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.

Playing For Keeps – A brother and sister kind of story (part 2)

 For the first half of this story, click here:

 Playing For Keeps -A brother and sister kind of story (part 1)

Over the course of 4 years, Leila and Eddie shared a sweet bond that I rarely see in other siblings, including my own sibling relationship growing up. They were siblings and  more importantly, they had become friends who enjoyed playing together. Water gun fights, nerf wars, board games, video games – We had so much fun as a family! When the going gets tough, get out and play together. And let’s be real, when you are a frustrated parent, there is NOTHING more therapeutic than spraying your kid in the face with the garden hose. I just saved you a $125 counseling session – you’re welcome.

One summer, Eddie’s behavior started turning violent, panicked and bizarre. To the point where I had to sit on him in order to keep him from tearing his room or his things apart. After too many bruises on my body, exhaustion at the overwhelming task and ultimately exasperation, I took him to the pediatrician. She referred us to a neurologist. We did the obligatory EEG during our 6 week wait to get an appointment and I knew as I watched his face in the flashing lights that something was VERY VERY wrong. I got a call from the pediatrician’s office a few days later and they gently told me that the EEG had recorded seizure activity. My stomach dropped, and once I hung up, I bawled my eyes out. The first thing to hit me was guilt. All the times he had gotten in trouble and he it hadn’t even been his fault. Then, I had to call my husband and break the news. It was too much to bear for quite a while.

img_0610So from there began the hospital stays, emergency room visits, the therapies, the counseling, more testing. And all the while, Leila was watching her brother as his medical needs took over our lives. All the focus and attention surrounded him. And it impacted her, deeply. It is the nature of having a child with a medical condition. She did her homework in clinics, waiting rooms, hospital rooms, at friends’ houses, at relatives’ houses…. everywhere but where she should have been – in the comfort of our dining room. It took it’s toll on her. Over time she became resentful and craved more of our attention and I remember telling her how sorry I was that this was our new normal. When one person is affected by special needs, the whole family is impacted one way or another.

Sometime during these initial months of his epilepsy diagnosis, Leila had her first psychotic break. I won’t give any details as to what that looked like but it changed her completely. And her brain manufactured its own paranoid reality. I searched desperately for help for her. Someone, anyone who would diagnose and treat what I knew was mental illness. Instead, I found counselors who told me she just needed to be loved and valued. No psychiatrist in the area was taking new patients. No one. No help. Nowhere to turn. I finally found a therapist just out of college to take her as client. She saw what Leila’s diagnoses should have been back then…the same ones she actually has today. So Leila saw her regularly for 18 months and it helped very little since you can’t reason with psychosis – It just doesn’t counsel without medication keeping it under control or at bay. So, her brain began developing terrible behavior and thought patterns that did incredible damage that will take years for her to overcome.

Her brain decided that Eddie was doing everything he could to steal attention away from her and to get her into trouble. Her mind turned him into a villain. And the collision of each child’s special needs with the other derailed their entire relationship. I could not convince her of anything different than what her brain perceived. Play couldn’t fix this…yet.


Fast forward another 4 to 5 years – Eddie’s epilepsy has disappeared. Leila is living in another state getting mental health care and is finally properly diagnosed and in treatment. Both children have come out of a living hell. So have their parents!  She came home for a mid-winter break last week and I saw a Leila I hadn’t seen in years. She is happy, she is playful, she is loving. But her brain still believes that Eddie is her enemy. Although, it isn’t as bad as it once was, this relationship needed fixing. Time to retrain some messed up neural pathways that won’t just heal on their own and it was the perfect opportunity to start!

So what did we do? Why, we played of course! We started over, from the basics. We made sure to engage in activities that we knew both kids enjoy. As tweens/teens their “fun” has changed but not too much:

Let’s go hike our favorite trail and hit up our favorite greasy burger joint afterward…

Leila and Eddie, why don’t you two go play Legos while Sue is napping…

Sure, you guys can play video games together for an hour….

Leila, you need to just sit next to your brother for the car ride home. He won’t bite…

Both of you please just go outside and play with your little sister in the backyard…

Guys, go put on your nice clothes, you and dad are going on a date to a posh sushi joint…

FullSizeRender-2…and for the first time in years, I heard them belly-laughing and they were enjoying each other just like they used to. I did have to convince (force, push, insist) Leila to engage, but once she did… it was like old times. I didn’t think the fun would ever happen again. The damage felt irreparable at the time. But they are remembering that hey, he/she isn’t so bad after all! They are loving each other again. There will be bumps ahead, but as long as we can keep her mental state healthy, it’s nothing a little playtime can’t fix.

I stood at the window the last half hour before it was time to take Leila to the airport as all three kids screamed with laughter. I couldn’t take my eyes off the little bit of heaven I was seeing and grateful tears stung my eyes. But it felt so good. This time, we didn’t want her to leave. So this summer, bring on the water guns!

 

Playing For Keeps -A brother and sister kind of story (part 1)

My two oldest children, Leila and Eddie, have had a unique relationship from the very beginning. Leila was 2 when we began the adoption process to bring Eddie home from Liberia. We prepped her tender heart during the entire process by talking about bringing a brother home, praying for him every night at bedtime, and we let her help us decorate his room. She even chose part of his name. He kept the name his birthparents gave him but Leila added to it from one of her favorite preschool songs that thankfully also happens to be my father’s name (remember, Eddie isn’t actually my son’s name).

FullSizeRender-5The time had finally arrived. So, we drove the 2 hours to the airport, stopping for a very special dinner at one of our favorite German restaurants as a last supper with Leila before her little brother arrived. Afterward, we checked into our hotel and headed to the airport. I brought lollipops to win him over because we had no idea how this was going to pan out -A little African boy just getting off the airplane and leaving the airport with strange white people who speak a language he doesn’t understand might cause a traumatic scene. You just never know.

9:00 pm…We were ready, waiting in the airport and thankfully there was a little play area to keep Leila occupied. So we waited and waited.

10:00 came and went.

10:30

Then 10:40…I started to panic as groups of people had come through from vacated flights and I didn’t see any blond 20-something young ladies with a little African child in the crowds. There was no way I could leave that airport without a brother for Leila!

11:00 pm…There! I saw the top of his head bobbing up and down as he tripped along through the terminal withe a blond haired young woman holding his hand. I just knew in a half second HE was my son. With a yelp and his lollipop clutched tight in my fist – I ran to my boy. I couldn’t have forced my feet to walk if I tried. I dropped to my knees and searched his dark eyes with long curling lashes. I unfurled the wrapper on his lollipop and offered it to him. I don’t remember what I said while I gently spoke, I just remember him. He spotted her as she approached and then Eddie limped a few quick steps to Leila, bent forward and threw his arms around her in a big awkward hug and he squeaked a big “Duh-Dah!!!!” right in her ear. Eddie embraced Leila first.


I wish I could say they just fell together into an easy exchange. That is for fairytales. They were two strangers thrown together with no common history, culture, or language whatsoever. Leila found it difficult to adjust to who Eddie really was. She had specific and as yet unmet expectations of him that he couldn’t deliver. She wanted Eddie to immediately be that confidante she could tell all her 3 year old secrets to. Well, he wasn’t that by any stretch – at first. He was a loud, rambunctious, energetic, wild clueless little boy of very few words or manners. His main goal those first 6 months was to eat everything in sight as he was horribly malnourished. But he was a lighthearted, happy guy just looking for a fun time.

img_4251We had to find a way to help them establish their relationship, so it was up to us to give them the tools to build it. I made it a point to have them engage in play activities they could do together successfully. I noticed that they both enjoyed water play – so they took an inexplicable number of baths together each day for a while. That was just in the beginning, of course.

Play is a universal language. This, I discovered while studying in India. I had the opportunity to play with a big group of children whose parents were migrant workers in Southern India – They taught us college students how to play their version of tag and we taught them how to give high-fives. I will never forget it – there was something about the fun that bridged an enormous language and cultural chasm. And this was the glue we used to fuse Leila and Eddie into a brother and sister. It was a long process that eventually worked but I think much of the success was due to the fact that mom and dad were involved in the play, facilitating the action. We could wean ourselves out, but our participation was crucial in the beginning stages. It is true what they say – the family that PLAYS together, STAYS together.

They needed each other. Leila taught Eddie some of the ropes of being a kid in the United States. He mimicked what she did and some of what she said while they played. Language was difficult for him, learning anything new at all was difficult and we couldn’t understand why (Much later on, we would discover that he had epilepsy and intellectual disability, which were stunting the learning process).

Through his joyful and charismatic nature, Eddie taught Leila how to have fun and how to be a lighthearted child. She was a somber, overly sensitive little girl holding the weight of the world on her tiny 3 year old shoulders (Now we know her mental health issues were probably gearing up even back then.) She needed someone to take the focus off herself.

FullSizeRender-2In time, Leila and Eddie developed an uncommon bond. They balanced each other’s needs because they were so different and each child had much to offer the other. It was sweet and it was fun to watch them. They could play together for hours and rarely came to find me, crying or fighting. They took care of each other. It wasn’t perfect but the strength in their relationship was such that even all the frustrations of Eddie’s learning difficulties were not enough to hinder their love for each other during this time.

After four years, it all but unraveled as Eddie’s epilepsy and Leila’s mental health problems collided…

For part 2 of this story, click here – Playing For Keeps – A brother and sister kind of story (part 2)

“Self Care” and Parenting a Child With Mental Illness

I have stepped out into the light, having trudged through the fog of parenting a child with significant, untreated and/or misdiagnosed mental illness for 10 years. This is because of a lack of mental health resources, not for lack of effort in trying. After battling through this past year in the midst of the worst I have ever seen, I have learned some powerful truths. And in accepting them, I find light. As I rediscovered my role in my daughter’s distraught life, it felt as though that vessel that holds all my heartache, you know that tender achy place just behind your sternum?…just completely shattered. I reached my limit for heartbreak and then I found mySELF bouncing back.

Throughout this past year, there just weren’t enough glasses of wine, bubble baths, or coloring books to ease this constant state of crisis. The best “self care” I could possibly give me was to redefine my parental role to a mentally ill child. I took all I have learned through my personal experience growing up with mental health issues (I had excellent and accessible mental healthcare to navigate them), my professional experience and training as a disability accommodations specialist for 5 years and foster parenting. I gave myself some grace and some distance from this past year with Layla, and I have learned some things that might be helpful for others in similar situations. For their own self care.

  1. People with significant mental illness still have brains that rationalize – but not the way you think. From a young age, we are taught to reason and rationalize, so the brain will try. When the brain feels intense emotions, it needs a reason for those emotions. The problem with depression is that there isn’t a reason or circumstance for those feelings to attach to, it is a chemical imbalance. Nothing in the environment is causing the pain, it is just there because the brain is producing too much or too little of some hormone. The rational brain doesn’t know that. As a result, that person’s closest relationship(s) often suffer the most. They very often believe you are to blame in some way so you undergo a lot of bizarre accusations and abuse. Understanding this helps us not to take the accusations personally, but it still wears us out.
  2. I am not the cause of my child’s suffering. It is truly not my fault that her chemicals are imbalanced. I did not cause this problem. Layla’s reality and that of the rest of the world are not the same, so she honestly believed the terrible things she accused me of. But once I realized that I did not have to accept her accusations or reason with her, I looked her right in the eye and said, “I do NOT accept that. I am not in charge of your happiness or your pain. I have done everything I can to help you get the medicine you need and I love you. You will not put that burden on me and I will not accept it.” Saying it out loud made me realize how true it really was and freed me from a guilt I didn’t realize I was carrying.
  3. My child’s mental illness is not a reflection of me or my parenting skills. I no longer feel the need to put out all the fires she starts (figuratively speaking).  If she destroys every friendship she has, I cannot do enough damage control to keep up. I can only hope for understanding from other parents. The consequences of her actions will be what they must. So mostly, I have to take pre-emptive action where it is possible (i.e., no social media, no sleepovers, etc). She is still being taught right from wrong, but that doesn’t guarantee that she is learning it since she is not living in reality. Otherwise, I have divested myself of the sense of inevitable failure of such an impossible and monumental task – until she is healthy again.
  4. Just because you love your mentally ill child and they live in a loving family, does not mean they feel or are able to receive that love. I can provide a loving, nurturing environment with plenty of intentional points of interaction and model healthy relationships for her. But she is not picking up the cues or reading the memos when the synapses are not firing properly in her brain. From what I have seen, I notice that if left untreated, the synapses begin creating unhealthy connections and develop behaviors that don’t reflect the environment he or she is in. Therefore, the capacity for healthy relationships through life can become significantly jeopardized. It is crucial to be able to medically treat the synapses and hormones and retrain the brain through therapy to become a healthy adult capable of loving intimacy.
  5. Parents of children with mental illness desperately need breaks and the child needs “fresh starts.” So once you have upheld those boundaries and the child continually barges right through, careless of the consequences and there is literally no material thing or privilege left to take from the child, and you have had enough…it is time for a time-out for everyone. Especially the parent. We packed Layla off to a relative or close friend’s house for the weekend countless times. Everyone could breathe again. And upon returning home, we gave back all the privileges and started over. Of course, it is often only a matter of days before we were back where she left off, but it is a kind reprieve for everyone.
  6. In some circumstances, you find that you have reached the end of what YOU can do for your child. In the worst of it, with no where left to turn for medical help that would actually benefit my child, I had to release my role – temporarily. Since mental healthcare is largely inaccessible where we live, and all of the resources available to us were completely exhausted and useless, we decided to send her to live with relatives who do have access to quality care in another state. Once we made the decision, I told her, “I cannot provide you with the medical help you need where we live, I cannot parent you when you are so medically unstable, you need to go to a place where you can get that help. And then, when you have the medication and tools you need to cope, we can try this again.” I did ask her if she wanted to go. She immediately said yes. I am fully aware of how fortunate we are to have such an opportunity.

I know that I have done everything in my power to help my child. I no longer have to hold myself responsible for things that aren’t mine. I can let go. I am able to heal now. I can be a friend to my friends again. My sense of humor is returning. My other children feel safe, loved and stable. And someday very soon, after she is properly diagnosed and with the proper course of treatment, I believe she will return home and become a strong, capable adult with fulfilling and loving relationships. She is already on the right track and she is healing so I have hope for her again.

Light.

 

Erased Faces

Eddie was all jazzed up, ready to go burn the turf at the district-wide track meet after school today. He had been going to track practice and running his soccer drills with his soccer team for weeks now. This was for real. So we pulled up to the school hosting the event and it was abuzz with parents, coaches, kids in their school colors, strollers, leashed dogs swarming all over the track and field. One coach was yelling through a megaphone but getting through to no-one. To be fair, the ‘mega’ part of the phone was pretty chintzy. It was the quintessential unorganized, haphazard elementary school event. Everyone was excited – kids running around “warming up” while parents were either trying to figure out what the heck was going on or chit-chatting amongst themselves.

Eddie decided to warm up at the standing long jump where a pack of old friends and acquaintances were doing the same. But something felt a bit off. I noticed that kids would try to nudge and say hello, but he just stared off into the distance waiting his turn. And then, Sue grabbed my attention with her general naughtiness and I had to chase her down. A few moments later, away from the standing long jump, I saw Eddie make his way toward another side of the field. (Look a squirrel…nope, just Sue running off again on her fat toddler legs.) I looked up again, after I caught my “squirrel” and noticed that Eddie was surrounded by a group of familiar kids from his old school and a parent. He had his back turned to the parent (who I have known as an acquaintance for a few years), staring off somewhere….I don’t know. Then my stomach dropped. Something was off, there was no smiling and  no “happy to see you again” gestures. Everyone seemed troubled and tense. We saw it at the same time and my husband and I darted over in the same split second to try to figure out what was going on.

As we circled around, I overheard a little girl that Eddie had an enormous crush on say, “…what do you MEAN you don’t remember who I am? We sat together at lunch every day last year!” That is what her words said, but her tone meant – “Wasn’t I important enough for you to remember me even though we haven’t seen each other for a while?” She was hurt. The group thought he was just being a jerk. And I wasn’t prepared for this. I never am in these situations. The father was trying to coax something polite out of Eddie. But all Eddie knew was that he was surrounded by people he had never seen before in his life. And these strangers had expectations of him he could not fulfill. He knew he should know, but nothing was coming to him. I could see his embarrassment and uncertainty.

So I had to speak up, he really really wasn’t trying to be rude or hurt anybody. But hurt, confused and upset they were. Rightfully so.

Stop for a second: imagine walking up to a friend (or even in our case sometimes – a relative) you have known for years, spent meaningful time with, or even shared your every day life with. You spot the person after a prolonged absence and run up to say hello, glad to see them…only to find he or she has no idea who you are. It would be very difficult to believe. I mean shoot, our brains are wired to be able to remember every face we ever see. We may forget their names or where we know them from, but it is rare that people actually forget faces. Not so for Eddie. Everything from his side of their friendship has vanished.

Blank. Dark. Empty. Nothing. Nada.

Anyway, I had to speak up so his old flame would know. I didn’t even know what to say. So I did the best I could, something like, “Oh honey, it isn’t you. He really doesn’t remember you. [Eddie walks away to another part of the field] His brain cannot remember people or places if he doesn’t see you every day. He can’t help it. But that doesn’t mean he didn’t enjoy being your friend when you were with him every day.” How in the world to help her understand? I felt terrible. I sounded so unnatural and unoriginal. Her father is a nice man and we talked some more for a while and he was as understanding as he could be under the weirdness of it all. I could see the effort to grasp what I could possibly be talking about but she was just as confused as she initially was. I pray she understood he was not trying to be mean to her.

But I wonder…if her face and their shared experiences are erased from his memory, are they still friends? Can that chasm be bridged? It is so complicated. Friendships are complicated. What does it really mean to BE friends. If he does not return the affection, the memories, the commonalities of the past between them, then where the heck does that leave her? These things don’t really occur to you until there is a sudden void. It is all gone BETWEEN them. She still has those things but they no longer share it. No recognition – she is not reflected in his averted gaze anymore.

And my heart broke for them both and it leaves a pit in my stomach. The FIRST girl he had a crush on, he will never remember. These are things we are supposed to carry with us into adulthood. Things to wax nostalgic about when he runs into her sometime in his late 20s. Or something like that. For her, this friend she cared for and laughed with (and AT, believe me!), is gone. But not GONE, gone. Not dead. Its so bizarre even trying to explain it. This is not the first or last time someone has been or will be hurt because Eddie forgets a person he truly cared about. They will have to start over. And over again.

And then my egocentric mother-worry my mind spiraled…how long would it take for him to forget my face if we parted for a very long time without any contact? Chances are, he will be living in my basement until death do us part, so I don’t have to worry. My friends, my family that I have not seen in person for years, I can’t fathom not knowing them – that they would be lost to me and I wouldn’t know it. I am grateful for each person I have shared some part of my life with now more than ever.

Later, as I looked on, his coach and teammates cheering him – the ones he remembers for the time being – as he won his 75 meter dash, and I couldn’t stop my aching, clenched jaw and hot tears. Because there is no such thing as a one-sided relationship. And it isn’t fair.

 

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.

__________________________

Response to daily prompt Shadow

 

My Hope – Above the Clouds

I have said before that I write to process my life – circumstances, my family’s needs, our heartbreaks, our victories, our joys, everything that swirls in my blender of a mind. I often don’t really know what I think or believe until I write it down.

So, today I share 2 poems, written almost exactly one year apart and over the same life circumstances. Namely, the health of my son who has epilepsy and Intellectual Disability diagnoses. Traversing the terrain of his world, armed with an extremely vulnerable brain leaves a parent lost and powerless. We spent 7 long years begging and pleading school districts to help us accommodate him and we whittled away thousands and thousands of dollars searching for diagnoses. I spent days and nights on my knees (sometimes literally and other times figuratively) humbly presenting my requests to God. The first diagnosis that came was “epilepsy” and trying to control the seizures was a long, arduous process that was difficult to walk through. Here was my response to years of heartache with no reprieve in August of 2014:

Storms & Silence

Anger beats red and
A Bitter taste chokes my roots
Clawing for some help
My hands are dirty and I am raw
Grime clings beneath nail-beds
And soot stains the heart-lines
Hope has fled with my youth,
Sorrowed and soiled.
I can’t help him.
From where will help come?
I have lost my breath.
From where will his help come?
The fight’s gone from my bones
Worn, with an ache in my knees
From begging far too long.
Worry lurks behind me and a fear that is real
Steals my sleep and chases away peace.

Arms wide open with white knuckled fists
I lean into backbreaking winds.
once they slowed, I fell face down with nothing to resist.
I am hoarse from calling out to You.
I need water, my well is dry.
I watch. Wait.
Prayers carried by the wind
And dashed against rocks I can’t see.

I watch.
Arms wide open with white knuckled fists
I clench my eyes shut and bite down hard.
Straining to hear.
But the silence ensues, piercing me
And Ravaging him
No shelter from storms that seek to destroy
This small life, significant to ME
my prayers, love and patience poured out on its behalf…
is crumbling to ruins before my eyes.
Too many can’ts, numberless don’ts.
Isolating us each morning.
Where are Your promises? Where are your new mercies?
Why.

The second poem I wrote a few months after receiving the second diagnosis of Intellectual Disability (formerly known as mental retardation). While the people in our lives grieved, I found solace in having everything I already knew – validated. Finally. And with that validation came the help of school districts and more specialists. The best part? I could give myself a break, and lower my expectations of him and require the world around him to do the same. It gave us all more room to breathe. It saved our family and here was my response to the help after long years of searching and waiting in desperation for a breakthrough (August 2015):

above the clouds

In all this, I found that God is still the same. Even when it seems as though He does not hear and we are alone, we are not. And if I am angry, He can handle it if I pour it out to him. I cannot strive in Hope for a better future or relief or changed circumstances. Those kinds of hopeful prayers will be dashed. Instead, I must make God Himself my hope. He is with me, He is with my son. He is for me, He is for my son. God is enough and He does sustain, if I keep my head up and looking above the clouds…even while they block the sun.