Monday, September 22, 2014
We may not remember at what exact point in our lives we realized it, but I bet you have all thought about it.
What will happen when I die? Where will I go? Will I cease to exist?
Many have religious beliefs that help with these questions, but whether you do or not doesn't really matter, because despite the answers, we still have these questions:
Will it hurt? When will it happen? Will it catch me off guard?
These questions can be more plaguing, and most will try to live their lives cautiously to avoid an untimely death. But it's mostly out of our control. Most of us don't get to decide the logistics.
I remember the moment when I really began to fear death.
It was shortly after my first child was born.
Like being slapped in the face, I was hit with the thought of what would happen to my child if I were not around to take care of him. Panic instantly set in as I went over lists of names in my head of family and friends who could possibly take on this responsibility.
Are they already good parents?
Do they have the ability to care for a child?
Do they have the monetary means?
Would they be willing to take on the responsibility?
If you've had this experience, I'd many of you have easy answers to those questions. You know good, kind-heart-ed, competent, willing family members who would be fighting over the opportunity to step up in such a tragic circumstance.
Some don't have such easy answers.
Maybe you don't have much family. Maybe the family is willing but ill equipped. Maybe the ones closest to you have struggles of their own. Maybe they would want to, but couldn't.
No matter what the answer...easy or hard, it is something that really eats away at us as parents. Just the thought of leaving our children like that in this world is enough to shed tears, but to find a suitable substitute in some cases may be near impossible.
Will they love the child as you do? Will they have patience? Will they teach them all the tools they need to live a successful life? Will they be kind?
What if your child has a disability?
What if every ounce of effort it takes to raise that child on a daily basis is that times 10 of a typical child? What if your patience level needs to be a thousand times? Who is going to have that quality needed for your child?
When you see how the world looks and interacts or ignores your child, so you have to be the advocate every waking moment...who is going to fill your shoes?
This goes beyond being just a “parent”, although I believe parenting is the most important job a person in this world could have. This is a super-parent: an up-all-night-calm-all-day kind of super being!
Will the person have what it takes to continue to love this child when no one else does?
All we have to do is look at the news to see how autistic individuals are treated.
This is the fate of many individuals who HAVE doting caregivers and loving homes.
Where will my child be if no one steps up to the challenge?
Then there is the money. Who has the disposable income for life-long care?
And if you are biomed or homeopathic? Forget about it! Who is going to pay out of pocket when you can get prescriptions practically for free?
Will the person caring for my child care about their special diet? Will they understand how important a gluten free casein free diet is? Will they jump through hoops to have similar alternatives at all extracurricular functions? Will they cave to the peer pressure because they don't really understand why they can't eat those foods? Will they buckle after seeing the grocery bill for one week and switch to Ramen and Fruit Loops?
And what can we do about it? We will be helpless from wherever it is you believe we go after life on earth is done.
Will that person understand their needs?
Maybe if my child had super-human quality or trait to impress them. An impressive singer or dancer or pianist. Or an impeccable memory. Impressive artistic abilities. The world loves those kids.
But what about the biters, pinchers, scratchers and screamers? What if they can't tell you what they want...what is hurting...what they need?
Will they clean up the poop smears on the walls day after day and still cuddle them at night when they want to be loved?
Will they change their diapers when they are adults?
Will they cry out helplessly with every seizure and pray for it to end?
Children and adults with disabilities need a kind of self less love that is unfortunately diminishing in the world as we know it.
It is heart-breaking and horrific to think of any child losing a parent and not finding a loving home to thrive in.
It is down right all consuming and terrifying to leave an autistic child in this world without the ones who understand them and depend on them the most.
When we are doing all this worrying, we are visualizing the 'what-if's'.
Well, 'what-if' you were an autism mom, diagnosed with cancer.
Please, if you can, give anything at all to help this mother diagnosed with cancer have more time with her son.
Tuesday, August 5, 2014
Our little kitten is growing fast. He is about three months old now and as mischievous as ever. A few weeks ago, he started wanted to cuddle up to us at bedtime. He waits for the house to get quiet and he scales the bed with expert ease and gingerly walks up to my pillow, purring all the while. Oh how I want to cuddle and kiss this sweet little rambunctious kitten. Obsidian rubs his face across my face over and over again with a constant purr. It is hard not to melt into his cuddles. After a short minute he bites me. More than a nibble…enough to really give you a start. I stop and say, “no no, kitty” and l let him rub his face against mine….in a few seconds he bites me again. I move him away from me gently saying ‘no’ and cover my head with the blanket.
After a few nights of this routine, we started to shut him out of the bedroom. We couldn’t trust him not to bite us.
The joke in the house is, “This cat has given me trust issues.”
It wasn’t so funny when I realized it wasn’t the cat. I have severe trust issues, because like this kitten, I have someone in my life who catches me off guard and “bites”. Not in a literal sense, but an emotional one. I never know when it’s going to happen…I’m just certain that it will.
When Obsidian rubs his face against yours, your whole body tenses up, fearful for what is coming. You can’t relax and really enjoy the cuddles, because you know at any moment you will feel pain. And telling a kitty “no” is little less than a waste of breath. He pays you no mind, unlike a puppy you scold to stop chewing the furniture. Puppies feel bad they disappointed you. Cats just wait to do what they want when you aren’t looking.
I’ve realized I live in a state of constant fear. And it’s not even physical…but mental and emotional. I never know when the other shoe will drop and when my world is going to come crashing down. There’s big stuff, and there’s small stuff….but no matter the anger, the tears, the lectures the threats…..it’s always easier to ask for forgiveness than permission. I’ll do what I want now and just deal with it when she finds out.
Trying to explain how that feels….how you can feel so alone and helpless and unloved when someone disregards your feelings in such a way…..I don’t know how to put it into words…but the bottom line is It Sucks!
What kind of person has no empathy? Sometimes I think I’m dealing with a personality disorder. But I keep on. Every day.
Sometimes I cry and cry thinking about how much it hurts. Sometimes I’m numb.
How much longer will it last? When can I be free from the fear? I don’t think I will ever completely trust a person ever again. I’m broken on the inside.
How much time will I need to heal if I am ever free? Will I ever fully heal?
I’m so tired. I just want to have someone to trust.
Friday, May 30, 2014
WE MADE IT!!
What an incredible year it has been!
Not only are we looking back at the 2013-2014 school year, as our first homeschooling year, but next month also marks one year of us living in our new southern location.
So much has happened this year! It has gone by haphazardly fast...I can hardly believe it!
I started out diving head-first into Hashimoto's disease when we moved here last summer, and have been trying to claw my way out of that paper bag since.
I frantically began to volunteer for my church, pleading for God's blessings from self-less service to help get me through my darkest hours. Soon, I became the leader of the teenage girl's youth program, demanding Sunday, Wednesday and many Saturday requirements.
I was wonderfully blessed when I read a blog by The Thinking Mom's Revolution's magnificent DragonSlayer, giving me crucial answers to help me get my health back on track and regain some of my sanity!
While struggling with the ups and downs of autoimmune disease, I somehow managed to find myself part of TEAM TMR, a non-profit grant program to help families with the financial burden that is all things autism. Before I knew it, I was immersed in writing a chapter for the book that would be sold to fund the grant program, and forever nicknamed Green Bean Girl.
My autism activist blood runs deep and I soon found myself at the Give Autism a Chance Summit in Austin, Texas, where I was graciously welcomed in the home of my new warrior buddy, Lone Star, and her adorable family. There, I was introduced to another strong warrior member of our team, Chief, who writes about recovering her daughter in our book.
Just making it to the summit on the heals of yet another protocol I was trying to ease my health issues proved daunting, but I MADE IT!! I was so excited to see some of my much loved/ FB stalked heroes, like Kim Stagliano, managing editor of Age of Autism, and Ginger Taylor, co-author of Vaccine Epidemic. As I anxiously observed from afar, I was soon greeted with warm, energetic hugs from The Rev and Tex, co-authors of The Thinking Mom's Revolution: Autism Beyond the Spectrum.
(for more on why I love these ladies, see the video below)
Then, with the help of my new TMR buds, I was able to get my first picture with a movie star...hmmm do you think I was nervous?
Aidan Quinn and Rob Schneider!
I also had the privilege of meeting Barracuda...my other TMR BFF and her brilliant family, not to mention the sweet walking-miracle, Sophia.
Around the same time, I started working for a respite care center in a nearby city. I am called in as a "fill-in" on short notice when a staff member is sick or needs a personal day. I work primarily with autistic children and adults. Because of our homeschooling schedule, I am often asked to work the 4-12 shift and some over nights and weekends. This proved difficult, as I also took my son to an early morning scripture study class each day from 6-7 a.m. It immediately became more responsibility and time away from my family than I had anticipated.
The school year comes to a close at the same time we are promoting the launch of our book, Evolution of a Revolution: From Hope to Healing. That's when God thought I needed a bit more love in my life, and left a tiny kitten with it's eyes still shut, outside our neighbor's house.
You can imagine we did the only thing possible....bring him inside, keep him warm and dropper feed him formula every two to three hours.
Wow! It HAS been quite the year! And we are not through! My husband is actually excited to make plans to take the family to the Autism Education Summit in Dallas in October! Bring on the activism!
As the boys and I danced and sang "School's Out" to celebrate our last day of school (well, one boy danced with me while the other commented on how school wasn't really out forever and other snarky realisms that truly fit this un-official Aspie kid) I couldn't help wonder what in the WORLD would be in store for us in the year to come!
“There is no greater agony than bearing an untold story inside you.”
― Maya Angelou, I Know Why the Caged Bird Sings