Left Out of the Jesus Club: 10 Ways Churches Can Include People With Special Needs

One evening, not too long ago, we picked up my son, Eddie after youth group. As we were driving home, I started in with my usual questions, to which he gave his short, one or two word answers. He just isn’t a man of many words.

“How was youth group tonight?”
“Fine.”
“What did you guys do?”
(pause) “Sang songs.”
“Did you sing along?”
“No.”
“Buddy, I’ve noticed in church that you don’t participate at the service. In fact, you and Layla always look like you hate everyone in the room. How come?”
(long silence)
“Eddie, you can tell me why. There isn’t a right or wrong answer.”
(loooong silence)
“Mom is giving you the car ride home to think about it and then I need you to try to talk to me.”
(I am only pushing the subject because I can sense there is a real problem for him.)

Ten minutes pass and he is still silent in the back seat. I know he is trying to think it through – process this question and formulate his answer. Just imagine if someone asked a pointed question of him in youth group! As we approach our driveway, I ask the question one more time.
“Why don’t you participate in what we do at church? You loved to when you were little.”
He is silent a minute more before he quietly speaks.
“I can’t really have a relationship with God.”
“Why not?”
Pregnant pause.
“Because I can’t even remember the stories.”

10,000 daggers into his mother’s heart. I will respect so many reasons from my children for not having faith in God, but this is one I cannot accept. Because this reason means that he believes that he is not smart enough to know God. In his mind, he can’t be in the Jesus Club.

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Photo by nappy on Pexels.com

Why did he think this way? I do daily kids Bible devotions, I read from the children’s Bible so he can understand, I pray with the kids, we do what we can to help them understand that God is with them and He is for them. Church is supposed to be a place where everyone belongs like in a family but too often and for far too many people, church can feel like a club…a very exclusive Jesus Club.

My son is most certainly not the only person who experiences this in church. Kids with:

  1.  trauma backgrounds 
  2.  various medical diagnoses  
  3.  learning disabilities
  4.  living in poverty
  5.  mental health issues

…all learn differently. Adults struggle with these obstacles as well and if they are not accommodated for at church, then the message is lost. Very little can penetrate the soul if the mind cannot understand. I am so thankful that my son could finally verbalize what his problem was in church. I believe his words speak for thousands who are not currently in the Jesus Club and can’t recognize it or say it out loud. Enter into nearly any church in North America and you will find that the teaching is all geared to a very specific level of literacy. If you can’t perform or process at that level, then you are excluded from participating, whether you or the rest of the congregation are even aware of it.

So, what can churches do to help integrate and ensure that EVERYONE in their congregations are able to fully participate and engage with the gospel of Jesus? I have attended MANY churches all over the West Coast and this list addresses problems I have encountered in all or some of these churches:

  1. Do not reward Bible verse memorization and public regurgitation skills with candy, only to leave out the kids who CAN’T perform in this way. No memory verse, no candy, and therefore, no Jesus…is what this practice teaches kids.
  2. Include in corporate worship services at least one or two songs that are more repetitive and less wordy than others.
  3. Provide a few paper copies of song sheets available in large print for people who struggle with reading and processing words from a distance. 
  4. In any multimedia presentation, if there are words to be read on a screen, be sure that someone is designated to read the words aloud. If you are a slow processor, the words are gone from the screen before you understand what it said.
  5. Have volunteers in Sunday School trained to help a child with disability or trauma behaviors. Understanding the reasons behind behaviors can also help prevent future meltdowns and leaves parents with peace of mind. Children will trust and develop positive relationships with their teachers. Nothing is more like Jesus than practicing this: looking beyond the behavior to the need underneath it.
  6. Do not automatically call a parent out of a worship service if a child doesn’t immediately calm down or is needy unless the parents request it. Ask parents ahead of time if there is a time limit to go by before calling them out. Be willing to find creative solutions.
  7. Glean information from families concerning special needs or trauma backgrounds in the registration process. Part of this should include how to help soothe each individual child.
  8. Try to keep class room or teacher changes to a minimum – for children with autism or OCD, making that last minute adjustment is enough for a tailspin.
  9. When changes cannot be avoided, let parents know ahead of time so they can prepare their children beforehand, easing that transition into the classroom.
  10. Find resources and toys for kids with sensory integrations issues (chew toys or gum, weighted lap blankets, play dough, drawing/doodling materials etc) to be used while they are involved in class discussions. They can process and retain so much more with these things available. Youth groups would benefit too!

The truth is that Eddie CAN know Jesus for himself. The Good News of Jesus is simple and it is meant to be so. Jesus came so that ANYONE can know him from the smallest child, to the illiterate, to the marginalized, to the poor, to the rich. That “WHOEVER should believe in Him will have everlasting life” (John 3:16)  We are overcomplicating this incredible message, underestimating the power of this necessary foundation. So much emphasis is on what you can learn with your brain, rather than what you can understand with your heart in today’s American Church. Remember, the majority of Jesus’ followers who spent time near him or listening to him were uneducated, illiterate, or pleading for Him to heal their ailments of body and mind. Jesus is not just a fact to be memorized, he is a being with whom we can share experience and interaction.

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God is just as concerned with our hearts and souls as He is our minds. But if we fail to help both children and adults with real obstacles in their lives to understand that simple and beautiful truth, then they miss out on the most important experience anyone can ever have:  to encounter Jesus.

 

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It Is Well With My Soul…All The Time

Several days after I checked Layla into the hospital and admitted her into the psychiatric unit of our local hospital (see Then Sings My Soul (No Matter What), the music that is usually rolling around in my head every day suddenly stopped for a moment. You know how in the movies when someone is being told really bad news, he or she is watching as the bearer-of-bad-news lips are moving but they can’t hear a word being said? All is silent, even to the person watching the movie. That’s a real thing.

I think I was getting ready to go see Layla in the hospital. As I got dressed I noticed a suspicious lump. I put the weirdness of it aside and went about my day. I checked again that night and at the insistence of my husband, I decided to make an appointment to see my doctor. Upon my visit with her, she checked, she prayed with me and we set up an appointment for a mammogram and ultrasound at a local breast cancer diagnostic center.

I found myself in the lobby of what felt like a luxurious spa and I went upstairs. Everyone spoke so softly and gently, like all the ladies in there might break. I dressed in a white bathrobe with my rain boots and jeans still on. As I sat trying to distract myself with cooking magazines or repeating phrases from a song at church in my head like a mantra “Jesus, Jesus…You make the darkness tremble…” just trying to keep the darkness from closing into my mind as I waited my turn, I couldn’t help but notice that I was by far the youngest woman in there. I almost felt silly, like I don’t belong here…maybe I should come back in 10 or 20 years.

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Photo by Miguel Á. Padriñán on Pexels.com

I had my first mammogram and then an ultrasound. After I had finished both, I just waited on the bed in the ultrasound room. Again, I felt so silly “Why are you here?… this is so dumb…” and then “it is well with my soul…” But then a man in a white lab coat walked in with my ultrasound technician. He shook my hand and introduced himself and began talking. He lost me at the words “solid mass….” and I had to work so hard to keep my face composed, I couldn’t hear a word he said after that. I had trained myself to nod my head with my best active listening postures after raising so many children and I used that well-honed skill with all my heart, as if it were the last thing I would ever do. That was when the music stopped and was bursting in silence.  Somehow, I got all my clothes on and then another overly kind person came to make a biopsy appointment for the following week.

I went out to my car and I sat down but I couldn’t drive yet, I felt paralyzed in the parking lot. So I called my mom and then my best friend with all my ugly cry voice and face in full swing. Funny how those two gave the exact response to my news: “Oh shit.” It just signifies why they are who they are to me. I pulled myself together and drove to pick up my kids. Everything is going to be FINE.

And then began a harrowing week. And songs from church echoed in my mind as I went through my days. Sometimes the fragments and phrases buoyed me and at other times the tears would just leak from my eyes as I carried my foster son to his new home on Monday…checked Layla out of the local psychiatric unit and took her straight to the airport to visit my parents a few days on Tuesday….as I took a day on Wednesday for myself with coffee and a manicure….as my husband and I went to my biopsy appointment on Thursday and I had to hear the words….”Oooohhh, such a YOUNG girl…” as the doctor walked in. She scrunched up her face when she told me they will have to use double the numbing medication they usually do because there are so many nerve endings in the location of the tumor…and Lord Jesus, she was NOT kidding…and then Friday morning, I caught an early flight to Reno to check my daughter into a long term residential treatment center where she will remain for the next few months….and then I caught a flight home Saturday morning. I came home and I slept and cried and I cried and slept all day long.

And all week long, I kept everything about these tests and appointments close, only telling a few people because I didn’t want to freak anyone out unless I had to. So while people are giving me the biggest, warmest, and most painful hugs of my life for Layla, my biopsy incision and bruises are screaming inside my head “Ow, ow, ow!!!! Jesus loves me this I know for the Bible tells me so…ow ow ow!!!!” I do yoga, so I know how to look like I am at peace on the outside.

And then the morning of my results appointment arrives. My husband and I grab some coffee, I throw on my brightest shade of red lipstick and all the while that old hymn, just a snippet of it on repeat in my head. I sang it in the bathroom as I brushed little Sue’s hair before sending her off to preschool:

…Whatever my lot Thou has taught me to say “It is well, it is well with my soul….”

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When peace like a river attendeth my way, when sorrows like sea billows roll. Whatever my lot, Thou has taught me to say “It is well, it is well with my soul” It Is Well With My Soul (Horatio Spafford, 1876)

 

It circles as we wait in that luxurious lobby, as I partially disrobe so another stranger can see all my bits and bruises to make sure I am healing ok. And I am. And then as I am putting myself back together she says, “Unfortunately, I have to share some news you don’t want to hear…” and just like that, I have breast cancer. Three weeks ago, I thought I was at the pinnacle of excellent health. Just three months ago, I had an exam and nothing was found. But since I am so young, I don’t think anyone was really looking.

She asks me if I have a good support system. Based on the past 2 weeks, I told her in full confidence “I have an AMAZING support system.” She asks me if I work. To which I quip “I can’t work, I have three kids with special needs.” And then she tells me, “So, you WORK – You are going to have to call in all your troops for this.”

Thankfully, moderate to aggressive invasive ductal carcinoma can be treated, although this will not be an easy road. I have no doubt that with all the prayers and love and support available to me, I can fight like a beast and heal completely. But I falter a little when, as I told my loving uncle I think, “How the hell am I going to do chemo AND keep Sue from eating all her brother’s deodorant??” I realized I was asking him: How do I take care of myself and take care of three kids with medical issues of their own? This is all new territory. I am too young for this. But here I am. And so with my songs and the prayers and all the love pushing me forward, we begin the fight for MY healing.

What choice do I have?

Then Sings My Soul (No Matter What)

Then Sings My Soul…

It’s a refrain I cling to so fiercely that I have it tattooed on my back. It comes from my favorite hymn “How Great Thou Art,” penned after Carl Boberg (1859-1940) witnessed the tranquility of the blue skies mirrored on a glassy sea in the wake of an intense thunderstorm. So the story goes. I grew up singing this classic from my church pew quite regularly, I can still hear the echo of the congregation enveloping me, losing myself to the sound of hundreds as one voice. It sits inside my chest, rolling around my head through the hard days. There was a day when I was brooding in my sorrow over one of Layla’s “storms,” that it came to me: even if my world is falling apart, I can still sing. God gave me this one thing that can keep me from drowning in the thick of heartache. The words are inked upon my shoulder over a purple calla lily. It is my commitment to sing no matter what. Yep, I got all that out of 4 words.

Last night, I found myself sitting in the ER, readying myself to admit my daughter to an adolescent psychiatric unit for the 3rd time in a year. Fluorescent lights glared at me, piercing the migraine that beat in my temple and I closed my eyes to block them out. And the camera dangling in its ominous half sphere from the ceiling as it watched us from above. As if that weren’t enough surveillance, the technicians sat in the hall watching us or repeatedly checking their cell phones in their boredom.

I cracked an eye to peek at the child I can hardly recognize any longer. This past week she had inexplicably fallen so far so fast. One day she came home from school, happy to see us. Later that night she stepped into the shower, and came out completely cracked open. Something shifted in that steamy bathroom and she hasn’t been the same since. Her grasp on reality has nearly been severed, even when her mood is stable. Our world has turned upside down and there is a finality about it this time.

So, then sings my soul.

I needed to shut it all out: the cameras, the technicians, the fluorescent lights, the screaming toddler in Room 7. Everything that feels so ugly.  Under the circumstances of the last 4 years, I have not been able to sing publicly or lead worship as I once did at church. But, I remembered my commitment to sing written on my shoulder. I tucked us inside a cocoon of songs I have always sung to her, since rocking her in my arms as a young mother full of hope and wonder. Each of my children have a song that I sing only for them. So I sang hers. “I just want to snuggle you, Mama. That’s my song, you are going to make me cry…” Then, I played all the songs on my cell phone that she loved so much as a little tiny brown eyed girl. And before I knew it, she was singing along with me. We sang quietly snuggling in the hospital bed for two hours as we waited to move her into the psych unit. Nobody stopped us or bothered us and in those precious moments, I had my little girl back. To find her, she had to be shut tight away from the world, sitting in a cold hospital room, enfolded in the music that took her back to a time when the world felt safer for her. I am so afraid I will never share a moment like this with her again.

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It felt like springtime on this February morning, in the courtyard birds were singing your praise…” lyrics from my song for Layla, As I Lay Me Down by Sophie B. Hawkins. Layla was born on a sunny morning in February 

They came for us, we walked through the hospital’s labyrinth for the 3rd time. We passed the unit she was born in. We passed the gift shop where my mother bought her a purple preemie outfit that was too big for her. I remember that first night she and I napped together as she snored on my chest in a hospital bed after 36 hours of labor. And then we arrived at the unit that no parent ever wants to visit their child in. And yet, here I am again. I was frisked, metal detected and allowed through 2 separately locked doors. We checked her in but will she ever leave for good? She hugged me hard when it was time for me to go. “I’ll see you in a few days. I love you,” I whispered.

I walked 6 blocks in the dark as I have so many times before on a night just as horrible as this one. I was cloaked in the midnight strolling the streets and somehow it soothed me a little. I felt my smallness, my futility in the face of my child’s broken mind. But I did not feel alone. I got in my car and before I could drive home, I cried forever. I thought all my tears had been cried out by now. But this time feels like a strange “good bye.” I don’t understand this feeling but there is this sense that the girl I poured my whole heart into raising, the little girl I once knew is gone for good.

Maybe it is just simple grief. When you break it down, I think grief is just a thousand unknowable, unforeseen, and unnamed goodbyes that hit you in a tidal wave all at once. Everything you have lost before, all that you lose today, and all that will never be. Yet, I always find Him there in the tidal wave. And I find I can accept whatever comes, at least I think I do. Today anyway.

What other choice do I have?

 

photography of barrel wave
…then sings my soul, my Savior God to thee…How Great Thou Art!                                                    Photo by Emiliano Arano on Pexels.com

 

 

Forgiveness: Layla’s Story Re-written

This story starts with a virus and ends with forgiveness.

{And it is told with her permission.}

It is unbelievable, but the largest culprit for my daughter’s mental health decline was a little virus called Cytomegalovirus (CMV). My best guess is that she contracted it while her worn out little 8 year old body was busy fighting repeated strep and tonsillitis infections. Evidently, it sat in her system and waged war on her body and brain for the last 5-6 years. We spent all this time searching for therapy, medications, genetics…anything to explain why a seemingly healthy child could slide into a mental health decline so severe, so unpredictable, so out of control that it destroyed much of her life. The answer was deceptively simple yet so difficult to find. Because no one was looking for it.

One of the complications of CMV is that if it sits in your body long enough, it can cause encephalitis or brain inflammation. We took her to a special clinic after too many doctors were unable to help her. Her brain scan was lit up like fireworks, nothing but red. After 3 rounds of tests including about 40 vials of blood, we discovered CMV. Brain inflammation can look like severe depression, delusional thoughts, and psychotic episodes, and it feels like out of control schizophrenia. She had every psychiatric symptom known to man. She had no control over her thoughts or moods, how she perceived the world, and how she destroyed the friends and the relationships she had. This is how she suffered for years.

We immediately put her on an anti-viral medication and immune support supplements. For a week, she vacillated between psychotic episodes and totally happy go lucky, sweet Layla. Then, on a Wednesday, after all these years, all of the worst symptoms she has ever experienced just completely vanished. We haven’t seen them since that Wednesday. We have our beautiful, sweet, loving child back. But it’s like she has been living on Mars for 6 years and has suddenly transported back to earth — the world she knew is in shambles.

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As I said before, her relationships have suffered. Her family has suffered. Many of her childhood friends are gone. And the one person she held closest to her has distanced himself completely – her little brother, Eddie. When they were small, they were the best of friends and had the sweetest relationship I have ever seen. Epilepsy and CMV destroyed all the good.

This did not go unnoticed by their mother, of course. It was Easter morning, Eddie and I were driving to church when I brought it up to him. “You seem like you are bitter and angry toward your sister. Are you having a hard time getting along with her?” He sat there very quiet. So I continued, “It seems to me that you are having a difficult time forgiving her for all the times she has hurt you. That is a very hard thing to do. But you need to realize, even if you thought she was doing it on purpose…she really wasn’t. Remember when you had seizures and it made you do all kinds of weird stuff you didn’t have any control over?” He nods his head yes. “Well, it is the same with Layla. Her brain had so much inflammation, like it was running a fever. It put words in her mouth, ideas in her head, and made her do things that she would NEVER do if her brain was healthy. She didn’t know what she was doing.”

So we talked about how hanging on to his anger will hurt her but more importantly, it will turn into bitterness inside him. And bitterness will make him nasty. We talked about how to forgive her, how to let it go. When we are unforgiving, it is like we have chained stinking, rotting garbage to ourselves.

“But I don’t know how…” he says.

It’s Easter, for crying out loud, so I ask him: what did Jesus do on the cross and what happened on the 3rd day? What was it for? Ultimately, forgiveness of our imperfections so we can have a loving relationship with a perfect God. If God can forgive Eddie, Layla and Mom of everything, then we need to forgive Layla for the things she didn’t know she was doing. Once, a pastor of ours said that when we can’t do it on our own, we need to ask God and borrow some of his forgiveness. So we can look at Layla and let go of the parts that hurt, so we don’t hang on to it like rotten garbage and we don’t hold it against her.

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After church that day, we sat down together as a family. Eddie wrote down what he couldn’t say out loud to his sister, “I am having hard time letting go being angry at you. Forgive me.” It never occurred to me that he would think to ask her for forgiveness, but I think he was right in doing so. Their relationship is still restoring itself, and it will take time but the hardest part is over. And my guess is that he will have to go through the process of forgiving more than a few times in the coming months and years. He will have to choose forgiveness and fight against bitterness.

 

Now Layla has to learn to forgive herself for the things she had no control over. And for the things she did have control over. She has to learn to receive forgiveness from the people around her who love her, who cannot and will not hold these things against her. Once she is able to grab ahold of it with both hands will she truly heal inside her heart. Forgiveness is a gift. And with this gift, she can rebuild her life. She can be the friend, the daughter, the sister, the young woman God created her to be. This road began with a virus, but it ends with forgiveness. The riches she has to glean from this experience are yet to be uncovered. There is power in her story if she can hold on tightly to forgiveness and faith – it can work for the good (Romans 8:28). Our stories can always be re-written like it says in Isaiah 61:3 ~

…for Layla, who has grieved in Zion—
to bestow on her a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,pexels-photo-235615.jpeg
and a garment of praise
    instead of a spirit of despair.
Layla will be called an oak of righteousness,
    a planting of the Lord
    for the display of his splendor.                                                                                                            

 

 

A Steady Kind of Hope

They say if you are sea sick, to look out toward the horizon. Or perhaps, focus your gaze out at one stationary spot as your boat bobs atop the waves. That is great advice for someone who only suffers a little upset stomach. But if you are truly SICK from the motion of the ocean, you are in the fetal position in the bottom of the boat, eyes glued shut in misery, just surviving from moment to moment. I know the difference only because while whale watching a few years back, I was the person who still had the wherewithal to look out at that horizon while my son, Eddie, was rendered immobile in the bottom of the boat when epilepsy still racked his brain and vestibular system.

 

They say to “trust the Lord” and to put your “hope in the Lord” when life tosses you around in a similar way. But what is usually meant when kind people say these things is “Trust in miracles, pray for healing, believe that God will make it better.” Some of us know all too well that when you are in the bottom of the boat, these are false hopes.

Over the last 10 years, my view has changed about the idea of HOPE. Because children have epilepsy and are never cured. People get cancer, receive excellent medical treatment, they are prayed over diligently and still, they die. Families are torn apart by mental illness despite their best efforts and most heartfelt pleas to God. Does this make God cruel and heartless when it seems like he doesn’t hear or answer our prayers? I don’t believe so. I believe that He is good, even if life’s circumstances aren’t. He never changes. There are so many things I don’t understand about the mess of chronic illness in the lives of people.

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But one thing I do know: God is more concerned about healing our hearts than he is about healing our bodies. Too often, well meaning people want to hope and pray away sickness and never understand that there is something to be gained in  knowing God and his heart for us both in sickness and in health. Since we have grown accustomed to engineering our prayers around avoiding suffering or struggle, there are things about him and there are things about ourselves that we never learn.

I let myself stay stuck in the bottom of the boat for a long time. There have been wonderful times when the waves died down a bit, and my husband and I could breathe and look out again at a clear horizon. But inevitably, storms churn up and we find ourselves holding onto each other for dear life. I know that numb feeling of hopelessness, dead ends. A parent who watches their children suffer over the course of years with little reprieve, is clinging to primal prayers. At times, that was all I had. That andfistfuls of anger when I was constantly let down. But while parents do everything in their power to help their child from a medical standpoint, there are no guarantees and most often the miracle prayed for never come. When you are in the thick of it, you just have to keep your head down and get through the day, get to the next appointment, soothe the child, make dinner, etc.

 

When you live with chronic illness in your family, you can’t afford to hang your hope on getting better. Most often, very little in your circumstances will change. Sometimes they do and bless that wonderful day, but you can’t live inside that hope, or what I now consider hope as “Wishful Thinking.” No, that will not do at all. You have to live and cope within your current reality. I made the mistake of hanging my hopes on every new doctor, therapy, medication only to be grossly disappointed – a feeling akin to being kicked in the stomach. You become a yoyo with your hopes set so low and set upon transient things. You are the person stuck in the fetal position in the bottom of the boat, faith and emotions tossed around on careless waves. Would I change what I did to help my children? Absolutely not – But I would have done it with a major paradigm shift.

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We have this hope as an anchor for the soul, firm and secure (Hebrews 6:19)….

….this God who is an anchor for the soul, He is that stationary object on the horizon…He alone is hope. It took years to fully realize that when I used to say my “hope is in the Lord,” I really had a bunch of wishful and hoped-for contingencies attached to that phrase. My focus became healing my kids instead of knowing God. But here, in this place, I can peek out of the boat (while I white-knuckle it’s splintery side). I can’t be a good parent, nurturing brain-sick children while hanging my hopes and prayers on nothing more that wishful thinking. I don’t have a choice if I want to be strong and resolute for their sake. I can stand firm even as the world around me crumbles. Maybe when my faith is perfected, I will stand up in the boat, get out and walk on the water toward that setting sun. For now, to be a solid parental force, loving my children through extreme circumstances, my focus has to be that Unwavering Presence on my Great Horizon, simply remembering daily:

“He will go before you and will level the mountains; He will break down gates of bronze and cut through bars of iron. He will give you hidden treasures, riches stored in secret places, so that you may know that He is the LORD, the God of Israel, who summons you by name.” (Isaiah 45:2-3)

 

 

 

Mothering Epilepsy – An Isaiah 58 moment

October 2013 – The good days feel as though you are reliving the best day of your life all over again. And the gratitude is so strong and the love so deep, they dwarf the shadowy fear riding your back on the hard days. There is so much that is uncertain with epilepsy. I fumble each day trying to figure out this ride. Or, how to walk in it with grace and genuine acceptance.

You never know when seizures will hit, how bad they will be, or how long your little boy will be down for the count. It is our dear friends’ wedding day. Everyone in my family plays a role in the beautiful ceremony except for me. Two hours before the guests arrive to witness the sacred event, Eddie is clobbered with a seizure. Acquaintances watch as my son’s head lurches, his arms convulse and his neck stiffens. But that isn’t the scariest part. It is the look — the desperate, wild VACANCY in his eyes. And we watch as these electrical mis-firings in his brain steal my happy vivacious son away for the afternoon. He lingers in a partially catatonic state for 2 hours. His brain exhausted in every sense of the word.

He will never remember how I walked with him around the beautiful acreage of this quaint ranch in Tucson. He won’t know how the poor photographer couldn’t get MY joyous, smily son to just smile for the camera. Or how I crushed him to my chest, trying to coax his mind and body back into the land of the living. He won’t remember that I rocked him as he made whimpering noises, soft and so terrifyingly primal. Or how I quietly begged him to please wake up and give us a smile. I have rarely felt so helpless in my life as in these moments.

But suddenly, just minutes before the ceremony begins, Eddie wakes up! And he is ready to GO and he plows down the aisle when it is his turn, set on his mission to announce that the beautiful bride is coming. Hooray! And my relief is a cascade – We haven’t let our dear friends down on their special day.

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Looking up from the dance floor

Eddie sits in my lap as the ceremony continues. I look down at him and I see all the smiles I had begged for while he was gone beaming from his exuberant face. I think of Buddy the Elf and how he can’t stop smiling because smiling is his favorite! And all these goofy grins are meant only for me. He is happy to see me again. Like I am some long lost friend he hasn’t seen in years. It is a bittersweet feeling to have him looking at me like that, when I was here trying to bring him back all along. And he doesn’t remember. And somewhere in the ceremony, the singer begins a song I know well and have sung often:

There is nothing worth more / That will ever come close / Nothing can compare / You’re our Living Hope / Your Presence / I’ve tasted and seen / Of the sweetest of loves / Where my heart becomes free / And my shame is undone / Your presence Lord

As the music and the lyrics poured over me, my loving and happy son wouldn’t take his smile off me. I was encased in such innocent, devoted love rising up from him and flowing down from above. Scripture says in the Old Testament that God inhabits our praise and literally hovers over our corporate worship. That imagery has stuck with me. and I sensed it in this moment. I whispered the words and felt them in my bones. My “why’s?” were silenced while I sat overwhelmed in Living Hope. We haven’t been forgotten. It is probably the most tender moment of my entire motherhood, borne out of desperation. Long after the song ended, my sweet boy continued to smile into my face. As though he was telling me that he heard my pleas while he had been away. The ceremony ended, dinner plates filled, and dancing began. And with that, we lost him again. We made our way to the Emergency Room with too many violent seizures increasing in frequency that day. Our joy-filled moment had ended.

But now I see.

I must simply mother him the best I can. I will try not to complain or glorify the inevitable suffering this brings to him and to us. I am chosen to love him and speak on his behalf. To mother him in place of the woman who no longer can. I am going to keep trying as hard as I can. And love more than I really know how. I would never have chosen this and I still ache for it to just go away. Even so, I choose to live by Isaiah 58 and tattoo it to my body so I never forget my end of this covenant that took place in my heart at someone else’s wedding:

If you do away with the yoke of oppression, with the pointing finger and malicious talk, and if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday. The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. V. 10-12

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I had Isaiah 58 forever inscribed into my arm during the Fall of 2013 to remind me of what God has taught me in the midst of mothering epilepsy

 After some very dark and uncertain years,  challenging my faith as I white-knuckled the promises of Isaiah 58…Eddie has been seizure free for over 2 years and he no longer has the epilepsy diagnosis. Miracles do happen.

Shifting shadows in the sun

 

I was sitting (staring blankly) after an ordeal sending my daughter to the hospital this past week, with the possibility of inpatient treatment for her uncontrolled mental illness. I was drained and slightly catatonic trying to readjust to life in the warmth of my comfortable home. I spent 24 hours seeing the world under fluorescent lights and walking through sterile halls – Sleeping under the survey of watchful cameras and strangers I will never see again. Hopefully. The luster of my hardwood floors repeatedly caught my eye as the tree outside our window cast furtive and fleeting shadows of the leaves playing in the wind. The shadow moving against the light continued to grab my lost attention and drew me to look up toward the sharp light cascading in.

Shadows move in traveling light
Undetected at their leisure
They cast a stagnant pose

But as the shadows shift
in the halted noonday sun
The eyes tease tricks
While the wind plays fast
An unheard tune
for the phantom leaves to dance

their contrasting ruckus
crisscrosses my floor
Returning my gaze to the Light

Mental illness casts a shadow over our family’s everyday life. As it shifts in its unpredictability, I find that the uncertain way it teases and wobbles our equilibrium continually brings me back into a place where I look and strain toward the one place that I can find peace, in Christ alone. And as I outwardly sit in silence, my heart and mind are screaming out to Him. I remembered in my waking moments earlier that morning, before I opened my eyes, I was crying out from the deepest parts of me, “Please. Please make a way.” But these things you won’t see as I sit on the couch, watching the shadows play on my floor. And you won’t see it when I smile at you and hug you “hello.” These are the shadows inside, but I hope somehow, light still shines out of me next time I see you. Today, I laughed out loud willy nilly, so its glimmer must still be there.

After the ordeal ended, and we checked out of the hospital, we made a new plan to try to help her heal. And try to help us heal.  It doesn’t include a hospital, but intensive therapies and medicine changes in my home. With an entire support team intruding upon the eco-system of my house. If it wasn’t before, it’s about to get REAL up in here. More shadows lay ahead, but in that, I keep close to the Light. Straining harder so I don’t miss the mark. I need the light when I am standing in shadows. And shadow is what helps us bring light to a piece of art. This heartache? It must be a work of art. But it doesn’t feel very beautiful from this side of it.

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Response to daily prompt Shadow