What Our Comparison & Boasting Can Tell Them

Even though, afterwards, our deepest parts are often left feeling slimy and rotten comparison is so tempting, isn't it? It seems to attempt to invade every aspect of our lives - even if we try not to let on that it does. Whether in secret or sheer open defiance of the consequences, comparing ourselves; our marriages, motherhood, our jobs, our bodies, our children (oh man, the list is endless) seems like an ever returning rabbit trail of internal destruction - making gaping holes in our minds, spirits, hearts, relationships, and our children's perspective of themselves. Ahh, our children. There's even more at risk when comparing their lives to... anyone else. Comparing our children to others; their peers, our friends' children, their siblings, and even ourselves or "who they once were", just isn't wise, healthy, productive, or kind. Actually, in my opinion, neither is boasting... relentlessly. Sure, we absolutely should be proud of each of our children. I am definitely not saying we shouldn't be thrilled about what they are learning and share that excitement with others. We should share it and encourage our children in their achievements and challenges. But, we should be careful that our words don't convey to their little ears [hearts] that small things like at what age they could eat a pea (slight exaggeration) or say a two-syllable word (or their older milestones/accomplishments) should dictate their value or measure their abilities. Or, on the opposite side of things, because they walked/talked two months "late" (or in some cases - never do) they are somehow not as smart or amusing as the "advanced" ones.

Of course we don't intentionally say those things out right, but the fact remains that our negative and positive words EACH have both negative and positive implications on how our children view and value themselves, and how they perceive our opinion of them.

Our son was incredibly advanced (honestly, it blew us away) to the point of being considered a "savant/genius" by his medical team. Now, as a result of trauma to his brain from severe seizures and a possible genetic mutation, he is now considered to be "mildly mentally retarded". I can't lie that that was difficult news for us. But, I am so grateful that we never made a big deal about how "advanced" our son was because though he feels saddened and frustrated by the changes in his brain - he doesn't feel defeated or "less than" or like he's lost his identity. He's still Evod regardless of how his cognitive skills, milestones, and academic achievements "measure up". The fact is, his ability to love, be loved, and be a world changer isn't limited by earthly labels. His purpose isn't minimized. Period. And, shame on me if the temptation of comparison gets the better of me and causes him to ever think differently.

You see, just as he wasn't defined by the more favorable label, "savant/genius" he also isn't defined be the less favorable label “mildly mentally retarded”. Just the same, our daughter isn't defined by the milestones her body once achieved, but is no longer [seemingly] able to do because of Rett Syndrome.

Our children (ours and yours) are defined by so much more than what they can and can't do; physically, cognitively, emotionally, etc... As parents, may we not get distracted by comparison, jealousy, insecurities, and luring deceptions that make us feel like we and/or our children are somehow "better" or "less than". May we put temporary [worldly] standards on the back burner and choose to remember and, in turn, remind our children of the eternal gifts (though often mocked), genuine love (though often misconstrued), and world changing purposes (though seemingly less attractive) that are woven in them by their Creator. In spite of how "advanced" or "handicapped" our children may be, may our words reflect unconditional love, acceptance, grace, and pride beyond how our earthly selves, and those around us, tend to discern and label “success", "purpose", and "value".

   "I praise you, for I am fearfully and wonderfully made. Wonderful are your works, my soul knows it very well." - Psalm 139:14

Stigmas, Love, and Silence

I happen to be a married Christian woman who is the mama to four children. Not much sounds too unique, yet, right? Well, our two and a half year old has a serious genetic mutation (mecp2), lacks necessary coating on her DNA, and has Rett Syndrome (which is said to be like Parkinson's, Cerebral Palsy, Epilepsy and Autism in one diagnosis). And our eldest, almost eight years young, has Intractable Epilepsy and juvenile mental illness likened to Schizo-Affective Disorder. Okay, I realize this all sounds a bit boring - but I'm getting somewhere, trust me.

Before we were thrust, quite unexpectedly, into the world of mental illness I was undoubtedly naive and ignorant to this unique, complex, and chaotic world [of rare illnesses and mental illnesses]. I realize, though, that it's difficult for anyone to truly understand unless you're IN IT. It's easy, however, to have an opinion on what the problems are, especially when it comes to the mental health community; parenting, discipline, religion, medications/no meds/treatment in general, schooling, etc...  

I purposefully, and prayerfully, share "a lot" about our journey. Comparatively speaking, though, I only share a speck into what our world is really like. And honestly, through that, we have been blessed with support, prayer and people who lovingly try to understand. Still, I want to clarify some things.

When my mom had a massive heart attack, did anyone say, "All she needs is God and prayer; stop all meds, turn off the machines, discharge her from the hospital." No. No one said that. And, no one [usually] does in those cases. Why? Because there isn't such a massive stigma wrapped around heart disease. With mental illness, though, there is. Does our son need God and prayer? Absolutely! But, please don't over simplify this more than difficult and complex situation that we are living through. Furthermore, please don't insinuate such things like --- if Eric and I had anointed our children with oil (which we have and will continue to), like you did, our children would be fine [like yours]. Yeah, in my book - that's just wrong (i.e. you're wrong). Please, don't insinuate that, to anyone, regardless of their illness. People have been healed through prayer and anointing, but you cannot assume that our children would be fine if we basically followed your footsteps. Grace, compassion and... silence go a long way. 

I'm sorry, but why do some people act like every person in the Bible was healed and walked in fields of poppies with blue skies free of trials and suffering. Quite the contrary, actually. Even those with great faith suffered greatly. Oh, but didn't they just anoint each other with oil and tap into their faith so their suffering would end, free them from prison, prevent them from being beheaded or stoned? It doesn't work that way. Not then, not now. God is able but we can't dictate how our cries are heard and prayers are answered. It's called sovereignty. And, I'd rather not minimize prayer by equating it to my personal genie in a bottle in my time of need or want.

Now, if someone you care for was diagnosed with Alzheimer's, Dementia, Diabetes, Parkinson's, Cancer etc... would you minimize their illness and treatment to "it's all in their head", "they're demon possessed", "if they would just pray more", "they should stop all their medications and just have more faith"? I know some, unfortunately, do respond that way (I've experienced it personally and with my children), but I sure hope you wouldn't. Sure, spiritual oppression is legit and should be prayed about. But, that's not what I'm talking about here. I'm talking about the above quotes - those ways of thinking are hurtful and could be deadly for relatives and friends who are ill. And, believe it or not, this is very often true for mental illness, as well. 

Here's a quick Q&A to clarify a few more things: Do I believe that we have to be diligent, do research and pray about treatment plans; homeopathic and/or "western"? Yes. Are some medications dangerous and should be limited/ avoided? Of course. Are meds over prescribed? I tend to think so. Do I prefer less man made chemicals (or none) in our bodies? For sure. But have some been used to save lives and improve quality of life? Undoubtedly. 

Does God still answer prayer and heal today? Yes! Does He always choose to heal? No, and it is ridiculous to blame that on lack of faith on the part of an ill person. Someday you and I will die and it WILL be because a part of our body is sick, not functioning properly, got too old, or was badly hurt (organically, accidentally, in a criminal way). This is inevitable... and it WON'T be because of lack of faith but because this is a broken world and it isn't our Home. So, it bothers me when people speak proudly, blindly, and hypocritically when it comes to illnesses - specifically mental illness. Sure, I realize that people have good intentions (most of the time) but, it still stings and I find it my duty to protect and prepare my kids for such comments (and to share to help advocate and shed light on this touchy matter).

Like most people, I see a lot of posts slamming this, that, and the other - usually things that the people who are posting don't really understand (honestly, I can't say that I'm not guilty of that either- we're all curious people with an opinion). As of late, because of the horrific shooting in Charleston, those posts and comments have been about medications and mentally ill people. Actually, I agree with a lot that has been said - but not all of it. Our mental health system [and community] needs a lot of help; it's broken. And, no, I don't think more medications are the answer, and sadly, some add to the problem(s). However, we also can't solely blame the medications ignoring their importance (in a lot of cases).

You see, our son was VERY ill prior to meds (there are no words to describe it, really). And, sadly, he still is but his medications (though truly considered a double edged sword to us) are helping. At the same time, we have done our best to minimize the amount of meds he is on (we refuse to over medicate him causing him to be a robotic-sedated little boy deprived of his own personality), we involve various forms of therapies in his treatment plan as well as in our home, we pray with and for him every single day, we try to eat well and are aware of all the buzz in terms of our guts (we were even totally gluten free for over a year), we are trying essential oils and other homeopathic remedies, we have read and watched a TON on raw cannabis/ medical marijuana in regards to seizures, I nearly stalk his doctors via email (not literally, don't worry), we have lived separately for safety precautions and so our son could get treated at a residential hospital, he's required numerous hospitalizations at psych units as well as neurology units, we support him and do our best to research his illnesses to educate ourselves, we research meds and homeopathic treatment options, and researched where to uproot our family of six to live for the best care, we... the list goes on. I share all that because it's easy to point the finger at doctors/ meds/ parents/ "psycho" kids -  when, really, we never really see all that is going on behind the scenes... behind closed doors where things that I wish no one had to endure, were happening - even with great doctors, supportive parents, support groups, NAMI meetings, prayer after prayer, healthy eats, and limited medications.

The bottom line is we have (and love with all our hearts) a little boy who lives with auditory and visual psychosis, paranoid delusions, extreme anxiety, severe aggression, depression, insomnia, significant cognitive decline, daily seizures, being on the spectrum and more. Sadly, there isn't a clear cut, easy, cookie cutter treatment or prayer that is guaranteed to make our sweet boy free of those symptoms and the dangers that come with them. And to treat families, like ours, like there is a "clear cut, easy, cookie cutter treatment and prayer" as a guarantee "fix" for our illnesses and woes is so very blind... and hurtful. But, regardless of the mounting negative opinions and WITH the support of many who truly care, we are doing our best. And, we aren't the only family who is trying, with everything in us, in every hour of our day, with every speck of insight/wisdom/knowledge thrown our way, to do what's best by our ill child[ren] and family. 

With our broken, sometimes offended, uniquely blessed, beyond tired hearts our prayer is the same as if our children had more well known, less stigmatized, less abtract illnesses... may Jesus be seen as our strength, Anchor, and hope in our brokenness. Our gratitude still wells in us because His grace really does change everything. There is much uncertainty, blind judgement, hypocrisy, suffering (mentally and physically) but... such things won't last forever. As we endure, what many don't understand, I pray that more than even the world of mental illness many would come to understand, and know, the source and Giver of our living hope... such things truly endure.

May we choose to love out loud, walk in compassion, and share grace beyond the stigmas of mental illness, any illness for that matter.

 Otherwise, may we learn the power of silence.

Side Note: I was so passionate about writing this I couldn't wait to get onto a computer so I pecked it letter by letter on my phone, off and on, surrounded by my four children (lots of laughing, crying, diaper changes and other needs) - please pardon the abundance of typos and errors! I will try to get to editing them... in time. :)

#mentalillness #juvenilementalillness #rettsyndrome 
#hope #loveoutloud #christianslistenup #brokensystem

Out of the Dark Blue Sky

Sometimes it comes out of the blue like a shooting star in the middle of the vast night sky. Except, this isn't one of those more magical, wondrous moments. Instead, they are moments that often feel like I am free falling off the top of the moon; gaining speed while only losing control.

He's sick, in some abstract ways, and I hate those moments that feel like we are losing even more of him. Psychotic, delusional, and manic episodes can last for minutes, hours or days - or more. And, they have the ability to crush my heart without even laying a finger on it. Oh, how I often wish I could simply reach out my hand to my sweet boy and he would grip it, and I could just pull him back to us - pull him far away from all the internal dangers, fears, anxieties, pain, hallucinations and delusions that torment him. I wish, so badly, that I could go into his mind and battle those things that are invisible to me, for him; on his behalf. Ahh, but I can't. It's a hard thing to take sometimes isn't it - not being able to do the impossible. Though I can't do the impossible, I battle in ways that are absolutely powerful. I am unable to join our son in his broken brain, but I pray to the One who is more than able to do what I cannot.

Some days it's not only hard to see past the destruction that's surrounding us all, and sucking us in, but we also feel mute, like our son cannot hear our love and affections that we are trying our best to verbalize and articulate to his tender, delicate self. It hurts so badly to desperately try to offer and convey love and truth to our first born while it appears as though not a word of it penetrates his ears. But, beyond the hurt and dismay, I believe that the Holy Spirit, like the most timely and efficient postman, hand delivers our love from our lips and hearts straight to Evod's heart and soul. Ah, yes, I believe wholeheartedly that our God can do [is doing] the impossible. Even on days like today, that are hard, heavy and feel so overcast inside of us, I know God is moving in Evodence. And more important than even seeing our love, I know Evod sees his Redeemer's love reflecting like light in the darkness. Oh, let it be known - Mental Illness cannot limit God or vanquish His radiant power and light, in our son or anyone.

Truth. On some of the dark days, I have to purposefully remind myself of it too, as fear tries to not just creep in but smother my family. Juvenile Mental Illness; the symptoms of On-Set Schizophrenia/ Bipolar Disorder I (different than Bipolar II), Anxiety Disorder, etc... are scary. I can't deny it. But, just because something is scary doesn't mean we have to fear it! I know that might sound absurd and impossible, but it's neither of those things. By God's grace I don't have to fear our son's prognosis, symptoms, or future. Absolutely some days and moments seem so incredibly dark and hopeless but, thank God, things aren't always as they seem. Even in the pitch dark there is a light within us; guiding us and illuminating truth; lighting up Hope.

This morning drew so many tears out of me, and so many fears were being stirred in me, but as I sit here to write, surrender, and reflect - God, by His Spirit, is deeply encouraging me. I don't know what tomorrow, or the the next hour, holds. I absolutely cannot do the impossible. But, I wasn't ever meant to know everything or be able to do everything - even rescue my son from Mental Illness. Instead, in this hour and every single one that follows, regardless of how bright our dark, I am desperate for the One who does know everything and is, indeed, able. And, whose love for my sweet boy reaches beyond the stars - even beyond the magical and wondrous shooting ones.

                         In this, He is able. In our son, just as he is, God is able. In the darkness, He is light.

what the darkness that looms whispers about us

Many may never understand. Some might sling ignorant judgments around without a second thought. Others will choose to love blindly and beautifully; unconditionally. Juvenile Mental Illness is like a war persistently and relentlessly raging within the little body and mind stricken by it.  Oh, yes, "it" [everything that mental illness is...and isn't] has more than turned the world my family once knew completely upside down and flooded it with scenarios often too complex and painful to put words to. We grip onto Jesus' truths as it's the only anchor around us; within us. There is nothing that is easy, predictable, or firm on the ground anymore - besides Him.

My sweet boy, is tormented by mental illness and, really, I could never accurately convey to you just what that means or how it affects the rest of us. It's so hard to relay something so painfully abstract. Those well known physical illnesses? Yeah, they aren't alone in how grave and horrific they are. We might not hear about mental illness often, besides in jokes and glorified tragedies on the evening news, but mental illness symptoms, though often invisible, are just as real and agonizing. Oh, how many days and nights I've wished I could somehow join my sweet boy in the nightmare he endures, battles, in his mind. I wish I could cover him... hide him from all that taunts him. I wish I could undo the devastation of the symptoms of both Intractable Epilepsy and Juvenile Mental Illness.

Undo the devastation. Psychosis, depression, anxiety, paranoia, aggression and the like are legit symptoms that have filled and changed the rooms in our home, and in our beings. They are completely and utterly ugly - but they do not define our son. Our sweet boy is not ugly, weird, or a freak. He is sick with [mental] illness(es), secondary to severe Intractable Epilepsy and other abnormalities on his brain. This isn't his fault, and I cannot deny that some days I fear other's ignorance and hatred for things they simply do not understand.

I can't lie, it feels like mental illness has done a drive by robbery; leaving us stunned, violated, and trying to do an assessment of what's left of us. I still ache for what once was as I never got to properly say "goodbye". I never could have imagined what it's like to stay up with my son, night after night, because visual and audible hallucinations fill and frighten his little world. I don't think I somehow could have prepared myself for those moments he's unable to recognize our voices or our faces as his parents or to watch him frantically smacking the blankets and his body because "spiders are everywhere". Until you've experienced, first or second hand, psychosis disorders - you can't fully "get it". Trust me, I know. I never could have imagined this. I never could have grasped that such things existed in "normal families". You see, this isn't mere imagination gone wild or night terrors keeping him awake. This is sickness, in ways... at its worst. This isn't something I can make stop. Oh, how I wish I could.

I can't make it stop, but I know God is able. Yes, God and His Word can comfort and even heal our son completely. But let me just say this - we might be talking about mental illness here, and many consider it to be purely spiritual in nature, neglecting to acknowledge the legitimacy of brain/mental illnesses and labeling them as "lack of faith", "selfishness", or "sinful" without even taking a closer look into the reality of the situation. And, that's just foolish. I do believe that there is a spiritual side to everything, but there is also a physical - even when it comes to mental illness. You know, what makes our brain so different than our gut and heart or even our blood and lungs when it comes to illnesses? It's so easy to quickly clump disorders of the brain into its own freakishly strange and ultimately misunderstood category. It's easy to forget that God can heal our every headache, aunt who is dying of cancer, or the neighbor who has lupus - but He doesn't heal in every instance that we faithfully cry out for Him to. Yes, God can, but that doesn't mean that He will when we say He should - regardless of the type of illness we are facing. And, you know what? Just because God hasn't healed Evod of these sadly taboo illnesses, doesn't say anything negative about him; his life, his faith, his journey, his hope, his spirituality. And, neither does it say anything negative about others who battle, not only mental illness, but the stigmas around it. 

Our son, just barely seven years young, sometimes finds it hard to want to be here... on this earth, anymore. I can't explain that. It's so searing, literally torturous for my heart to take in. In those sobering moments when I hear him utter such things, I am quickly thrust into remembering just how terrifying and truly threatening mental illness can be. I cannot say it enough... this is real. And, Evod isn't the only child facing all that he is. Children suffering and battling like Evod might be hard to spot, because they often look so "normal". So, as I am writing this I am praying that these vulnerable details would be used to shed light on this painful subject and spur us on to walk in love, grace, and compassion - regardless of the behaviors, symptoms, secrets we see or don't see in those around us.

When we find out that someone is mentally ill, or has sadly committed suicide after battling various forms of mental illnesses, we tend to quickly allow those things to define them; their life, their legacy. And, forget about them, as being a fellow human. Yes, this is terrifyingly real, and even scary at times, but our sweet boy is very much still here in the midst of it all. His tender heart and creative mind absolutely still exist. He, the beautiful, bright, and brave boy that God created, should never be forgotten or minimized under any label. I am not embarrassed of Evod's illnesses, none of them, but this truth will always stand; they [his illnesses] do not define him. God does.

When it comes to each of our lives and our deaths - we all have mysteries, sins, illnesses, stories that desperately need God's grace and mercy. That truth ties us all together, even with the ones who seem so different and far away from us, the ones who suffer in the often elusive, invisible, complex, piercingly painful, shocking, isolating ways of mental illness.

We all have parts of our lives, our stories, that are dreadful and likely a bit of darkness looms around them. And if those parts of us could speak they would more than whisper our pure need for Jesus. The darkness, regardless of the shade, reveals the truth that we all have more in common than the hearts beating inside of our chests. The truth is, not one of us is better or less in need of grace and mercy than the other in spite of the details that seem to polarize us on this earth.


"...when his lamp shone upon my head, and by his light I walked through darkness..." - Job 29:3 

 "He is before all things, and in him all things hold together. And he is the head of the body, the church; he is the beginning and the firstborn from among the dead, so that in everything he might have the supremacy." - Colossians 1:17-18

"Life will be brighter than noonday, and darkness will become like morning." - Job 11:17

Like Rubies Adorning the Dry Winter Branches

It's like at the end of Winter when the seemingly dry branches are covered with tiny bright green specks; little signs of new life. What a gift to my eyes, even if just a glimmer of progress or a glimpse of beautiful things to come. Just the same, as new vibrant leaves are starting to form on early Spring branches after a long, cold Winter, I see God moving inside of our beautiful son. 

Mental Illness does not have the power to minimize our boy; his God given value, gifts, and life, in any way. And, neither can it reduce God's love and purpose in him. It is so true that I am honored to be Evod's mama through this, regardless of how excruciating our days can be, and it is a gift straight from God's heart to mine to allow me to see gems in the darkness.

Gems in the darkness? Yes, indeed. Some hours, even days.... days upon days sometimes, can seem and feel so very dark. There's no, foreseeable, way out. There's nothing I can do to make any of this better- to make my sweet boy better,  make the days easier for my girls, or to relieve the pressure on my husband's heart. But, so often, when my own heart feels like it's beating outside of my chest on the cold floor in front of me, because it needed to escape, I see it... a gem in the darkness. A glimpse of new life; fruit, evidence, work of God in my sweet boy. It might seem so small, or even unnoticeable to some people, but to me it's nothing short of a gem glistening in the dark - reflecting the light of the Son.

Often times in our emotional, physical, and spiritual brokenness God does wonders in us; refining, strengthening, and sanctifying us. Mental Illness might be mysterious but it's no different than any other type of brokenness or illness that our frail human bodies endure. It might be foolishly placed in the "taboo" category, but how humans might view such things, certainly does not limit God's power and refining love exposed mightily through them.

Psychosis (audible and visual hallucinations), suicidal ideation, great degrees of anxiety, manic/violent/aggressive episodes, rapid/unpredictable/intense mood swings, depression, etc... are all things that a lot of people seem to have a hard time acknowledging, accepting, understanding, verbalizing, or hearing about. I admit those things are nothing short of being mysterious, complex, sometimes scary, and hard to relate to (unless/until you've experienced it or witnessed it first hand), but I refuse to pretend as though those symptoms (yes, that's what they are) are any less in need of exposure, awareness, compassion, and prayer than any other, more "acceptable", illness. I refuse to turn away and pretend that this is not our precious boy's reality (and each of ours in this family).

Rather than hiding away or being silent about real issues, I believe that Evod is most blessed when our words, and our actions, convey to him that we love him, as he is, and that we trust God's plans for his life even if illness, of any kind, is apart of that life. If we ignore or deny mental illness for what it is, then we are choosing to reject and isolate our son. We won't do that. We won't because we love our son and we trust God's sovereignty, love and faithfulness in this... and in Evod.

Every day, I pray for eyes to see what He wants me to see; in those moments that might seem like the opposite of beautiful but there is indeed raw beauty to be had, in those hours that I feel like I am at a complete loss but really I am gaining so much as God is seeing us through in spite of Evod's illness and my weakness, those instances when suddenly I see his genuine smile for the first time in awhile or the sparkle in his eye that seemed to dim for too long, those nights when I can watch my sweet boy sleep and pray for him and trust that his Creator is indeed moving in and loving on him.

Oh, like the tiny fragrant blossoms that adorn branches in early Spring like rubies, regardless of the harsh Winter that seemed to linger too long, God continues to bless us with gems made of precious hope. God is near and He is our gem that adorns our every day, even when my human eyes, hands, and heart are blinded by the sting of this long night. My heart is grateful for such joyful truth... 

"Even there Your hand will lead me,

 And Your right hand will lay hold of me.

If I say, “Surely the darkness will overwhelm me,

And the light around me will be night,”

Even the darkness is not dark to You,

And the night is as bright as the day.

Darkness and light are alike to You.

For You formed my inward parts;

You wove me in my mother’s womb...

I will give thanks to You, for I am fearfully and wonderfully made;

Wonderful are Your works,

 And my soul knows it very well.

My frame was not hidden from You,

When I was made in secret,

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written

The days that were ordained for me,

When as yet there was not one of them.

How precious also are Your thoughts to me, O God!

How vast is the sum of them!

If I should count them, they would outnumber the sand.

When I awake, I am still with You."

-Psalm 139:10-18

(In the picture above, I am 6 months pregnant with Evod.)

Trading What I Knew For All Things New

It's like bidding farewell to a beloved season as the next approaches sooner than promised by the calendar or weather man. Like when the leaves changed colors too rapidly; from green to brown on the ground, and the vibrant hues of oranges and reds didn't last long enough and we are left with bare branches for miles and miles. Maybe the last of the snow melted before we created all the memories in it that we had anticipated; sledding, snow angels and snow ball fights, or the lilac blossoms' fragrant beauty was cut short by the harsh wind that cuts like prematurely wielded pruning scissors. Whatever the sudden switch up of seasons might be, we often just feel gypped. Why? Why can't our favorite season just last forever.... 

I have typed the words "mental illness" so much that parts of me have become numb to the letters that make up those words, while there are still parts of me in shock that I am even having to type them at all. This.... this wasn't in the calendar. This wasn't a part of the plan. Well, not my plan, anyway. 

My how I miss yesterday. By "yesterday" I mean, that last season of our lives where Intractable Epilepsy and Mental Illness didn't seem to daily rob my son and daughters, of the childhood I had envisioned and anticipated for them. This, none of it, incorporates naturally into my "to do" lists, calendars, plans. Mental Illness doesn't cooperate with my schedule, my wants, my hobbies, or my dreams. Seeing my eldest daughter with her knees to her chest, hands over her ears, and tears in her eyes because she just wants it all to be over, hearing my youngest  daughter (outside of the womb) scream because she is frightened, hearing/seeing/feeling my son seemingly coming unraveled in front of my own eyes, then  [at other just as sobering moments] trying to articulate what it's like to be him; live inside of his suffering and struggles- yeah, none of that fits into what I thought their lives were supposed to be. 

Today was hard. For a moment, Eric and I were at odds, at a loss, as sometimes this is just simply too painful, too confusing... too much. Once again my heart was crushed because it was absolutely impossible for me to make it all stop; make it all better for everyone. In the middle of Evod's episode I wanted to scream so incredibly loud. I wanted to throw something. I wanted to run out of my front door. I wanted to be out of this house and saturated by sunlight and fresh air. I wanted to breath. I wanted to snap my fingers and suddenly [peacefully] be with my family rolling down green hills, hiking in the mountain, having a water balloon fight, or even a picnic full of gluten and snacks I never buy. But I was here with my being, after a year and a half of this, still stunned by it all. My life felt so out of control, as it does every single day, and everything in me was resisting it. I just wanted yesterday back. 

But, alas... this is the new canvas that our lives are being painted upon by the hands of an Artist who happens to be our King, who is also our sovereign Lord. Parts of me wants to scream and resist and remove the words "mental illness" from my vocabulary. But, what good would that do? After all, to me, genuine hope and faith, and the supposed "power of positive thinking" are two very different things. I cannot ignore this and trust God at the same time. All of this, unless God chooses or until we are in Heaven, is not going away. Yes, I feel like God is wrecking my life. How dare He, right? Wrong. He gives and takes away... as He pleases; for His purposes, for His glory. Even in my utter brokenness, I am genuinely comforted by that. This life, as it is, has purpose and glory can come, and I pray IS coming, from these ashes like the grandest of all rainbows, earthly wonders, or songs whispered from our hearts. 

As God is wrecking the life that we once knew, I cannot lie or deny that my human hands sometimes cling to yesterday so tightly, and my heart pleads for God to let this cup pass from my son [my family]. But, even when I am blinded by my own tears, I am blessedly reassured by His faithfulness. I am continually reminded not just by what my eyes see, but what they often can't see, that He is near and making all things new, according to His plans. His beautiful plan. 

"He is before all things, and in him all things hold together." -Colossians 1:17

In

all

seasons

...

A Sister's Prayer

Nearly every night before bed Eric, all the kids, and I sit down on the couch or snuggle in one of the beds. We ask them what their least favorite part of the day was, their favorite part, something they learned, we talk a bit about what they had to say, then they choose someone to pray for. It helps us to stay connected, be real, and keep communications open. Before we could even start that routine the other night, Evod crashed on the couch. He had an especially rough day of violent, aggressive episodes and that always takes a lot out of him; emotionally and physically. 

When it came time for Avni to choose someone to pray for, she chose her brother. Her sweet little voice nearly whispered this prayer, "Dear Jesus, thank you for making Evod. Thank you that he is my brother. Please take his sickness and anger away. Please take his hitting away. Amen."

Eric and I looked up at each other; our hearts sunk and swelled both at the same time. We try to talk to Avnielle as much as possible about Evod; his sicknesses, his blessings, his hardships, and his gifts. She hears, sees, and endures a lot and I refuse to let her slip through the cracks as her little world has been rocked, just like the rest of us in this family. I took this opportunity to probe a bit more, to see how Avni was doing and processing everything around her. We talked about Evod being sick and that, though it's hard to understand, he doesn't mean what he's saying or doing, while in an episode. What he's saying isn't true, I know it's hard and I have to remind myself of that  as well, I told her. It is true that he is sick, but I reminded her that it still never okay for him to hit her or hurt her; physically or verbally. We want to assure her that we are here for her too, that we also haven't forgotten her either. 

She kind of interrupted me and, with her head hanging down, she said, "But... he wasn't always sick..... he wasn't always angry." Again, so many various emotions flooded my "mama heart". I, first off, was thankful that she remembered Evod before he was sick. Honestly, sometimes that is hard, but I don't want to let go of those memories. They help me to grow in compassion, grace, understanding and remember none of this is Evod's fault. If he had control - things wouldn't be like this. He loves us. He does.

I asked, "Avni, you remember when Evod wasn't sick?" She said, "Yes, before seizures and anger and hitting... he had long curly hair." Instantly, so many memories and pictures flooded my mind. I hugged her tight and said, "He sure did." I told her, "We have to remember, Avni. We have to pray for Evod and remember. We are so blessed that God chose him to be your brother, our son. And, we have to remember that Evod has the same kind heart and spirit. He loves us....we have to remember."

Honestly, right now, I have tears streaming down my face. I still miss parts of my boy. I miss him, so easily, trusting us; trusting our love and affections. I long for his old hugs. I yearn for his days to be "easy" again. Not so much for my sake, but for his own... for his sisters'. I know he's tired too. I want him to love life; his life, our life together.

Oh, this life. Sometimes it's so easy to get our gaze stuck on it. With tears still in my eyes, I am being reminded of eternity. This sting isn't forever. I pray that the ache that my sweet boy feels, the emotional/psychological/physical turmoil and challenges that he faces cause him to yearn for Jesus more and more. I pray that it continues to be used to grow compassion, empathy, and grace deep inside of him. I do, still, pray for this all to go away, but if it doesn't, if while on this earth, it never does, I trust  and cling to Jesus; His purposes, strength, grace, sovereignty, and love, in this... in our Evodence.

I know that just like the dark soil hidden inside the earth, compacted around roots that are connected to trunks and stems that lead to the beautiful, vibrant, blooms of Spring; Evod's ache isn't in vain. God is near to our son, even in this. I can't always see, but I trust. I hope. I remember.

I remember, cherish, and love Evod before this storm.

I remember, cherish, and love Evod in it, and always. 

I remember and love God before this confusing chaos and unrelenting roller coaster.

I remember and love God now... in it.

He is the same; yesterday, today, and always;

Able. 

Strong.

Near.

Faithful.
Unwavering. 

I remember.