scary for me. The undistracted can be an emotional abyss that looks dark and looming. So I look for an escape plan. One that takes me someplace artificial so I don’t have to deal in the real and vulnerable. And it’s become a bit obsessive. It doesn’t always look like Facebook, texts or phone calls. It could be a fictional book. Or food. Or TV. We all have our list.

In all my driving today, on my final trip home, it hit me. I’ve been looking for an escape plan through all this because my mind is pleading for a break. It’s begging to run from pain. My nervous system is operating at maximum sensitivity levels and it doesn’t take much to push me over the edge. This is my daily struggle. The one where I’ve become really good at pushing back the emotions because they might make me or someone else uncomfortable. Choosing the superficial and surface escape route is much easier. Oh how I grow tired of it. Even when I’m caught up in the act of distraction, my heart grows weary of it and yet I don’t stop. What might be on the other side if I do?

It’s the season of lent. The season where we pull back, we sacrifice, we take away, we re-evaluate, we pray more, we become aware of ourselves and our need for God. We stop turning to our own escape plans and turn our full attention and focus on THE escape plan. The one where God sent his son Jesus to this earth to sacrifice his life in order to save ours. That escape plan.

So what will I find on the other side of distraction and faulty escape plans?

I will find a God who heals. And, yes, while I believe God can heal physically, well, the truth is, that hasn’t been my personal experience. I’ve watched so much death happen. Even right here in my living room. But I have to be a person who is willing to remember! Remember how He has carried and continues to carry me through. To remember the fullness of life experienced right smack in the middle of the most broken of times. To allow the healing work he is doing in me to sink into my soul and be a healing balm to my wounds… ones that I will carry with me for the rest of my life.

My eyes tear up when I see another family with needs like our own. And that distraction tugs. The uncomfortable sensor goes off like a siren! But I want to say, so what? That reaction is God’s heart in me. Let it be.

I feel the jerk of my heart beating like it’s reminding me how very alive I am and how gone from this earth my son is. There is that sensor! Distract! Distract! But I want to say, so what? That is a momma’s heart, each heartbeat is a heart-bleed because I loved and still love big. But instead of clotting off that heart-bleed with distraction, I must let it run. For it is his blood that first ran to give us freedom in His love and grace. It is his broken body that made us whole. And it is my broken heart, bleeding all red and love that is finding healing.

My healing doesn’t look pretty. You should hear me in my therapy sessions when I start crying. I choke things out, sometimes my breath comes into my lungs super constricted and wheezy. But I am reminded that in Jesus’s most broken state, all things were made new and He was beautiful. He did not distract from His mission. A mission to rescue his most dearly beloved… you and me.

So…

I’m going to put down the phone, yes even at red lights. I’m going to get comfortable with silence. I’m going to cry when I feel like crying. I’m going to hug someone when I feel like they need it. I’m going to walk into brokenness knowing I’ll want to run. And I’ll run to Him.  And I know I’ll be able to do it because it is HIS strength in me, reminding me that all is not lost or broken. And in fact, redemption is here and it is for all. Because that was His ultimate escape plan for us. 

Thanks for listening…

Bekah

The lost factor

 

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My beloved Titus,

I hope you are well. I miss you. And thats not a light-hearted sentiment… thats a soul-stirring, gut wrenching “miss”. Nothing feels like its in place now. You have gone away and now a big piece of me has too. I’m making it through the days, but many with tears just beneath the surface. So much of me is feeling incomplete, uneasy, always alert… like I’m in search of something thats missing because of the nagging feeling that I’ve lost something. Or someone. And I have… I lost you.

I know, I know… not entirely. Your memory, your joy, your eternal life… those things are not lost. They are alive and well. I’ve had glimpses of you through others. One person shared she had a vision of you playing with a lion, skipping across rocks in a river. You were having so much fun! You made your way back to your home where a feast was waiting for you and Jesus was your dinner guest. Hearing this from someone else made me so emotional. I took peace in it but it was also weird. And so unnatural to not be a part of your life now. To not know what you are up to. To not get the daily report from your teacher or brief paragraph of the day from your nurse. To not be by your side every moment, close enough to take care of every need as it comes up. To not be able to take in your laughter, your smiles, your bundle of energy. That was all so much a part of me, Titus. And its all still so ingrained in me, but you are inaccessible. This incompleteness in me makes me incredibly aware of my brokenness and as a result, so aware of the brokenness around me. It’s heavy. There is too much hate in this world, too much death, too much pain and sickness. And none of it is okay in my heart. All of it needs to be reconciled, but it feels too deep. Lets just be as honest as it gets… I am lost. I feel like a soldier returning home from war attempting to make sense of civilian life under a new me. So I stand here wondering whats next then?  If I, if we, must live in this pit of brokenness, what is next for me, for your dad, for your brother in that pit?

Titus, you made me smile so much. I still look at your photos all over our home and see old videos of you and I laugh and smile, feeling so much pride and joy! You are my son! And then it hits me that I can’t turn around and see you standing or sitting behind me. And honestly son, that still takes me aback. Because I truly can’t believe that soul of yours, that crazy ball of energy, was snuffed out of life here on this Earth. It doesn’t seem possible.  I left the house this morning because it was too quiet. Inside me the jagged edges of my heart were screaming for attention. I found myself beside a quiet bubbling stream, having a cup of coffee and writing this letter to you. It’s not very eloquent, but it’s all that is screaming inside coming out. It’s my honest search for the re-building I hope and pray God will do in me as I stand lost and broken, knowing and trusting that in this pain lies His power and love and grace.

I’ll end with this… a glimpse into the amazing memorial service held for you, son, just a few short weeks ago. These are the words God gave me to share in your service. I love you, son… And I’m so proud to be your mama.

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My baby has been gone for nearly six weeks now. I still hurt so bad. I miss him and have never felt so unable to fix and heal. My arms were meant to hold him, comfort him, love him and now they are empty. And the ache is worse than anything I’ve ever felt. I don’t understand why. There is so much conflict in my soul.

The relief that Titus doesn’t have to battle anymore.

The agony to not be able to hold him again.

The joy when I picture his huge smile and hear his infectious laugh up in heaven.

The gaping wound in my heart that will be open for the rest of my time here on earth.

The anger that my child had to even fight such a battle in the first place and had to face death at 6 years old.

The gratitude I have and pride I feel to have been his mom all of these 6 years.

“Dance with Jesus, my sweet boy…” those were my last words to him before they took him away.
I’m jealous. I would’ve loved to be right there with him, to see him transform whole again. To watch his ushering into eternity. When I think about Titus departing this world and starting life in Heaven, I don’t imagine my son waking up in front of a pearly gate with chubby baby angels flitting around. For some reason, I always imagine a huge train, operated by a Tyrannosaurus Rex engineer, pulling up beside him. The train is full, my gramps, my grandma, perhaps other kids who fought a similar fight, all on board to welcome Titus. And as the train stops in front of Titus, the train conductor steps out. His eyes, his voice, everything about this man is familiar to my son because he has been with Titus through his valiant fight here on earth. And before the words “all aboard!” can slip past Jesus’s lips, Titus runs (yes, runs!) headlong into Jesus’s arms. Jesus even perhaps cries happy tears as he sees my son restored to wholeness again- exactly as he was meant to be. Titus’s face mirrors Jesus’s own joy, his smile taking over his face, eyes sparkling alive and blue with a patch of brown on the left side. And just before he flings himself into Jesus’s arms, Titus does a celebratory somersault, effortlessly rolls back up to his feet and jumps into the arms of Jesus. Titus and Jesus jump onto the train where big Titus-sized hugs are given out to the community of love surrounding him. The t-rex takes them on a wild train ride, one that might resemble Roger Rabbit’s ride in Toon Town and Titus’s reaction being similar to what it was in that ride, clapping, stomping his feet and cheering at the top of his lungs with a vibrant smile on his face.

I have learned so much through my son. A few years ago, I decided to start writing a letter to my boys. I thought I’d add on to it as the years went by and when they graduated, they would have a letter of Gods story at work through them. I thought these letters would be for my boys… little did I know that through the letters I wrote to Titus, God would remind me of his redemption of all things broken.

In one letter, long before Batten entered our lives, I told Titus, “life hasn’t been easy for you. But even through your struggles you demonstrate pure joy! I keep using that word to describe you because I can’t explain my little Titus any other way. You are joyful! Titus, I want you to remember this… the joy you demonstrate daily to us, is God in you. We don’t have this joy out of nothingness. It comes from God and he is so good to give us this gift through the good and the bad.”

My next entry came after Titus started having seizures. We did not know what we were dealing with yet but we knew his road was difficult. I shared, “I want you to know, son, that even in the midst of your trials, you don’t have to wait until you feel better or things are all going normal to shine or succeed. You’ve already proven to us that perseverance is totally worth it and we can’t stop living life just because different issues come up. God is using your story to teach others about strength in HIM and to open my eyes to the brokenness around us.”

The final entry I wrote to him followed our move from Illinois to California. It was a huge transition getting all things medical, work, school, etc… re-established. But once again, God was so faithful and I needed Titus to know how much he was loved. “Titus, you are SEEN by God! He loves you. You have never been lost on him. We are nearing our 1 year anniversary of your first seizure and I am in awe of the way we have been carried through this time by God. God has created you to be amazing Titus and he will always be faithful to carry you through.” I was in awe then at the tribe that rose up around us and I continue to be in awe.

The countless ways we’ve been loved by God through all of you and thousands of others…. It’s so humbling because… well, really, who are we to receive such unconditional love? And it makes me wonder, why? Why are so many people joining us in this story? One of such pain and heartbreak?
God has shown me that Titus’s story is about so much more than a little boy fighting a Batten disease battle. It’s about all of you, too. Being invited into Titus’s story invites us into something so much bigger than ourselves. It’s being invited into brokenness. And, oddly, everyone craves that. Because that’s where we can be real. When we are willing to recognize that we are ALL broken, walls are torn down and the real work begins. This is the common ground on which all of humanity can meet. Brokenness under the shadow of Gods gracious wing can be life-changing, transformational. Healing.

Healed…. That’s what my little boy is today. And so, as his mom, I’m not going to get stuck on the why question, but rather I’m going to ask “what next?” God gave me the gift of being mom to an amazing little boy and he will be a part of our lives as much in the future as he was in our past.

Thank you, Lord, for this gift. Let us run toward this heartache and pain opening it up for you to breathe into as we watch you redeem. Turn mourning into dancing, ugly into beauty, and allow us to carry on the legacy Titus left behind of strength, perseverance, love and joy only found in you.”

Thanks for listening,

Bekah