Tuesday, April 28, 2015

Give Me the Grief

I've spent the last year trying to balance optimism & realism, then grief & hope within myself - first for the sake of my dad, as well as for both of my parents, now for just my mom; and all along for my husband and for my children.

Death is sort of a lifelong pursuit, just not one most participate in willingly. We spend our lives avoiding it, anticipating it, planning for it, learning how to postpone it, learning ways to accept it, talking about it, *not* talking about it, and finding ways to cheat it. 

When all of that is sped up and reduced to 126 days with someone you deeply love, it changes you. I told a friend shortly after Dad moved to heaven that it felt like the molecules of my actual being had been rearranged. 

Going through the actual process of dying with someone you deeply love *changes you*. 

When Dad was diagnosed with six brain tumors, my focus went straight to him and Mom and my brother and sister; for that is where the circle of our entire extended family began, and so it shall be that the first one of us to leave will leave from that still-tightly-intact and bonded circle. And then we close it in tighter to seal the gap. 

I sometimes sing that old hymn from my childhood in my mind, 

"Will the circle be unbroken?
By and by, Lord, by and by,"

and I think, "No, never," because our faith promises we will all be reunited, one by one, in eternity to finish out what God started with us here on earth. 

The grief process, they say, is long and slow and can take years to get through. But I say it lasts an entire lifetime - grief is just the last leg of the tour. 

I now see that the process begins when you are born and you spend your life building and nurturing relationships with those whom God plopped you among - whether by birth, adoption, or just life circumstances. Bloodlines dictate looks and health history and that's about it. Love dictates family. 

The bonds you build, like roots, take hold early and grow deep from there. 

There is no grief without deep love, and there is no deep love without bonds, and there are no bonds without relationships. 

So deep grief from the loss of someone begins the moment those relationship roots start to grow. There is no avoiding grief without avoiding love in the first place. And having no deep love in your life would be far more painful than experiencing no grief would be painless. 

So give me the grief. 

Friday, April 24, 2015

Blessings and Brain Tumors

One year ago today - 16 days after an ER doctor found 6 tumors in my healthy dad's brain, and my "high-functioning" autistic son basically had an emotional breakdown trying to process and deal with his Papa's diagnosis and impending death - I posted this on Facebook:
Today my positivity meter has busted.
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.
Seth never did return to his 5th-grade classroom.

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.

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.

I did it!
 One year ago ...
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.
Today ...

Autism lost.
God reigns over brain cancer.

Dad & I a few weeks after his diagnosis.

Friday, January 2, 2015

Life, Love, Jesus & Dogs

I'd like to think there are a few things I've learned in these short 43 years I've been here. Some may disagree and that's okay, because that's actually one of the things I took to heart very early on (much to my parents' dismay). Disagreeing with others - and vice versa -  is perfectly fine. You just have to keep a good perspective on it and find the right balance. (Learning that last part would come much, much later.)

It's a really good thing they didn't have the whole it's-okay-to-drop-your-kid-off-at-a-safe-place-to-dodge-prosecution thing in the 70's, or I'd probably be writing this somewhere in Nebraska.

Listen. Half the people will agree with you some of the time. Some of the people will agree with you none of the time. A few people with will disagree with you for the sake of not agreeing with you. And most of the people will agree with you if you agree with them. Well, I'm just not wired that way.

My beliefs and faith are deep and I agree with what falls in line with those - and I disagree with things that sound and look stupid and might get me punched in the face.

I Am The Crazy Dog Chick and have been since the authorities in my tiny hometown knocked on our door when I was a child and asked my mom if I could help them catch a dog that none of them could get close to - because I'd been wooing the stray dogs of Farmland, Indiana, to my home successfully for years. I also may or may not have opened up the outdoor kennel behind the town fire station where those dogs were taken and let them all out a time or two.

Today I work in dog rescue and manage a dog daycare. Go figure. But here is something of what 40 years of whispering into the ears of any canine who would listen - and actually listening in return - has taught me.

Dogs are closer to showing the love of Jesus to every single person they set eyes on than any human I've ever met. You wanna wrap your mind around how much God loves us, how easily God forgives us, and how bad God's memory is of all our stupid human tricks? Go out to your garage for three minutes and come back in to your dogs. They'll act like you've been gone for a year and have no memory of you yelling about them running inside with muddy paws and immediately jumping onto the couch 15 minutes ago. That's how God loves us. No matter how long we're away from him - two minutes or nine years or forever - he's waiting on the other side of the door when we walk through it to love us and embrace us, with no memory of all those things we did and said. Just pure, unending love and unconditional forgiveness. Simple as that. It really is. Ask your dogs. Try and make them pinpoint why it is that they aren't mad at you for leaving them every day for work and forgetting to feed them last Tuesday, and what it is about you that they love so much? They're going to look at you like, "Have ya lost yer damn mind? I just love you. I LOOOOOOOOVE YOUUUUUUUUUUU. That's it. Let's not complicate this."

Of course, not every single dog is that way - but every single stitch of God's being is. And by the way, when you run into Christians acting in very opposite ways of that under the disguise of "God's love" or his word in the Bible, please run the other way and realize they do not represent God's love or Christians as a whole any more than Oprah Winfrey represents all women or Weird Al Yankovic represents all men. Keep it in perspective, folks. Just because someone calls themselves a Christian, doesn't mean they are showing the love of Christ. 

Pinterest Is the Devil's Folly I cannot think of many more arenas in the free world wherein good, smart, well-intentioned folks are being suckered into thinking that cutting old books into the shapes of letters for decoration (which is so stinking cute, by the way), making a party more about what everything looks like than who is there to actually spend time with you, and bringing back paper mache are good ideas. Paper mache is a flipping mess.

Ten minutes on this web site, and either your priorities are suddenly flipped upside down and you become obsessed with turning your suburban home into a Country Cottage photo spread; or you walk away feeling so deeply and unequivocally inadequate as a mom, wife, and all-around human that you're depressed for the next week as you look around your incredibly lived-in, messy, Goodwill-furniture filled, you-found-a-mouse's-nest-in-the-pan-drawer-of-your-oven (true story) home.

If you turn a very private moment of your life into an adorable Pinterest-worthy spread and post it on Facebook, (cue Jeff Foxworthy) youuuuuuuuuuuu might have your priorities cranked.

Devil's. Folly.

The People Who Matter Will Love You If You Let Them See You This is not so much something I learned, but something that's in my DNA and there's nothing I can do about it.

Be Real. Be real, people! You'll cut to the chase of who will love you back for who you are much, much quicker and with exponentially less drama and heartache. Some people are very well-refined. And some are not. Again - that's okay. If we were all the same, how absolutely mind-numbing and spirit-crushing would that be? Life is about diversity, about people thinking differently, looking unique, loving different things, and having different qualities. If you're trying to be like someone else, who is going to be you? I tell my boys all the time that when they are talking bad about themselves, they are dissin' God because he created them very specifically and they are doggin' on his work. Knock it off.

Diversity = dimension = how we discover deeper layers of ourselves and others to love and share and for others to love and share back = a richer, fuller life for everyone here on earth.

Life here on earth is too short and precious to try to be something you're not with a group of people who will only accept you if you are just like them and look at you sideways if you're not. You are you, and there are people out there who want you to be you, because that's what they love. These are the people who will make up your village. And believe me, at some point if you haven't yet - you will need a village.

Lastly, children are the future - and that's not just a song. Love them, embrace them, encourage them, do not let them get away with crap, teach and show them the love of God from day one. Cushion them when you need to, push them off the ledge to make them fly when it's time - and pray for discernment to recognize the difference. Children are precious - and absolutely can be broken in so many ways. So yeah - don't do that.

Here's to a great 2015 and learning more that we can share with others, loving those around you unconditionally, giving much more than you receive, and treating people how you'd like to be treated in return.

In 2014, I learned a lot that I never wanted to know and lost a lot that I am still ill-prepared to go on without. It was the absolute worst year of my life so far. But God has my back, as do the people of my village. So go rescue a dog (I can help you with that), stay off Pinterest, and be happy with what you have already.

Peace out, 2014.