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.
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.
In our frequent travels back and forth between Ohio and California, I’ve run across many new faces. Sometimes we wind up conversing, other times not so much. In the conversations that do start up, it’s pretty much guaranteed that our story will come out. “Where are you all headed?” “Oh, you have family out there?” And so I begin to explain. “Rare, fatal disease. Travel for experimental treatment. Yes, its genetic. Oldest son just died from it.” (You know, it goes something like that, but with a touch of “Bekah” as my husband refers to it.) I can usually see the struggle and quarrel in their minds as they search for what to say next. Those questions are supposed to lead to small talk and I just hijacked the conversation and laid it all bare. As people process what to say, I hear a variety of responses. And I have been so blessed in these conversations, even though the other person often feels inadequate in the words they respond with. Honestly, I’ve been through it and I don’t even have adequate words most of the time.
But one such response that I hear often is, “I just don’t understand why”. And I’ve wrestled with that. Because, well, I know the answer. But it’s a monstrosity to tackle and it’s messy. And there isn’t this easy way out. But really, maybe we’ve got the why question in the wrong context all together. So… I guess I’m going there this time. And, by the way, I’m not going to pretend I’ve got this all figured out or that I have the depth of biblical and theological training to declare myself an expert in this field. So I’m praying God will be speaking through my words as I share vulnerably what I’m learning deep in my soul as I journey through brokenness.
So, a long time ago- okay, in the beginning of this world, God created Adam and Eve. He gave them so many incredible gifts, one of them being free will. God loved them deeply and created them in His image. He wanted them, in turn, to love him deeply and he knew the only way that relationship could be returned authentically would be if Adam and Eve chose to love him back. (Who wants to have to force people to love them in return?) So, he did what any good and loving parent would do and he established boundaries that held Adam and Eve safe in his love. Well, Satan, who had once been in the presence of God, turned against him and infiltrated the beautiful garden where Adam and Eve lived. He used deception to lead them to believe they could be better, do better, achieve better than God was allowing them to be. All they needed to do was eat some fruit from the tree of good and evil and their eyes would be opened. And so they ate. And their eyes were opened and their hearts were shattered. For God had protected them from the evil Satan wished to penetrate into them and what they had been protected from now ruled in their hearts and minds. They felt things they’d never felt before… Shame, brokenness, incompleteness, fear. And so, yes, they could see good and evil like God could, but they lacked one distinct disadvantage… They weren’t God. And so began this complicated world where good and evil battle and brokenness and sickness and pain and sorrow run rampage. And death… Yes, death happens. This world wasn’t supposed to have death. It was created for life! For joy! For pleasure, adventure, for community, for good! Not death.
This. Is. The. Why.
And how can I just settle with that? Be okay with that? And move on? And, not to mention, still love that God? The one who allowed this? When sin entered, death followed in and became certain. It touched my Titus. It touches everyone.
Everyone except one.
But wait… It actually did touch him. And in the most broken of ways. The very thing Satan eagerly planted in our hearts intending for it to grow strangling vines around us to suffocate, to cause our eyes to lose sight of joy and become lifeless grey- moving through the motions without really living, to feel pain and hit after hit from the circumstances around us; this very thing- brokenness- that Satan meant for eternal harm to our souls is the very thing God uses to reach us deep inside and pull us out.
Our God is so good. He didn’t bring this brokenness into the world, but instead of turning away, he became broken to be in our broken to help us find our way back to him even as we are broken. What the devil intended for suffering, God used for healing. He used the cracks in our hearts to breath life into places that would otherwise be barricaded and unreachable to give us the fullest of healing.
And, yes, that one person I’m talking about who was untouchably touched by death is Jesus. The one whom death conquered. Who was broken apart. Whose very life was suffocated out of him. Did he have to go there? No… But, remember, God is love. God loves you. And if you lost your child in a terrible storm, you’d go right through that storm to get them back to safety. And so, God sent Jesus, his son, to earth to rescue us in the middle of our storms of brokenness. And when he came here he brought life and hope and joy and promise and redemption. And then he showed us the great lengths he would go to save us… Yes, to even die. And then, 3 days later, he showed us the even greater lengths he would go to save us. Yes, even conquer death which is brokenness in its very final and depleted state. Even there, he would rescue us. Brokenness, because of his grace, was made into the most powerful tool for heart transformation and for good. Brokenness flooded Jesus’s soul because he wanted us. He loves us. And he was willing to go there for me, for you, for my sweet Titus.
This is why. This is why sickness and death happened to my son. But this is also why I’m not afraid to go there… To broken places and to live broken.
Just some of the blessings in the broken
When we hurt, the deepest need we have is for someone to be there for us. When Titus took his last breath here and in turn got to run to the arms of Jesus, we were left on this side ripped to shreds. We called our friends, Steve and Cathi, to come be with our family. Steve and Cathi ran into our brokenness. They held us and sobbed with us. They recognized the pain and let their hearts break too. They weren’t afraid to be cut by the razors that had just mutilated our hearts and they willingly stood with us and felt it all. This was love. This was the spirit of our God with us – feeling our brokenness. And in that moment, we had good brokenness. The kind that gave abundance. Gave joy. A deep, love filled brokenness. Look at Jesus’s scars. Reflect on the cross that was carried and died on for you. And the scars on his body remained even after death was conquered and he was raised back to life. Why? Because he wanted you to know there is a great gift in brokenness and that is him and his deep abiding love for you. For you. That is really the why… Why I will run full on into my broken where I know I will indeed break free.
As we navigate the confusing messiness of grief during the holiday season, I found myself looking back through my journal at this time last year… Christmas 2015. As we were gearing up for the Christmas season, I remember Danny and I saying to each other that we both felt it was going to be Titus’s last Christmas. Of course, I questioned my gut instinct and wondered if I was just being dramatic. After all, many kids with CLN2 live to 8, 9, even 12. Titus was only 5. That year I was so very aware and eager to make everything perfect. The complicated thing about holdays and family is that things rarely go “perfect”. But it became a Christmas to always remember. I want to take you back to December 24th and my journal entry that day. I was going to post it last year, but there are times I just freeze and cannot share my heart. But today, I can and will.
December 24, 2015 journal entry:
Each time Christmas comes around I hope I go through it slow enough to have what I call, Christmas moments. Some years I feel successful at this, other years I’m drowning in the schedule. This year has been crazy and I’m tempted to create these moments just so I don’t feel guilty about missing Christmas. However, one such moment snuck up on me last Sunday and it is not one I could’ve planned or scheduled. (And aren’t those the most real, anyway?) It was a moment I needed to allow into my heart to sink in and flood my soul. It caught me off guard. I was sitting in church and our worship leader begins playing a song I’d never heard before. The words told of the birth of Jesus. I let myself seriously consider exactly how this all played out.
A virgin got pregnant and still remained a virgin. Wow!
Jesus, our Lord, came in such a humble and vulnerable state as a baby boy and his first bed was a manger. Wow!
Mary raised “God with us” and didn’t screw him up! Wow!
Jesus walked on water, healed incurable diseases, loved EVERYONE. Wow!
He took on the most brutal death, a very final deed to release the foothold evil had on this world to unleash even greater powers- Grace and hope and love! Wow! It’s all such a glorious impossible!
And as I listened to this song being played, tears flowed down over my cheeks. At first I was embarrassed. I cry way to easily at things sometimes. And then I felt Him nudge me. “Sit in this.” He echoed in my heart. “I am meeting you here. I am flooding your heart with enough… with glorious impossible.”
There is a lot of impossible going on in our lives right now. Simultaneously, there are a bunch of Christmas moments too. Many volunteered to make these moments happen this Christmas for our family in a BIG way. One church in Illinois purchased plane tickets for family members who couldn’t afford to get here so they could get here! Another generous donor from Illinois sent enough funds for us to make accomodations for our entire family! And a wonderful, new friend helped us land incredibly close accomodations to us (ya know, like 4 doors down). Our California church family stepped in the gap in a big way and provided food for all of us while everyone was here celebrating. A family whom I’d never met beforehand came by to love on our family through the gift of 2 Disneyland tickets. Just a few days later our church family surprised us, yet again, with annual passes to Disney, allowing us to use the 2 extra tickets to treat Gramma Cindy and Grandpa Eddie to an experience with the boys there. Our boys’ rehab team decided to put together a “southern california christmas” to remember and treated our whole family to a duffy boat tour of the harbor, all lit up beautifully, and with delicious food to boot.
The Murphy side
The Bowman side
Duffy boat fun
Duffy boat fun
The desire in my heart to have everyone here for Christmas had looked quite bleak and, well, impossible! Nothing is as life changing as what happened in Bethlehem all those thousands of years ago, but this year we truly have experienced the glorious impossible through the generosity and love of so many others!
But still the heaviest thing on my heart is the disease my boys fight against on a daily basis. The insane amount of pressure, guilt, and fear that can take over in a finger snap without warning… and I have to talk it back into its little corner. The timeline on a drug that looks to be truly helpful to our boys but is unavailable at this time as it begins the long journey through FDA approval. It’s an impossible situation. Desperately impossible. For me. And in that moment, sitting in that chair in the sanctuary on that gifted-to-me Sunday, I was reminded – No, not desperate impossible… Glorious impossible.
-End journal entry
Here I am, again facing the holidays with a whole bunch of desperate impossible. At least, that’s what many would think, and often how I feel. The 17th of this month marked 3 months since the last time I held my oldest baby, my 6 year old. That miracle Christmas I journaled about really was his last Christmas. I consider it a gift that God gave us the hunch. And as I watched death swallow him up on this earth in one final breath the night of September 17th at 10:52 pm, I felt the glorious impossible that was the confident hope that our Lord already conquered death and Titus could now fully live the way He was always intended to.
We also find ourselves now 7 treatments in to that treatment I referred to in my journal entry last year. It is still moving through FDA approval, but Ely was graciously granted access to an early access program. The Ride for Ely campaign made it possible to accept the offer for his spot and not have the travel expenses swallow us whole. Glorious impossible.
Now we take on a new chapter. The one where we balance grief, pain, hope, reality… it’s not easy. We have seen first hand in our story and so many others that life doesn’t always end easy. We don’t always land on our feet, but rather curled up in a ball crying out, again, that we simply can’t do this. It’s all a desperate impossible.
And don’t we all have those? Those desperate impossibles? We are a broken people. But my prayer is that as you experience Christmas this year, it won’t be just about the tradition, the food, the family get togethers, the drama, but rather all about the hope and grace this glorious impossible has to offer you this Christmas.
See the Virgin is delivered In a cold and crowded stall Mirror of the Father’s glory Lies beside her in the straw
He is Mercy’s incarnation Marvel at this miracle! For the Virgin gently holds The Glorious Impossible
Love has come to walk on water Turn the water into wine Touch the leper, bless the children Love both human and divine
Praise the wisdom of the Father Who has spoken through His Son Speaking still, He calls us to The Glorious Impossible
Lord, my brain is mush. I don’t know if it’s a coping skill or if it’s simply just the way it is in grief. I’m kinda numb. I’m here to chase thankfulness because I want to feel something. And, in gratitude, I find hope and joy.
It’s weird… It’s not hitting me that this Thanksgiving is any different than the last one. We had Titus last time though. And the fact is, this time we are missing our party of 4. We are checking in as -1 and I don’t really know how I’m supposed to react to that. I’m not worried about what others want or need to see from me… but I’m not sure what I’m supposed to feel to help my heart grieve… or process… or move forward.
It’s been more than two months since I’ve seen and held my boy. He left us. He actually had the strength and courage to leave us and face death. He held on as long as he could and I’ll always cherish those last days and moments. My heart held so much anguish, love, admiration for him in that final week. And now, my little boy is gone and perhaps what hurts the most is the admitting that here wasn’t the best place for him. That there – with you, Lord – is the best place. I know that. And it aches in my tightened constricted throat. In the quiet tears and nose gone runny. In the muscles flexing in my abdomen to keep the sobs to a minimum… Oh, I don’t know why I hold those back.
I cannot kiss the top of his head to show my love. I cannot sing silly songs and twirl him in an uncoordinated dance. I can’t even seem to dream about him… at all.
But what I can do… what I can summon the constricted throat and hot teary eyes to see and proclaim is thankfulness. One little piece of “Thank you” at a time.
Thank you for our neighbors who surprised us with flowers and cookies.
Thank you for time with friends who give us joy and provide a safe place to just “be”.
Thank you for sweet fruit from our tangerine tree.
Thank you for amazing smiles in the pictures Titus left behind that still ignite a smile in my soul.
Thank you for a husband who has chosen to love me through the ugly parts.
Thank you for the subtle lean of love I receive often from Ely.
Thank you for giving us such an incredible support system who, in this Thanksgiving season, we get to surprise a few with our tradition of Thankful Baskets.
Thank you for football, parades, and chocolate chip pancakes to enjoy with those close to my heart.
Thank you for a man who loves to cook holiday meals!
Thank for an opportunity to treat Ely in hopes his course of Batten will be halted.
Thank you for all our new Ohioan friends who surround us with love and support.
Thank you for redemption.
Thank you for love, compassion, grace.
Thank you for filling our empty buckets so we can pour them out again.
Thank you for power to live through brokenness with the Holy Spirit.
Thank you for holding my son.
Thank you for the way a yellow rose or sunflower gives me a gentle reminder that you love us and are with us through it all. That even when broken- to pour even more out and we will be full. That when we are on our last thread of our broken stem, we still know without a doubt that you are good, Lord.
And you are enough.
And when that day comes that my stem fully breaks, and this earthly body is done, I will be with you, restored to beauty that reflects your glory… no more brokenness in sight. Just like Titus. Thank you for that promise, Lord. The very essence that is the fullest weakness and defeat in death actually becomes the vessel that fills us to the most completeness. Thank you for that kind of love.
We can rejoice, too, when we run into problems and trials; for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5
And here, as I chase thankfulness, I learn to just be. That right now, in this moment, this is ok. To be numb, to feel hurt, to give and be given to… it’s really living. All of it. And so I sit in it and I move in it and I rub my eyes clearer to see in it. This life… it is all a sign of your love. And I feel my soul showered free. Free from expectation. Free from idealism. Free from the need to hide. Here I am Lord… you get all of me. Not just the accolades, the accomplishments, but you get the anger, the cursing of this life that leaves my lips, the spewed words that come out in hate. All of me is all of you and because of that, I know that no matter what, I am enough because you are enough. And for that, I am most thankful.
Yesterday I was in my living room planning a service for my six year old, Titus, who’s life ended here on this earth on Sept. 17th, but began forever in eternity with Jesus. Today, I’m sitting ocean side on a crisp cool morning. My husband is still asleep in the room behind me, Ely at home with family, so Danny and I could get away to celebrate our 11th anniversary. I think back to that day 11 years ago… had we known then what we were in for, I can’t say for certainty those two young twenty-somethings would’ve gone through with it. Quite possibly, both of us would’ve bolted. We would’ve heard all the hard and terrible we’d have to endure and I’m sure we would’ve determined that it just wasn’t meant to be… that God would never hold such brokenness in his plan for us. And, therefore, we must run and find another destiny. A happy destiny.
But there was no such crystal ball, no angel announcing the news through visions in our sleep. So, we followed what our hearts knew and we knew we loved each other. And when I look back, I don’t see a big, giant mistake. I see LOVE. It’s messy, sometimes muddled, sometimes bright and brilliant, but it’s always there. It’s not a flitting rush of love, it’s a deep anchor of love. It’s an anchor that has stood deep and strong under currents of job changes, big moves, having babies, raising young children, losing one of those precious children, and traveling across the country twice a month to attempt saving the other. It’s stood deep under currents of arguments, selfishness, pet peeves, expectations, broken relationships, healed relationships, old friendships, new friendships.
And where did this anchor come from? When we declared our love to each other on that day 11 years ago, our vow was to love each other NO MATTER WHAT. Through it all. And we really meant it too, but the thing about words is that they can lose their potency over time. So we didn’t just vow this to each other. We came to the altar of our Lord and requested His guidance, His strength, His perseverance, His joy, His wisdom, His love to be in us. For always, no matter what.
I’m watching the ocean waters roll and crash in over and over and over again. It feels calming, but in a way, it reminds me of our life. Wave after wave crashing over us with little time to stop and catch our breath before the next one rolls in. But I still can’t see the waves as all bad. There are gifts in them. As they wash over, we come up grateful for the next breath we get to draw. We re-set our perspective and notice things differently. We look from side to side and see others enduring the ride of the wave too. All the sand and gunk that built up on us while sitting in still or retreating waters is washed off as another wave crashes over. It becomes a wake up call, a refresher, an agent of focus on what is really important. There are so many gifts. And as these waves hit us, I’m thankful for the biggest gift of all. His steady anchor of love that holds us together through it all.
God’s anchor will not move and He will always hold on to us. I hope you’ve found His strong anchor too.
Happy Anniversary to my love, the one who clings tightly to the same anchor I do.
Thank you, everyone, for an overwhelming response of love and support for our family. We were blown away by so many aspects of the Ride for Ely journey.
First, Rockey deciding to bike over 1,000 miles just to support Ely… wow. (And then he ACTUALLY DID IT!)
Second, the amount of money raised from people we know, people we have some loose connections to through mutual friends and then from complete strangers. God showed up in His compassionate, loving way through all of you. He confirmed through your actions that He truly means it when He says He will not leave us alone on this journey.
Third, we loved seeing the pictures, videos, and warm welcomes throughout Rockey’s journey.
Finally, the timing of it all is just jaw-dropping. We knew we had a big shot at getting Ely an experimental treatment that could possibly save his life. But the obstacles in the way were going to take us down fast. Just the amount of flying alone was going to rack up the $$ signs. And emotionally, to lose Titus in the midst of all this while being handed hope for Ely… it all seemed just too much to bare. But we watched God work through all of you as each obstacle was taken out. Flights? No problem. A place to stay in Ohio? No problem. Warm hugs when the pain gets too hard or the love is bubbling out? No problem. Prayer partners along the journey? No problem! And as Rockey biked into Darby, MT finishing the Ride For Ely, we were in Columbus, OH where Ely was just coming out of recovery from the surgery he needed to start the treatment. What a God-thing all of this and all of you are to us.
We feel the weight of the generosity… its heavy. We do not take lightly what has been done for our family. Time and time again throughout this Batten journey, you all confirmed with us that you were indeed still there even if life got foggy and we couldn’t even see our hands in front of our faces. You all have been exactly the kind of community Jesus always intended for us all to be. And to be the recipients of such love, such generosity… it is a heavy, heavy blessing. To receive and not be able give back equal value (in man’s eyes), we’ve had to learn the lesson of accepting those gifts even when we did nothing to earn them. And what comes along with that is a deep gratitude, thankfulness. And a very hands on lesson about what Jesus has done for all of us. He gave everything, right down to giving up his life for us even though we did nothing to earn that kind of love, advocacy, and deep relationship with him.
And so, we find ourselves in a place where our hands are open and ready to receive, ready to give. We have been forever changed. We will whisper this truth and love in dark places and will shout it from rooftops. We take a step forward into this new chapter, our hearts broken and shattered but love shining through the destruction and mutilation, creating beauty and strength among the broken. We look to each side and see all of you, also fellow comrades of broken hearts. We all grasp hands because this becomes strength and we take that step together. This strength and love is tangible, palpable. The Holy Spirit is among, and in and intertwined throughout us. The power to transform and change is ours through the Holy Spirit. This is the journey we are on. This is what the Ride for Ely was all about. Thank you. Just… thank you.
To continue to follow our story (and we’d be honored and humbled if you did) find us on facebook @team4titusandely.
We also invite anyone who’d like to attend to join us for Titus’s life celebration on October 28th @ 7 pm at Mariners church MV in Mission Viejo, CA.
With all our love and gratitude,
Danny, Bekah, Titus and Ely
Gut wrenching cries wracked my body. I couldn’t hold it in. “You are dreaming,” I told myself. But it didn’t matter because when I woke up, the dream transferred to a very real reality. A reality that told me this dream, or rather, nightmare, was in my future. The one that looked like a life without Titus. I wanted to stop the deep emotion and sorrowful cries, it really hurt to feel so big. But I couldn’t. It had taken over. Danny leaned over me, calling my name over and over. I felt his arms come around me, holding me, telling me it was ok. This is how I began my day today. A day that holds an anniversary I’d rather forget or pretend doesn’t exist, but with everything in me, I can’t forget. I tried to spend the better part of my morning as if all was normal, but tears were near the surface at all times because truth is, I remember. I remember the anxiety I felt the night before this day last year knowing we’d be marching in to the doctor’s office the next morning to hear the results they had discovered. And I remember the shock, grief, and loss that struck us immediately when we heard the word Batten for the first time on April 7th, 2015 at 11:45 in the morning.
Oh… what a year. My calendar year has been changed. No longer does my year start over in January. No, my year becomes complete on April 7th. On the first day we heard the word Batten. All year, I’ve looked back each day and remembered “a year ago today, Titus (fill in the blank)”. So many milestones gained and then lost. This has been the year of loss. The year Batten took over. Soon my “a year ago” comparisons won’t look so drastically different from the present, the now. It breaks my heart. I marvel at the way it is already April 7! How has this nightmare continued for so long? I should’ve woken up a long time ago to find my boys wrestling in the front room. To hear them singing in joyous chorus together. But that cannot be our life. Oh, how have I survived?
The other night I listened to Danny play a video of Titus. His little voice and dinosaur roar pierced my soul. I smiled on the outside, choosing to remember with fondness. On the inside, my soul was bleeding through the pierced hole, crying with pain. What a gift, this video, but what agony and… will I always have to feel that?
I mean really, guys, how have I survived? And more, thrived?
Is it because I’ve turned into a super hero able to rise above all emotions and circumstances- plowing through each day as necessarily as I must? I think we all know this answer… um, No.
Is it because I must have just been made for this sorta thing? This story, these circumstances? The ones that so many use to deem me “mother of all things they themselves could never survive”? I just naturally fit the role? Yeah…. No.
Is it because I must be in denial and stuffing away my feelings and emotions, refusing to face the truth? Yep, you guessed it… No.
I can explain my survival through one word.
That my superior God looks down at inferior me and chooses me- gives FAVOR to me!
That He allows my heart to open, not close. My eyes to see, not burn. Love to be experienced and felt, not shut out.
That He gifts me laughter, perspective, joy! Not bitterness!
That He holds me in the dark rather than hide from me.
That He allows me to see gifts all around.
In the twinkle of my son’s eye- there it is! A gift!
In the giggle that begins deep in the throat and explodes out, face lifting to the sky (because that’s the proper way to fully laugh with abandon)- there it is! A gift!
In the warm hug that holds me even after I’ve spoken bitter words, tried to drive it away. There it is. A gift.
In the teachers, nurses, and therapists who embrace my boys with love and one-of-a-kind care, giving it all they’ve got. A gift!
In the many Team 4 Titus & Ely events that have popped up over the year. The stories of people changed, loving BIG, allowing God to work through the boys and through others’ generosity. There is is! A gift!
In the calming, centered peace given at my kitchen counter as I sip on a cup of tea and talk to my God. There it is. A gift.
In the encouraging words on cards, scrawled out beautifully, giving us glimpses of authentic love. Yes, a gift.
In the community of love and pledged journeying together – a commitment to do life with us… No matter the cost. There it is. A gift!
In the tender snuggles and endless giggles. Yep, a gift.
The way I can fall apart mentally and still rise brave. A gift.
Yep. There it is. Grace.
It is all a gift of GRACE!
In no way did I, Bekah, do anything majestic or astonishing or particularly breathtaking to deserve acts of such unbelievable grace.
Who does that? Who extends grace like that? We selfish and limited mortals? Do we, on our own, create that kind of power? Of freedom? Of Love?
We could never… not on our own. We are only conveyors of God’s grace. God’s grace centers me, grounds me. And I don’t want to miss it, this gift of grace. I could fool myself into believing the reason I have His favor is because of how much good I must do. That I’ve earned it. But let me tell you, I can’t even begin to live under that pressure. There is no amount of good deeds I could have done to earn what my God has given me in love, grace, mercy, wisdom, perspective. There is no ability for me to make enough good choices and to be nice, kind or giving enough to change the situation we live in. I cannot redeem this junk, this disease. I can’t. I can’t. But my God can. My God lives in an economy of grace!(Thank you Pastor Steve!) He works in an economy that looks like this: You owe, Bekah. It’s your heartbreak, Bekah. It’s your problem, Bekah. But… I’ll pay. I’ll redeem. I’ll hold you. I’ll stand beside you in the raging current. I’ll listen to you whether you praise my name or curse at me. I’ll be there to celebrate with you. I’ll be there to mourn with you. I’ll pay, Bekah. I’ll pay.
For those who might think faith is just a part of my life and that perhaps it falls under the extra curricular or extra credit category, let me challenge you for a moment. It’s not just a piece of my life. It’s not a check mark on my to do list. It’s not a back-burner consideration. It’s everything. His grace is what gives me the ability to smile. It’s what keeps me in check when I say something against my fellow human. It’s what causes me to feel, deeply. It’s what gives me strength to keep getting up each day. It’s what gives me bravery and courage to encounter whatever is dealt out. It’s what brings me back to
This gift of grace is for me. And, it’s for you. And, on this difficult anniversary, where I cling to hope and redemption of all this pain, I pray you also feel the love of a good, good Father who loves you and me. I end with the face of my sweet firstborn and the blessing, or life verse, I pray over him every night.