2.04.2019

moments

4:30 am.


Tonic clonic seizure.


I sleep.


Jonathan lets me.


Tobin wakes.


For all the ways he drives me bonkers, crumbs everywhere, bathroom messes, stinky shoes, for all the ways, he is always the first to wake and be there to help through the seizures.


The boy whose fear used to make him run during thunderstorms now stays, calm and present through his brother's, no matter the hour.


A minute and a half.


An eternity.


The seizure releases.


Trevor's body is ravaged.


Along with the hearts of his brother and father.


He's exhausted.


His sleep is restless.


A curse of seizures, being so very tired yet unable to find peace in rest.


I wake.


My first stop is coffee.


My second the couch and laptop.


Though I peeked at them on my way by, I am yet ignorant.


Jonathan finds me.


His sigh tells me everything.


Sadness etched on his face.


He gives me details.


Seizure Tracker is updated.


Trevor finally wakes.


He climbs in my lap.


Wraps his arms around my neck.


Delicious.


I hug him like it might be our last.


Because it always might be our last.


He's so tired.


Scrambled thoughts.


The idea of school laying before him is distressing.


He can't remember.


What do we do first?


What do we do last?


He doesn't know why he doesn't know.


He says he should know, but he doesn't.


You had a big seizure, Love.


I tell him we can do nothing but rest today.


This doesn't sit well.


He must live by his schedule.


Or at least the idea of it.


Knowing what comes next brings him peace.


Security.


So, I reassure him.


We'll take it slow today, Love.


Help me make your schedule.


Bible first.


Always.


He wants to start now.


It's only 7 am, but I agree.


He runs to grab his book.


We do his lesson together.


Isaiah 41:10.


When it's over, he's restless again.


Unsettled.


So tired.


I encourage him to lay down and rest.


His body still won't let him.


Pacing.


Fretting.


Tired.


Always so tired.


Eventually, he does snuggle down with his iPad.


It's 7:40.


He's been there for nearly an hour.


If his body and mind allow, he might spend the day in bed.


This is epilepsy.


We are so grateful for the decrease in seizures Nemechek Protocol has given us.


But grateful isn't optimism.


We cannot be optimists.


We know too much about this disease.


He is palliative.


We know too much about this world.


It is broken.


Too much about the next.


Healing is waiting.


So we remain grateful.


Always our eyes are drawn to the horizon where everlasting hope and full healing gleams in the distance.

12.28.2018

like a magnet

I've heard it said that being a mom shouldn't define me. 


The longer I work at this calling of motherhood, the less I agree with that opinion. While I am more than a mother, the fact that I am a mother has served to change me so truly that I am wholly altered. Mothering fills my thoughts, my moments, my days. Motherhood has changed the shape of my physical body and my soul. The deepest layers of my heart are defined by this blessed gift of motherhood. 


Motherhood plays a profound role in my friendships. The closeness of my heart to the hearts of others directly hinges on their relationship with my children. 


The truth of this as it relates to Trevor is especially significant. I know it makes people cringe when praise is given to those that do something kind for disabled kids (and adults). I agree that kindness should be the rule. Period. I also know that to engage with Trevor requires more work than it does to engage with myself or my other children. He has yet to grow past the "me-first" developmental phase. His speech is limited. His interests more so. Friendship, on the surface, feels very one-sided. I make a note of "on the surface" because I've experienced how beautiful and generous a deep relationship with him is. He gives far more than he takes. He has not one drop of guile. He will never maliciously gossip about you. He isn't easily offended and is abundantly forgiving. His friendship is the truest. 


In social situations his anxiety steals his words and works on his physical body like a magnet turned the wrong way so that it's repelling, pushing, rather than drawing in. In social situations you'll find him pacing, flapping, avoiding. It takes observation to realize that he is simply a magnet that needs to be approached from a different angel. He wants to be drawn in, even if his body language has a repelling expression. He craves relationship. His disability is a barrier. I, as his mother, expend so much energy to bridge and help foster meaningful encounters. I wish I could say different, but most often we meet with disappointment. A fleeting greeting and nothing more. My heart aches for him. My heart aches for our family. My heart aches for me. We do meet with the occasional "unicorn" which serves to heal some of those achings. Thank God for the unicorns.


I am so defined by being his mother that I am physically fatigued, feeling like I was hit by a truck, after we endure (and I DO mean endure) social situations be they church, home-school related, or in the community at large. On a practical level, it is draining just keeping him safe. But there is a weightier emotional fatigue when I'm forced, because I don't have the luxury of averting my eyes, to watch how his disability isolates him and by extension the rest of us.


We were with a group of friends, kids and parents, recently. Some of the kids know and are friendly with Bristel. I watched as the children parted company in their little groups, as children are wont to do. The only child not in a group was Trevor. I said nothing aloud, but oh my heart did ache. While inclusion flows from the heart, it can also be encouraged and taught. I wished on every red leaf that one of the other parents would notice and encourage their child to include Trevor; to draw him in. I determined to praise them like crazy if they did. It never happened and I didn't have the energy to be a bridge that day. Sadly, he is accustomed to being alone and as usual sought his companionship needs from me. I don't think it ever crossed his mind to feel excluded. But he was. After awhile his sister noticed and left her group to join him. I watched as she and Trevor walked along; just the two of them. Her friends did not enter his world with her. They simply carried on with their laughing and chatting as they were. It revealed the depth of their friendship. Oh how I wished they'd come alongside her on this painful journey of his, which is also ours. Watching how his disability isolated the both them was achingly moving. 


So moving that it's been simmering in my soul for weeks now. 


Which led to a two-fold epiphany of sorts in the middle of the night. 


One. I will never, ever have any sort of meaningful relationship with someone who doesn't have an intentional relationship with him. 


Two. My heart will always expand towards those making an honest effort, no matter how awkwards or bumbling, to love and truly include him, which by extension draws all of us in. Like a magnet turned the right way. 

12.21.2018

not letting go hands

People hold dear strong opinions about so very many things. What it takes to have a good marriage, for instance. 


Date nights are a NEED. 
Sleeping in the same bed is NECESSARY. 
Speaking of beds, your bedroom HAS to be a child-free sanctuary. 
Romantic get-aways are a MUST.  
NEVER, ever forget it's your anniversary. 


Just a few strong opinions we've heard over the years. None of this counsel is bad; nor is it necessary.


Jonathan and I rarely have a date night. In the past six months, we've been dinner alone twice. Both times were spontaneous, stars aligning (which is to say, Grams' volunteering) moments. By the end of the day I'm usually too exhausted to go anywhere that isn't tempurpedic anyway. Also, it's hard to find qualified care-givers. Even more difficult is leaving your child behind when they are having frequent seizures, some of which involve turning blue from lack of oxygen. It's not as if we can say, "Now, Trevy, don't you go having any of those blue seizures while Mommy and Daddy are out alone. You know we need a date night to have a happy marriage." 


His seizures and related disabilities have prevented us from sleeping in the same bed for years. We have learned that it is the sleep which is essential, less the where or the how. Before epilepsy, I did the bulk of the night care for our children and we still managed to share a bedroom. Then seizures entered our home, and with them sleep disruption beyond what the parenting books prepare you to endure. I began sleeping with the other children so I'd have emotional and physical stamina to gut it through the next day. Jonathan has always been able to fall asleep more easily than have I. He would wake and care for Trevor through clusters of seizures when he was little, little. After surgery, the seizures were no longer the problem but, oh my word, caring for him during the day was more draining than I can even wrap words around. Nor will I try, lest I discourage others from pursuing surgical intervention. Anyone who has survived the forced normalization stage of recovery (which lasts years) understands exactly what I mean. Jonathan's snoring and restless legs stole my sleep unless we were separate. Now that Trevor's seizures have relapsed and the most serious seem to occur in the middle of the night, Trevor sleeps with Jonathan. My bed is near enough that he can wake me if they last over a minute. This has been the case several nights this month. 


The idea of keeping our bedroom a sanctuary is a sad comedy. Epilepsy is no respecter of  wall, physical or imaginary. Even were he not allowed access to our room, the calls for help would inevitably breech the barrier and we'd go rushing from our sanctuary to rescue our son. At times our bed has been the nearest when he's required a postictal rest. There is no sanctuary from his diagnosis. 


It has been over eleven years since we've been away alone.


This morning, while we were enjoying Trevor's mandatory "in bed til' seven" hour, sipping coffee and chatting, my brother-in-law sent us a "Happy Anniversary" message. Though we knew it was coming, still the day sneaked up on us, and was in danger of passing unnoticed had we not been reminded. 


Reminded that today, in spite of all our marriage faux pas, we've managed to make it 19 years together. Not only have we made it 19 years, he is still the only man I'd want to walk through this journey beside. The meaningfulness is not in celebrating a singular day as much as it's found in not letting go hands in the day-by-day journey though whatever life may bring. I told him this morning that caring for Trevor during the nights is far more important to me than a romantic get-away. Not that it wouldn't be nice. Of course it would. But I am standing here 19 years later, still holding his hand, to speak into the hearts of others whose path has led through the kind of suffering that blows up preconceptions - it is not a need. 


Humility
Compassion
Selfless serving
Forgiveness
Grace
Faithfulness of heart and mind
Grit


These are needs for a lasting marriage. 


I am so grateful for this life we've lived together. We were very young when we said our "I do"s. We've grown up together. We've had an incredibly adventurous life which has included much suffering. But oh how the hard times have drawn and knit our hearts more tightly together. 


I'm planning to make spaghetti and meatballs for dinner. It's his favorite. He's intending to let me go to bed early; which is mine. 


In the morning, we'll wake and grab each other's hands and walk through another day together.