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. 

i am not a rescuer.

She's a stranger to me, but I am well acquainted with her pain. This mom was being interviewed on CNN, and ironically she's from Albuquerque. Her five year old son is suicidal - he suffers from mental illness. With tears in her eyes she expressed how helpless she feels, scared that her son will take his life while she is sleeping at night. Her last sentence in the clip was, "There needs to be more awareness."

I never thought that I would be able to relate to a mom articulating such words; words that we would never naturally put together 'child' and 'suicidal'. For us, it started off with us being scared because of the severity of Evod's seizures, especially the nocturnal episodes, as nocturnal seizures are the most fatal. We put a camera in his room to watch him as carefully as we could. We were desperate to protect our boy. My eyes rarely left that screen. Even if I heard a yawn or saw his arms stretch, I would bolt down the hallway to his room. I would lay beside him, stare at him, pray for him, hope for him, cry for him. I would wish that I could take the seizures, head on, face to face, and fight for my son; his beautiful little life. Alas, that's not the nature of this fight.

Before we could wrap our brains and hearts around how physically ill our son suddenly became, we started seeing serious signs of mental illness, due to trauma to his brain as a result of having 30-50 seizures a day). Our son, at age five wanted to die, wanted to never be seen again, wanted to disappear. One day, his eyes seemed so distant and he was pretending to write in a notebook. I sat beside him on his bed, knowing something was wrong and asked him what he was writing. At first, he said, "I'm writing good things." I just sat and looked at him, then he said, "I want to disappear. Go away, and never come back." He continued to candidly share some very dark thoughts that were racing through his mind, thoughts that were terrorizing him. Honestly, in that moment  (and since) they were terrorizing me too, but I had to be aware of my reaction. I had to be strong, he had to know that I could handle what he was courageously sharing with me. He, like the bright boy that he is, was trying to cope and express himself in a little notebook. He couldn't even write yet, they were mere scribbles, and yet his scribbles wrote such agony on my heart; quite legibly.

We were thrust in this new, chaotic, terribly painful world of mental illness. The week of his sixth birthday he ultimately had to be committed into a pediatric mental institution, for his own protection. When those doctors and nurses looked at me, I am certain they saw a gutted heart bleeding on the floor. Well, that's how I felt anyway.

How could I protect my son now? I couldn't watch him on the camera. I couldn't sleep next to him. I couldn't run down the hallway just to make sure he was still breathing. I couldn't hold him and at least pretend that I could protect him. We were only able to visit once a day, two times on the weekend. When we would visit him, we would have to be searched and wanded by security and sign in a log book. Evod was the youngest child there, but he wasn't the only one. And, yet, there was never a line of parents, or loved ones, waiting to go visit their children. In fact, there had been days and days between visits for many of them. I'm not claiming to know the reasons for the lack of visits for these children, but I am claiming that it saddened me. I wished that I could transform into someone special coming to visit each of them. Of course, once we were there, we could hardly even look in their direction as to not cause a stir. Ugh... I just wanted to hug and hold each of them. I wanted to rescue each of the children in that psych unit... including my son. I couldn't.

I am not a rescuer. I am a mom with a broken heart and with the ache that lingers in me a fire is stirring! I want to bring awareness to Juvenile Mental Illness. These children face extreme anxiety, paranoia, psychosis (audible and visual hallucinations), they have tormenting suicidal and homicidal thoughts.... they also have hearts. Just like a child who suffers from Cancer, that child doesn't want to be sick, and face the horrible symptoms of the illness, or be in a fight for his/her life. Children with mental illness - didn't choose to be sick. They didn't choose to have the symptoms, of mental illness, that haunt them and often isolate them.

I may not be able to protect and rescue as I wish I could, but I have a purpose in this. It is not by accident or mistake that we are where we are. It's not a mistake that I have walked, bright eyed and heavy hearted, into a pediatric psych unit or that my ears have heard the horrors, first hand, of mental illness. I think a part of my purpose, is my weakness in a world of such mystery and often invisible pain. I cannot walk into a room full of parents who have children with mental illness, strong and confident in myself or my parenting skills, but I can share the strength and hope that has been given to me, in these... the weakest, most broken days of my life. I am continually reminded that I am unable to be all that my child needs, and that's okay. Even in this, I wasn't created to be anyone's all in all, not even my mentally ill son's. I am not a rescuer. That's simply not under the duties, gifts, and responsibilities of "mama"... and I can't force it to be. I am mama, I am not God.

I know I've said it before; our six year old son look totally and completely "normal". When people look at him at church/ playgrounds/ stores no one would ever guess that he suffers the way(s) that he does. The fact that my son doesn't often look "ill" has humbled me... all of this has humbled me to the ground. Look, regardless of what we think we know about parenting, rearing children, being a Christian, being a human - we just never know what's going on under the skin that someone is walking in. From this mama's heart, who has limited control in this chaotic world of mine, I ask... may we purpose to err on the side of grace, compassion, and love?

After I watched the mom's CNN interview, on YouTube, I read the comments below it. One of them read, "shudve aborted the lil tard ". We cannot be surprised that there are people out there that view ill children this way, but we can purpose to love more loudly to make up for the abundance of hate and void of love that exists in such hurtful voices.

I am not a rescuer, but I am a mama... and I pray that I love well, and loudly.

Spreading awareness for Juvenile Mental Illness; may we first be aware that everyone has a heart, may we live and love accordingly.

Please join me in praying for the mom, and family, in the CNN interview, all the children currently committed to a pediatric mental institution, and the families living their lives around us that are, maybe even secretly, affected my mental illness.