Today my positivity meter has busted.Seth never did return to his 5th-grade classroom.
Today I can count on one finger the number of people who understand the special new kind of autism hell we are in.
Today [the day after Easter] I realized my kids' Easter basket contents are still in a Meijer bag in my room, and I busted out bawling for a whole new reason.
Today I don't know how I am ever going to get my 11-year-old through the front doors of his school again to graduate elementary school.
Today I want to kick dogs and punch babies and spit on nice old people.
Today I am uglier than I've ever been in my whole life.
Today I want to curse God for laying one. more. thing. onto my plate.
Today I don't feel like I have a friend in the whole galaxy.
Today - I have no idea how I'm going to do this again tomorrow.
Autism won.
Brain cancer won.
Then in the first week of August, after four months of therapy and having wrestled with the Autism demons trying to sabotage Seth's ability to process the tragedy we were facing with my dad, we thought we were ready for the first day of 6th grade. But at drop-off that morning, he literally ran after my car like a dog who had been dumped on the side of a country road - crying and pleading for me not to leave him there.
Autism won - again.
Just a few hours later while I was coming increasingly unglued at the seams wondering what in the world we were going to do now about Seth and school, I watched Dad being loaded into an ambulance and leave his home for - what I didn't know at that moment - would be the last time. I took a picture as I sat in the driveway waiting to follow the ambulance.
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| August 4, 2014 |
To this day, I don’t know why I wanted to capture that moment.
He was only being transported to the hospital for doctors to find some way to relieve his leg pain from the torn meniscus that had become so great that he couldn’t walk on it - not for symptoms from the tumors, which numbered over ten by that point. We would learn all too soon that sepsis had begun its dissemination within by dad’s immune-compromised body from the leg injury, and that his ascent to heaven was imminent rather than at some fuzzy point in the not-so-distant future that none of us wanted to try to bring into focus.
Brain cancer won - again.
And so began the worst week of my life. I was forced to find, research, and choose a completely new school for my autistic son while living Dad’s last precious days with us this side of heaven in a hospital room - literally faced with making life-impacting as well as death decisions all at the same time for two of the people I loved most on this planet - one who raised me, and one I was trying to raise. I was not allowed to focus 100% of my mental and emotional capacity on either one, for God had dropped them both on me to deal with simultaneously. I thought I had asked God all the “why” questions surrounding our family’s situation to that point, but I was wrong. Dead wrong.
The months following that week, as well as the last year in general, have been the most difficult of my 44 years - as a daughter, a sister, wife, friend, and as a mother. Going through the grief process after losing someone so close - so dear, I am learning, is nothing short of inexplicable on a daily basis - sometimes on an hourly basis. Trying to unravel how the grief process is also affecting your child whose brain is wired quite differently and can be knocked off course by his clothes not feeling right or the sun in his eyes is . . . life-squashing. You suddenly want to throw bricks at people who complain about normal, everyday parenting woes.
Actually, as a special-needs parent, you often already want to throw bricks at those parents of neurotypical kids who never have such issues to live with and squawk about mundane, fixable matters. So this is actually a whole other level of wanting to throw bricks at people who don't appreciate what they *don't* have to deal with. Maybe swing socks full of quarters at them. Or just send your child to live with them for a day. That would do it, too.
But I digress.
It's been a year since I wrote that post. A year of surviving . . . a lot. A year of living a little more and dying a little less every day.
One year later - and this morning, I dropped Seth off at middle school for the first time since that horrible day at the beginning of the worst week of my life.
One year later - he trots out of the car and happily walks into the school chatting with friends.
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| I did it! |
Today ...Today my positivity meter has busted. This still happens. Let's face it - that's life.
Today I can count on one finger the number of people who understand the special new kind of autism hell we are in. This is still relatively true, but I have a wonderful support system.
Today [the day after Easter] I realized my kids' Easter basket contents are still in a Meijer bag in my room and I busted out bawling for a whole new reason. Well, this is kind of a Holly thing. But I'm back to feeling relatively okay with the unintentional parenting shenanigans I end up pulling on a weekly basis.
Today I don't know how I am ever going to get my 11-year-old through the front doors of his school again to graduate elementary school. I never did. He had to live through and experience the tornado of emotions that continues to pound him, just to a lesser extent each day, and be ready to move forward on his own terms. He learned how to fail at something and muster the courage to not dwell in that spot, but get up and try something new; and I learned that I can no longer shield him from life itself. He learned that he is bigger than Autism; and I learned that I am not. In fact, it's not about me much anymore at all. I toiled away from the time he was diagnosed at 2.5 years old being a 24/7 multi-faceted therapist when his actual therapists weren't with him; and now at 12, all of everything we all did for him and with him is coming to fruition in the form of him processing and figuring things out on his own and being able to recognize when he can't. And I have learned more and more to let him.
Today I want to kick dogs and punch babies and spit on nice old people. It really was that bad - many, many days in the last year. But thanks to prayer and support and good friends and therapy and time, I can say I haven't felt that strongly about what I'm going through for - well - at least a few weeks.
Today I am uglier than I've ever been in my whole life. Things got much worse before they got better, but I'm coming around to the other side of the mountain now.
Today I want to curse God for laying one. more. thing. onto my plate. This is an emotion that, I'm not at all too proud to admit, can be recurring when you have the underlying responsibility of special-needs children of any level. Putting anything on top of that can be overwhelming and steer you toward the slippery slope of "Why, God - just WHY?" These questions are best left for your first (or maybe second) face-to-face with the Almighty. Otherwise, they. will. destroy. you. Faith is about trust. Trusting that even what you cannot see is real. Trusting that the one who knit together each fiber of your being is holding you in the palm of his hands, even when you feel like you are free-falling. And trusting that his love for you is bigger and stronger and deeper than anything that this short life on earth can throw your way. You know when your kids are mad as hornets at you for not letting them _____ (get something, go somewhere, hang out with someone - fill in the blank), and you tell them that someday they will understand when they are older/when they have kids of their own they'll get it . . . they don't have the experience or capacity to understand why you are doing what you are doing now, but someday will? Yeah. That. God is that parent. We are those insolent, mad, unable-to-understand children. Someday we will have the capacity to see the big picture and there will be no more "whys."
Today I don't feel like I have a friend in the whole galaxy. A common feeling when you are enduring something that no one else in any of your circles is. The secret is to let those in who want to be all in with you. And that may turn out not to be who you expected, but it really is best to know who you can and can't lean on when life is feeling like something someone just scraped off the bottom of their shoe. Sometimes, these dark places are where the most beautiful of relationships emerge.
Today - I have no idea how I'm going to do this again tomorrow. I cannot tell you how I did it again the next day and next with Seth reacting differently each day to life as we knew it, as well as trying myself to adjust to our new normal as a family in our last precious months with Dad. Which means God did and continues to carry me when I can't put another foot forward on my own.
Autism lost.
God reigns over brain cancer.
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| Dad & I a few weeks after his diagnosis. |
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