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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From the broken

As I read a bedtime story to my son tonight, I couldn’t keep back the tears. “Mama, what if I a were a slimy smelly sea creature with seaweed hanging from my body?” asks the boy in the book. And his mama assures him she would love him for exactly who he was, slimy, smelly seaweed and all. “I love you, my wonderful child,” she says.

A couple months ago I was thinking about love. How do we use love to help those around us truly fly, to be a part of God’s story the way He intends? As I was spending time just listening, God spoke this into my heart. “Love is… NOT holding someone to the impossible (and quite fake) standard of perfection that the world holds them to, while simultaneously championing them to be the very best version of themselves. In this you give that individual a chance to live authentically in who I (God) have created them to be.” I’ll be honest, at first I thought he was directing this to my heart because of how I needed to respond differently to my husband. And truthfully, I did need to hear it for that purpose but over the last few weeks and frankly, the last few days, this has taken on a whole new meaning for me and I believe God gave this to me so I could hold on to it now when I’ve felt the most broken than I’ve ever felt before.

A year ago I remember thinking I would surely break… snap at any moment. Danny and I were living in high alert mode as our son Titus had begun having seizures and wasn’t responding well to medication. Our youngest, Ely began having what the medical world called “ALTE’s”, apparent life threatening episodes. Ely would have such a forceful spit up that it would clog his nose and throat leaving him unable to breath or clear out on his own. Danny and I, countless times, suctioned him out, adrenaline pumping, working as fast as we could to save him from aspiration and ultimately, our worst fear… him dying.

Leading up to this most recent week, as we’ve faced health challenge after heath challenge, there was always something we could do to help our children. Ely had a 2 and 1/2 hour stomach surgery and has not had another dangerous episode again since. He was failure to thrive and had a feeding tube put in. He’s now gaining and actually finding himself the on the growth chart. We’ve faithfully given Titus every medication the drs prescribed to successfully control his asthma and allergies and have diligently searched for answers to his seizures and what we could do, radical or traditional, to help him. We sought out every therapy and assessment we were told or felt he needed and diligently got him on an IEP, all with promises that this was just a difficult season and we would see improvement with time.

Our search for answers ended this week, Tuesday at 11:45 am to be exact. And we are left with the ability to do only one thing… Love. Titus was diagnosed with a rare genetic disease called late infantile NCL. It is progressive and fatal with no cure. This disease will take our sweet boy away before he can experience being a teenager.
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There isn’t anything we can do to reverse the bad genes, to heal him. Appointment after appointment this week confirmed the diagnosis. And I’m left feeling desperate, helpless, sad… so so sad. And I find myself saying to Titus over and over again, “I love you.”

And God has been speaking to me in my deep brokenness of an even deeper love. A love that enables Titus to be all that he was meant to be despite the obvious imperfections we see in this world. And I want to champion that. I want to love my son like that.

This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it.

But… out of the broken comes love. An authentic, new eye-opening kind of love.

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His big smile lights up a room…

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The three most precious gifts God has given me…

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Our silly clown who adores his big brother…

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Gramma loving on these two…

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Making silly faces at each other and sharing laughter that comes from deep within…

Oh how I love and am loved.

Thanks for listening… And keep praying.

Bekah

Just today

My head is being held up in between my hands. I feel so deeply that I’m starting to go numb and can’t feel anymore…

I crumble to the floor in the bathroom, sobbing, pleading for my boy back…

I scream at God, cursing him, throwing a temper tantrum that resembled my teenage years…

I just can’t. Not anymore. No more strength. No more.

I know the title of my blog is “Can’t steal my Joy”, but that doesn’t mean it doesn’t happen. This blog is just my war cry to show that I won’t lose like that. But this week, my joy was stolen. I wasn’t sure how to get it back either. I cried into my husband’s arms and expressed my frustration at the fact that hope was gone. It’s been a rough week. A really rough week.

Titus continued to seize so much these past few days that he just hasn’t functioned. He attempts, and we still see a smile here and there, but he struggles too. I’m sad at how he needs to go lay down throughout the day because he is so exhausted from the seizures. I’m sad at how he has a hard time walking on his own or eating on his own. I’m sad at how his big, gorgeous eyes are only ever half opened anymore. Every night when he would lay down to sleep, my stomach was in knots afraid of what we may encounter that night or the next day.

And then my mind would keep going. I’d think about what we would encounter if he was hospitalized. I told God I didn’t have strength for a hospitalization right now. I’d think about the therapies needing to get started to help him and I told God I didn’t have strength for more therapy sessions and doctors appointments right now. I’d think about his future and his inability to be independent that may carry into his adult years and I told God I don’t have the strength for that right now.

No, you don’t… he said.

I start to cry… again. How can I write about joy and hope and heart change when I feel this way? And in my desperation God speaks to my heart, like he always does, meeting me in my despair.

Daughter, all you need strength for right now is to lay your head down on that pillow and go. to. sleep.

I breathe. Just today. I only need strength for today. I only need strength for right now. And He has given me that.

“Give your entire attention to what God is doing right now, and don’t get worked up about what  may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” Matt. 6:34 (The Message)

Wanna guess what happened next?

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Titus was admitted into the hospital for an estimated 10 day stay. I’ve grown to hate these stays. But when the neurologist came in to our clinic visit and said he felt it best to send Titus right over to the hospital, something happened inside me. I felt strong. We could do this, Danny and I. God was giving us enough for just today. Because that’s all we needed. Just today…

Thanks for listening…

Bekah

Remember…

“He had 43 seizures at school today.” Titus’s teacher said these words to me just over an hour ago. I hate those moments. They are the ones where I am not surprised at all, yet shocked at the same time. They are moments that fill up quickly with fear, sadness, frustration, doubt. Counting the ones I’ve seen today, we are easily crossing the 100 seizure count line before the night comes. And a word keeps echoing in my mind…. remember.

About a week and a half ago I was sitting in a staff meeting when our lead pastor, Jeff, asked us a couple questions.

1. When has your joy been stolen? and 2. We need to remember what God has done. What has God done in your life?

When he asked those questions, inside, I was actually angry. Because I could remember. I could remember A LOT of ways God has shown up in our lives. And the passage Jeff had brought to us that day was about a dad begging for his son who had convulsions and foaming at the mouth to be healed. And Jesus healed him. There is obviously so much more to the passage of scripture, but all I could see was Titus and what he looked like when he had those kinds of seizures and the fact that he is not healed. The fact was, I was sitting in that staff meeting with my joy stolen from me and I couldn’t figure out how to share what God had done. But, I am ready now, because this is one of the ways in which I continue to find hope and heart change… through remembering.

So, I’d love to pick up in a part of our story about our mischievous little boy, Ely and I’d like to remember with all of you.

7/6/2013:

I’ll spare details here as the story of remembering begins when I am in labor and about to deliver Ely. The Dr tells me to push, so I do. I’m so ready to see my son, it’s been a loooong night and day. But what I see is not my son, but complete shock across my doctor’s face and then something inside me snapped. It all happened so fast, I had no idea what was going on, until I hear this, “Oh my gosh, the cord was really tight around his neck. Your cord snapped away from your placenta allowing him to be delivered, I’ve never ever seen that happen.” He was quickly rushed over to receive oxygen. Danny paced, I cried, the Dr kept mumbling “I’ve never seen that happen, I’ve never seen that happen”… we waited for words of comfort that our son was going to be okay. We didn’t get any. We heard no cries. It was painfully heartbreaking. Finally, I hear my son’s voice and the nurse looks at me, smiles and says, he’s going to be okay, mom. I cried even harder. I couldn’t process it in the moment, but I believe God cut the cord. I truly do. He protected my son and brought us such joy through Ely in the process.

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12/24/13:

We are headed up to Comer’s Children’s Hospital in Chicago with Ely. It’s been a really tough road for him thus far and he is slated for surgery due to malrotation of the intestines, which was discovered on an upper GI test performed just a couple weeks before. I’d never heard of it before, but quickly learned this was non-reversible, completely fixable, yet very dangerous if it wasn’t identified and fixed. Leading up to that day, Ely had started throwing up green color, not pooping (sorry I can’t talk about a baby without throwing this stuff in here!), and had many of the signs that this had gotten very bad. As we were sitting in the waiting room for the medical team to take one last look at his intestines before sending us to the surgeon, he had the BIGGEST blow out diaper I have ever seen. Right there in the waiting room. Awesome. So inconvenient… but wait, he POOPED! That was a big deal! We head in to the room where they run a second upper GI. The doctor comes in to report their findings, “We see significant reflux, but no malrotation of the intestines. Surgery is not necessary at this time!” My first reaction was that the first doctor got the test wrong. But then our pediatrician tells us, at a follow up visit, that she saw both tests and there was malrotation and then there wasn’t! And that she has never, in her 20 plus years of practicing, seen malrotation reverse like that. She kept calling Ely her miracle baby. So that is what he has become… our miracle baby. We got to go home and be with family for Christmas and thank God for the way in which he showed up in this circumstance.

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There is more to Ely’s story. But I’m going to stop here for now because I want to say this… lest you think the only way God can show up big is through these kind of unexplained physical events, I have more.

I remember God showing up through my boss who cut our grass when my husband was gone for a week and I had two sick boys to take care of.

I remember God showing up through the family who stopped by to give hugs and enough money to pay for the insane parking fees in Chicago at our next specialist visit.

I remember God showing up through my second moms who made us dinner, loved on and sang to our boys, supported us through prayer, helped me put the boys to bed at night when Danny was out of town.

I remember God showing up through my MOPS group, both past and current, who let me talk, cry, and laugh through it all and invited me in to their stories.

I remember God showing up through the man who I had never met who faithfully cleared our driveway of feet of snow when it was just me and the boys and there was no way for me to get out there to do it.

I remember God showing up through friendships that quickly became family in a place that shouldn’t have felt so much like home, but it did.

I remember… and that is why I have hope. So when your joy is threatening to be stolen, remember.

Thanks for listening…

Bekah

Its all about the heart change

This is my very first post in the “blogdom”. I’m uncertain of how this will all go and what kind of journey this will be, but I am learning so much and I’ve gotta share. I’ve had this profound revelation sinking its teeth in to my mind, it comes up in conversations with others and its changing me. I almost feel like writing about this in my first post is giving you the end of the book before you’ve had a chance to fall in love with the characters, laugh and cry with them, and waste enormous amounts of time because you have literally become a part of the story and you cannot put it down. But thats when God reminds me that there is more… there’s more to this story, His story. And while what I’m learning now feels like a culmination to an end, it’s not. So here we go…

The last two years of my life have been the hardest two years of my life. I mean, high school girl drama was pretty painful, but it was a cake walk compared to what we are experiencing now. A little background on my family…

My hubby and I have two BEAUTIFUL boys: Titus, who is 4, and Ely, who is 20 months. Titus is inquisitive, sweet, very caring, joyful, adventurous and trusting. Ely is mischievous, silly, nosy, loving, quirky and quite amusing. These are my boys and I need you to know them defined by these things before they are defined by anything else. They are loved. By many. They display these characteristics in the face of great odds, more junk than I’ve ever had to face.

For now I’ll share about my Titus…

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On February 10, 2014, we got a phone call that Titus had a seizure at school and had been taken to the hospital. That began a year long journey to now of searching for answers as the seizures grew and increased. To date, he has several a day (sometimes 100 or more) and wears a helmet to protect his head.

For a while, I viewed this journey with Titus as a “faith exercise” where God wanted to see if and for how long we could stand strong and “keep the faith”. It didn’t take long for me to crumble under the weight of this idea as there was no way I could keep standing strong. It was in that moment that God taught me something. Strength is not a feeling. It is a choice. Please understand, I do not wake up each day and say “today, I choose strength!” My strength isn’t sourced in and of itself. No, I don’t choose strength, I choose hope! Because that is where my strength comes from… hope that is found in my Lord! Hope has since become my lifeline, the banner I wave. But what I have learned recently feels more profound.

We’ve clung to this hope that someday, all those seizures and delays will just go away. We’ve had people praying for Titus’s miraculous healing. And let me be clear… I want desperately for my son to be healed of this awful disease of epilepsy and the pain it brings him every day. And I fully believe God can heal him. But I no longer beg for that each day. Because God is teaching me that through Titus’s story, our story, he is performing miracles- miracles of heart change. We often think the biggest way God can show up in this situation is by healing Titus physically. But He is teaching me that is not the case. So, I pray for a healing of a different nature… a healing of the heart. For you, for me, for the medical teams we interact with on a regular basis, for our family, for our friends- old and new, for my husband and my boys. I’m terrified of the part God will ask me to play in this. It means living in these hard moments intentionally. And not getting sucked in to the despair and sadness I often feel, while still being vulnerable and real about it. But I can’t think of a better way for God to redeem all this junk we’ve been through than to heal the hearts of many, whatever that may look like.

So with that, I invite you on this journey of heart change.

Thanks for listening…

Bekah