Just breathe

Ely was down for his nap. Successfully. That’s an important detail. I paced the parameter of the house. Lap completed, I began again. It was aimless. I was looking for my friends, Motivation and Inspiration. Two rounds through the house convinced me they were out and about and I would not find them here. I tried my hand at a fiction read. I made it through three short chapters before I realized there was nothing in me to even give this.

My mind jumped to my options. TV, Facebook, Instagram… Hmm…. Nope.

The house was quiet. Without even thinking about it, I found myself moving to the couch and curling up with Titus and Ely’s favorite Boise State Snuggy. I wasn’t tired, but then again, what would I call it? I had no energy to do anything. The desire and zest for any kind of project was depleted out of me.

It’s been an emotional few weeks for me. I’m not sure the trigger exactly. We have passed Titus’s one-year mark of going to be with Jesus. Around this time last year we were navigating Columbus travels and the clinical trial world with Ely. I know I have lots of reasons to feel deep emotions, but I truly can’t put my finger on what is happening in my heart and soul right in this moment. I laid down, closed my eyes. I lay still. Completely still. Which is impressive for me (ask my husband whom I drive crazy with my constant fidgeting). My eyes opened and fell on the canvas Danny had made for me for my birthday. An incredible gift; a beautiful family picture of Danny, Ely and I after Titus passed away, and photo-shopped in was one of my favorite pictures of Titus just before he had turned 4 years old. He fit perfectly between Danny’s arms and was slightly faded out, showing how close, yet how far he is now.

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How this has become my life, I’m not really sure. It just happened. I wonder at my evolving as a mom. And I feel a bit of a failure right now, if I’m speaking truthfully.

Ely’s bedroom door creaked open at that moment and I hear a sweet “Hi” float down the hallway. I returned a sweet hello back, beckoning my son to come out to the living room. His feet pitter-patted down the tile floor and he slid between the couch and recliner to get to where I was still laying snuggled under the blanket. My little one, he understands the need for a good cuddle. Without hesitation, he spotted his place next to me and burrowed in. I brushed my fingers through his hair as we both quietly laid there just being, him in his world, me in mine.

I thought of how I used to plan monthly themes and lessons for my boys. One month was “Goodnight Moon.” Titus loved that book. His first year of preschool, they had a program where they could borrow a book over the weekend from the library. His first weekend after school started, he brought home Goodnight Moon. It gave us all a good chuckle. He obviously missed the point of bringing home a new reading adventure. We read from the school copy all weekend, sent it back on Monday, and continued reading it over and over again with our copy at home in the months and years that followed. I did my mommy duty and pinned all the good stuff to teach language and comprehension from Goodnight Moon. We had a yellow chart I hung with pictures from the stories. We played matching games, made a storyboard, and practiced our words.

Ely interrupted my remembering as he hopped down from his snuggle-spot and ran over to the stuffed animal basket to grab “snake”. You might like to know we also have “duck”, “doggie”, “neigh”, and “Dumbo”. But “Snake” is kinda special. You see, I’m terrified of snakes. I downright can hardly even look at them! My brother knows this about me and has plagued me with images, videos, even real snake skin to watch my fears flood out of me in tears, screams and quick sprints away from the scene of danger. I’d like to say he’s grown out of this and that he’s matured now that he’s in his 30’s.

He hasn’t.

But I have grown in tiny steps to conquer this fear. Perhaps to some of his credit (Thanks, Brad). But also to some of the credit of having boys.

It was Titus’s second trip to the zoo. We went into the store at the end, knowing we’d likely buy something for him. I was thinking something cute and furry. He had other ideas and went straight for the snakes hanging down the far wall of the store. I felt a shiver and chill go down my spine. No joke. I tried to detour him to the penguins, or perhaps a cute fluffy lion. But he had his eyes on a green and black snake with yellow eyes, his favorite color, of course. After an inner dialogue that I needed to be the adult and this was truly a stuffed, fake animal and was not going to suddenly come to life and eat my whole family in the middle of the night, I said ok. Titus sat behind me in the car and all the way home he threw the snake at my head pretending it was attacking me. Lovely. What a boy. But it made all three of us, Titus, Daddy and I, laugh.

Ely climbed back up next to me, snake around his neck, the remaining part stretched out down next to me and again I wonder at my growth as a mom. Today didn’t feel like growth. I felt stale, depressed. I cuddled that snake and that cute little boy of mine in close. One tear fell down out of the corner of my right eye and I wondered at how it escaped without company. Perhaps it was just enough to remind me that I could still feel. I was still here. And yeah, this life still hurt. Deeply.

So much missing. I should clean the bathrooms. But I can’t. Nothing will work, hardly even my mind which is normally going a million miles a minute. I breathe, Ely breathes. I feel him, hold him tight. I used to feel Titus next to me this way. Right up to the moment he took his last breath. How I miss him. My heart aches and yearns to see my two boys together again. I can’t wait to see the two of them play and adventure in a pain-free, joy-filled place.

These days here feel so permanent. Hard. Like swimming through mud, they can be dark and difficult to move through. And yet I keep remembering that this is all so temporary. Sometimes that helps. Other times it feels like the voice reminding me of this truth is Charlie brown’s teacher and I can’t understand a word.

There is a resolve in me though. And knowing my current state and condition, I know it’s not a resolve of mine, but of the One who is greater than all this pain and heartache. I’m held. Just as I am gifted the moment of holding Ely. I breathe. My Abba – my God Almighty who fights for me, breathes through that breath and gives me courage to take another. We repeat. I’m not conquering anything today. But I’m doing great soul work in just being.

This is hard. Breathe.

This is painful. Breathe.

I’m not alone. Big deep breath.

It’s okay if all I can do is lay here next to my son. And just breathe.

Thanks for listening,

Bekah

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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