We could be heroes

I'm going to say something here that is hard to utter out loud. I have lived more than a majority of my life resisting God's promises to me. You know what? That is actually putting how I felt about God mildly. I carried an almost hatred for Him. A disbelief in who and what He stood for. I couldn't wrap my head around being loved so much that He would sacrifice His only Son so that I could be forgiven. I also couldn't understand how He could leave this little girl inside so alone to experience things no child should ever see. We'll have to come back to that later because I am just not ready to be THAT real with y'all just yet. I'm praying about it though.

I'll start to share the story with you good people what turned me away from His unending love and merciful grace the most. He entrusted me to take care of the most beautiful blonde-haired, blue-eyed baby I had ever seen. I know you're wondering how such a blessing could be something to make me shun God. Let me tell you why. When that precious baby was placed in my arms, my entire world shifted. I hadn't felt good enough my entire life. When I looked into those big bright doe eyes of hers, I felt a renewed sense of self. I was someone's mommy. I had been given the gift of showing and teaching her how to make it in what had always been a cold, hard world for me. I most certainly did not have the tools or the prior preparation to be anyone's mother. All I knew was that I loved this tiny human being more than myself or anyone else and I had a very important job ahead of me, to be her hero. That's right, her hero. I knew I had to show up for her every single day, pay attention, set limits for her, and always know when and how to do the right thing. I just scoffed at that last statement. I really thought that. I was convinced I had to always know what was right for her. What could possibly make me think I could do that when I didn't even know what was right for me, like ever? I couldn't even make the proper choices in who I was growing relationships with within my own life and I expected to know how to make every move in the best interest of this tiny innocent life. I put an immense amount of pressure on myself for sure.

I had distanced myself from the light of the Lord not long after I was saved and baptized in high school. I still loved and believed in Him, but I wanted to live MY way, because honestly, His way just wasn't any fun and it was HARD. I had enough of hard in my life. I just wanted things to be easy. In making that choice, I actually made things a whole lot more difficult for myself. The gap I had formed grew even wider not long after I realized my Kayleigh was not well. The day I had a pediatric neurosurgeon, who really needed to be retrained in Bedside Manner 101, inform me that my one and a half year old was going to have to have a decompression of the skull (brain surgery y'all, my little light was going to have to have brain surgery), that was the icing on the cake for me. God? Who was God? He certainly didn't exist in this space with us currently. How could He let this happen? Hadn't I been through enough? How could you give me this incredible gift in human form and then make it to where I stood the chance of losing her? I didn't feel much like her hero. I couldn't save her from this. 

There are a lot of details I have to spare you here. If I let you explore every single facet of her life, this blog would go on for days and I would lose you in the abyss of her story. Let me explain the hatred I grew to have in my faith. As I sat in the little room they put you in when your loved one might not make it through an extensive surgery, I laid on a couch right beside a phone that would connect me with a voice on the inside to let me know whether or not my baby was going to make it. I buried my face in her crib blanket, inhaling her sweet scent, closing my eyes and imagining she was still wrapped up in that blanket and vowing that if I could hold her just one more time, I would never let her go and I would redefine what being her hero was. I would be bigger and better for her. This is coming from what was then an almost 23 year old who honestly was still lost in the clutches of becoming an adult, whatever that is. I am still struggling with what being an adult is all about and I'm not a big fan if we're being honest here. All I knew back then was how much I needed the life that came from me to remain here on this earth. I needed Kayleigh. She was the only good thing I felt I had ever experienced. She taught me how to truly love and I hadn't even begun to be a glimmer of her hero yet, but she was quickly becoming mine. It started there. I was more than angry at God. The memories of my life before Kayleigh came flooding back and as I waited to hear the outcome of my child's first brain surgery, I did not feel His arms wrapped around me. I felt I was destined to live in misery, that it would always be one thing after another and I didn't want a God who constantly let me suffer in my life. Little did I know He was showing me every single day how immense His love for me was and for Baby Kayleigh (I've called her that since birth and still do).

That baby made it y'all! She came back to me just as pretty and perfect as she was before. I gave no glory to God for it. I just poured my heart into loving her and researching the diagnosis we had received. Years passed and she kept fighting battles ranging from learning to walk with orthopedic braces on her legs to countless sessions of physical and occupational therapy and episodes of cyclic vomiting. As we often do, I got a little too comfortable in living in our "normal" lives, which were anything BUT normal. To us, normal was not having to spend countless days in the emergency room or intensive care unit. Normal was not having my baby's head cracked open and rummaged around in. I was just thankful for those small favors wherever we could get them. Our normal turned into dealing with her seizure-like episodes at home because the methods used to treat her when we took her to the hospital didn't seem to make any impact and we learned to deal with them as best we could. Plus, we were running out of resources to compensate for said treatment. I continued to blame God and convinced myself that me and my Kayleigh didn't need Him or anyone else for that matter. We would be a hero for each other.

Then one day, it struck again, the "it" that was destroying the inside of the way her brain works. I will continue to refer to this as "it" because we still have no clue what it really is. Her diagnoses include Arnold Chiari malformation as well as bipolar disorder, but neither mean a whole lot to me anymore. The challenges she endures these days have become almost unexplainable. Every door I have tried to open for her has been shut right in her face. She received another brain surgery at eight years of age, this time, opening up her skull to perform tissue grafts in the dura mater (a thick membrane that protects the brain and spinal cord). Prior to this surgery, I almost lost her. Kayleigh had gone into a convulsive state that led her to unconsciousness. When I finally got to her at daycare, her skin was translucent and I could prominently see the blue-violet of her veins. Her nail beds and her eyelids were also a horrific shade of purple and she had foam like a rabid dog coming out of her mouth. Her blood pressure and body temperature had dropped dangerously low and nothing that was done was elevating either. After her surgery, Kayleigh continued to struggle, both in school and at home. She doesn't learn at the self-contained level, but her ability isn't measured at your normal student standard either. She fits in the grey area that our school system just isn't currently able to cater to. At home, her behaviors have gotten increasingly worse over the years. I've had the police in my home more times than I can count and have sat with Kayleigh in the emergency room with a 10-13 status on more than one occasion. For those of you not familiar with that code; it means she threatened or attempted to commit suicide and she is a danger to herself or others in that current state. I have failed to be the hero I vowed I would be to her. The "it" just won't let me.

Whew, this has turned out to be quite a long blog. Sorry about that. Making up for not posting one yesterday I guess. I can't commit to conveying my message to you guys every day like I want to. I can barely commit to putting on makeup and existing in the outside world lately. That's real talk. My child is getting lost in what has become a very broken system. She is set to come home to me tomorrow and I know you think I should be happy about that. The mother in me wants nothing more than to wrap her up in my arms and put a band-aid on all of the cuts and bruises that torture her on the inside. That's what mental illness looks like to me, a million cuts and bruises that never heal and cannot be seen. She's coming home to me after trying to take her life last Monday. She is coming home completely and utterly unstable, but "stable" according to the current crisis stabilization facility she was admitted to. This is her fourth stay in one of these facilities in the past year and a half. She was just in one last month for 21 days. TWENTY-ONE DAYS. She came out even worse than when she went in and tried to follow through with her plan to commit suicide and almost succeeded, not even three weeks after being discharged. I have tried relentlessly to get her into a residential treatment program, appealing even after she was denied, only for her to be rejected again. Our government has pulled tax dollars from mental health care and the agencies who can help are not adequately staffed or equipped to follow protocol and procedure any longer. Mental illness is a cancer that eats away from the inside out. It is a slow, agonizing death if left untreated. Mark my words, if you think things are bad now with school shootings and walkouts, we are all in for a real culture shock coming up on the horizon. One in five teens is walking around right now with an undiagnosed mental health illness. I want to close by telling you my faith is as strong as it ever was and it is ONLY by God's grace my child is still here and that I am still standing upright, sort of. Today I am not feeling so tall, weighed down by a heavy sense of defeat. I will keep pushing though, marching on. I am my child's only advocate, her hero to the best of my ability, but I am losing her and there doesn't seem to be a sense of urgency for anyone but me. 

I just want to say this, we can all be heroes and that doesn't mean we have to save someone from a burning building. Maybe it does though, metaphorically speaking. Standing up for what you believe in, whatever it is that you are passionate about, using your voice as a vehicle to wake people up. Be a catalyst for change. I think those things are just as important as saving anyone in a physical sense. Kayleigh is my hero, she saved me when she was born and she saves me now. She is my reason why. Of course, Jesus is my ultimate savior, but He works through her to show me how much He adores me and that I am favored in His eyes.

Constant Kindness Can Accomplish Much

Heroes - David Bowie