...so loved.

Some days, guilt tries to suffocate me like a late freeze over a cherry blossom tree. Regrets and hopes race and swirl in my mind like a harsh and aggressive blizzard that no one could have predicted. Yesterday, I felt like I was being consumed by the cold, by the pain, but as I sat there crying harder than I have in months, maybe even years, there was a break in the storm clouds that filled my mind. It felt like God, once again, wrapped my heart in a down blanket as He covered my mind, my being in truth.

Oh, how I need His truth and pray that it would cling to me like my own skin. I cannot tell you what it's like to try, with all that I am, to convey love to an incredibly lovable boy who once could easily accept and process such things, but now, most of the time, feels rejected, unwanted, unloved- even in a room full of people who love him dearly. I fight, everyday, to show my heart to him, as best as I can, and most days I am faced with anger, confusion, and a great deal of dismay.

When you look at Evod, you might think he looks like every other kid you've seen at the playground and therefore is the same, but really that impression couldn't be farther from our reality. My sweet boy is hurting, as anxiety and fears so often overwhelm his beautiful mind. Playing, interacting... existing, simply aren't as effortless as it is for most of us, as they once were for him. His perception, thoughts, and perspective, behaviors and, on many levels, his personality have all been altered. I see him trying to combat between two "realities", battling inside of him, and fight for what is right and true, but in some moments, hours, days it's all just too much for him.

Some nights, while insomnia is like a burglar in my bedroom ripping off my sleep, I lie there and think of all the days that existed between August 8, 2007, the morning Evod was born, and Fall 2012, the season severe seizures began stealing parts of him. It's so easy to re-think every single hour that I had with him, to question so many things I said or didn't say, to wish I had loved differently. In many ways I often feel like I squandered five years with him. But, I didn't, and neither did God. I can't allow myself to get so self absorbed, in pain or regret, that I lose sight of God's purposes in this.

Honestly, I just miss...................................... my boy. Trust me, I realize it must seem so bizarre, and perhaps selfish and melodramatic to miss someone while they are standing right in front of you. But, please understand that just like Alzheimer's can steal parts of someone that we love and  have grown so very accustomed to, close to and fond of- Intractable Epilepsy, Autistic Spectrum Disorder, and Bipolar Disorder can be just as devastating. It's so complex and every hour I can list things that I missed, areas I messed up in, and things I learned the hard way, but I'm thankful to be able to learn with my sweet boy; we, our family, are in this together. I mourn what once was, but I am absolutely grateful that I have the opportunity to get to know, and love, new aspects of my sweet boy. He's here, things might be different, but he's still here.

I am so thankful for the breath that fills my son, for the hope that fills both of us because God is very much near. Regardless of what we feel, all that has or could change (that we desperately wish hadn't), or if we've been blindsided by a  storm, His goodness follows us there - in the middle of the storm, in the deepest valley, in our darkest night. He is near, this I know.

"The Lord is near to the brokenhearted; He rescues those whose spirits have been crushed."
-Psalm 34:18


 

Stages and Cages

The eyes of my life have seen so much, my skin and heart have felt things that are often written in the story lines of a Lifetime movie. There's no doubt that I have thick skin, I am used to chaos and pain, but nothing, that I have faced, compares to having to watch my son experience all that he is. Everyday, I realize how much I lack in my starring role, as "mama", in my son's life. I often feel like I am on a stage with a large audience watching, wide-eyed, as I slowly stutter and learn, line by line, my role in this life. Everyday I am brought to tears, and brought to my knees, as my son's days are like whirlwinds of truly contrasting conflicts and emotions. 

Is it possible to feel both agony and joy at the very same time? To fear and yet, also, hope for what could be? Some would say "no". They'd have to argue with all that has existed in me, at any given moment of any random part of my day, as I purpose to parent and keep up with a beautiful child with unique needs and perspectives. It's like my heart is a UFC cage and my emotions and thoughts go to battle (not necessarily against each other). Regardless of when or where the fight goes down, agony taps out and fear gets knocked out... and lies, non-threatening, on the cold mat beneath my feet. That's right, truth always wins. 

I might 'only' be a mom, but I don't have to fear battle or ever stand-by and let my son fend for himself, simply because I don't always understand him; what he is enduring, thinking, feeling, fighting or how he is responding to it all. When I stand alone, as a 5' 5'', 110 pound woman with mere "experience" on my side, I am weak, have little to offer my son, and defeat would be imminent. Oh, but I never stand alone and neither does my sweet boy. God is near and his strength  abides in us and His shield is like a fortress around us. I never, for one second, saw our lives changing so drastically and so quickly, but I don't have to fear the unknown because God has been faithfully preparing us for such a time as this. Even while I was in my mom's womb and my son was in mine, God was already teaching us and weaving wisdom into our souls (Psalm 51:6). 

So often in a day, I have to remind myself that God chose my womb for my son's life to begin. When I feel overwhelmed or dismayed (because trust me, I do) I can rest in God's faithfulness that is like a hammock holding my heart. I was chosen, hand-picked, to be my son's, my firstborn's, mom and God will never leave me high and dry, but continue teaching  me to be a shelter for my son. After all, all I can truly ever be is a shelter; "a place giving temporary protection." Yes, I will always, as long as I am on this earth, be there (as best I can), for my son, but I cannot expect more from myself than what I am able to give or be. Only God can be my son's haven; "a [permanent] place of safety or refuge". I can trust God to be all that I lack, all that I simply am not or could never be and because of that... I can breath and be filled, again, with great hope.  Regardless of what my sweet boy is facing, feeling, or contemplating or how "far away" he seems, I know that the same God who created him is still, very much, tending to him, holding his hand, and guiding him.

When I first believed and trusted in Jesus I didn't think anything could compare to such comfort, peace and relief. I was wrong, I wasn't a mom yet. The depth of my need for Jesus goes beyond my own salvation, goes deeper than anything I could possibly hope for myself. It's not only my son, Evod, who has been changed by Intractable Epilepsy, Autism Spectrum Disorder and Bipolar Disorder tendencies. Our entire family has been changed, and my heart surely has. Though the ache that I feel is hard to explain, I am far from being embarrassed of what has become of our lives. Fear and   embarrassment, I rebuke, and refuse to allow in our home. I embrace and love my sweet boy, exactly as he his. God is doing extraordinary things in Evod and I cherish, and so deeply value, all that he offers to my world... and, to yours. 

"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 
- 2 Corinthians 12:9

Beautiful Kaleidoscope

Invisible textures fill the air; surround every bite of food, cling to clothes, latch on to sounds and attach themselves, like blurry spots and bright lights to our eyes after staring at the sun for too long. Sometimes, going outside, to face even those so loved and held dear, is a daunting task needing prompting and encouraging words, softly spoken. Perhaps dressing in costume, walking in a certain rhythm, or simply avoiding eye contact might help the emotions that come with walking outside the front door, or even leaving the safe boundaries of a bedroom filled with organized messes and comforting books on CD, kept on repeat. 

There are days when anxiety fills the room or the playground, so fast, it replaces the air and suddenly there's resemblance to a fish outside of water; panic, fear, oversized insecurities, and extensive and pensive thoughts cause their hearts to rapidly pace like gills searching for water. Except they; the brilliant, brave and bright ones that I speak of, aren't fish unable to breath oxygen or aliens in a place they don't belong. Perhaps they live with Bipolar Disorder, Autism Spectrum Disorder, Anxiety Disorder, Dyslexia or Epilepsy (really, the list goes on) but they are humans, like you and I, with hearts of their own that break and can be warmed.

My son, just two months shy of turning six, lives in a world where empathy abounds in him, creativity drips from his words and flow from his crayons, and his opinions are always laid out on the table. He enjoys being engulfed in a world of Legos, drawings, or a game that allows him to create while at the same time... escape. During "good" hours, he isn't trapped by his own thoughts or taunted by pesky textures that exist in every room and hang on every wall, or even every word. There are hours that are truly delightful and make me think of resting, beside my boy, in a field of poppies; so peaceful and calm. Often though, a sudden and new wave of emotions come along, triggered by something usually invisible to my eyes, causing him to detach. In moments like those, I am physically close to him but I feel like he is a kite and his tail has slipped through my fingers, carried away by a quick gust of wind. Trust me, I run and I run trying to catch the end of that tail as it races away from me.

I watch him, aching to join him in the sky, even wishing I could transform into a rainbow that adorns whatever place he escapes to when sitting, playing, dancing, learning, or eating has simply become too much for him. I have found myself, at least, thankful when he seems to be frustration-free or more comfortable than perhaps this hour yesterday. Yes, I compare this hour to that hour, his worst rage to the ones that aren't so bad, and days that are less reminiscent of a roller coaster and more like those rides that drop straight down, without any warning, and stop before you even have time to gasp for air. I find myself so incredibly grateful for those comparisons and finding the little things that are better, even beautiful, in their own way. You know, it's kind of like I have picked up my own kaleidoscope, trying to see things the way my son does, so that I can grow in appreciation, compassion, understanding, patience and grace. Truth be told, there is no way I could possibly do him justice or even survive, for that matter, keeping those old eyes that I once looked at life through. 

Though every single day has its outright painful, incredibly trying, colorful explosions of emotions splattered all around me and I feel like I am trying to keep up, breath, and just do normal mom duties (that often pile and wait for me in every room), I am adjusting to all the newness and chaos that surrounds me. Ah, yes... adjusting while as I am trusting in the Lord. He sees all of these deep details that fill our lives and, goodness, He truly does provide an abundance of strength for the weary. I know that He not only offers all that we need, but He is all that we need. Oh, how such truth settles my every thought and brings me back to a genuine place of contentment, peace and hope... and suddenly the greatest joy, on this side of Heaven, fills me.

It is no exaggeration, when I say that God's joy thrives in me, but trust me when I say, that I have mourned the way things once were and the tear trails, down my cheeks, have never been so big. There are those nights, while I watch my sweet boy sleep, that I literally hope that my heart ached more than his did that day. I pray, over and over, for God to cover him and fill him completely, in every beautiful way mentioned in the Word. I long to go where I can't, reach to where my hands can never touch, to wipe the tears that go unseen. As I lie beside him, drenched in my own tears, I am always, always gently reminded of the One who is near. Able. Faithful. Sovereign. Good. Jesus, who once pulled me out of a pit many considered unreachable, is now tending to my family and guiding us through the fog. We don't have to strive to create happiness because joy absolutely still lives here; in us, hope is thriving and peace fills in the gaps and the cracks of our broken days... as if God leaves His fingerprints on our hearts and footprints through every room. Though, sometimes, I feel like everything we once knew has changed, I know that isn't true; God hasn't changed. Our love for our son hasn't changed... only grown. How blessed are we to have a beautiful, brave, and bright son... able feel in ways so tender and deep and offer so much to a world that too often is looked at in one light. After all, to me, he is a light.

 

When you look through a kaleidoscope, though sometimes hard to see, colorful things blend together and create such vibrant canvases for imaginations to be free. Even broken things look beautiful and pieces that would never fit, in the world as we normally see it, layer on top of one another and become something new. Abstract, puzzling, and as unique as the perspective, offered by the kaleidoscope, might be, there are eyes behind each looking glass that are attached to a body that lives, feels, breaths, hopes and dreams... just like you and me. Just, perhaps, a little differently.