Candy-Coating Autism

"It wasn't as positive, and encouraging as we prefer. Could you possibly remove some of the more negative comments,

and replace them with more hopeful observations?" I was speaking with a representative of one of the more prominent autism organizations. I submitted an 

article and they liked it, but...

I couldn't even reply, a tsunami of emotions swelled. I wanted to say something like, "If only! If only I could remove some of what is

real, and replace it with a gentler reality, I assure you, that would be my dream." 

I wanted to do it...I tried to do it. The truth is, I JUST COULDN'T DO IT. I want the things I write to be read, to make an impact and yet...

If I'm nothing else, I am genuine. I write things that don't always go down without leaving an acid aftertaste. True, some are harsh, but always they are REAL.

I pray to write things that are full of life, full of hope, and encourage others. But...Truth is very important to me, and I suppose 

I'm just not very good at "candy coating" autism.

The struggle to be open, genuine...transparent...it's not an easy choice. To be real with you, to open up my heart and expose what autism, endless seizures, 

and so many other medical issues do to a person...but not just any 'ole person, to MY SON. What it often does to my whole family.

Opening a wound up for the world to inspect and pick at is not for the weak.

But the truth is that even those with the autism label, those who are suppose to be the countries resources, don't want the

truth without just a little tweaking...cleaning it up, some fluffing? They want you to care...but they don't want you to be appalled.

We all love to read what I call the "exception to the rule" story. I know I do. When the miraculous happens. When Britton typed in 2015

and he was so excited about it that he pushed himself. Typing was what he wanted to do constantly. It felt like a miracle, it was a miracle. 

He typed wonderful powerful words of encouragement daily. He was so encouraged, and he encouraged hundreds of people. 

He typed, "I eat hope like candy." It's been our theme ever since.

The year spun by in so much laughter and the whole family ate hope like it was coming from an unending fountain. 

But then...the seizures came. 

They came with a vengeance, dislocating his shoulder over and over and uprooting the very hope we thought had become a part of us.

The relentlessness of the seizures caused Britton to type that "the never of it" made his life unbearable. Yep, he does have a way with words. 

Since October he has lost over 50lbs. He cannot seem to eat more than about 500 calories...on a good day. We are doing what we can....

we are praying, we are speaking to a doctor constantly...we will get this turned back in the right direction. We have to. 

This young man does nothing half way. He's either on top of the world, or down at the bottom of a pit where no light can reach. 

The weight loss and I'm sure blood sugar plummets and weakness have been really discouraging. The pain is probably one of the hardest symptoms to 

manage. I was trying to talk with him about what we should do when he took up his iPad and began to tell me EXACTLY how he felt.

"I am losing hope. I hurt and hurt and I want it to stop do you believe it ever will? 

I believe hope is not as easy as everyone pretends. Hard for real boys, 

we pretend for it but sometimes we wake up to what is true.

I wondered after I read his words how often I "pretend, instead of embracing what is true?" Do I pretend that somehow his life will get easier?

Do I pretend that there is hope, where hope is rarely ever found? Am I an imposter? Where is the line drawn between Faith and

foolishness?

It was a dark day and I didn't want to share the words....then I thought of how often I am censored by family, by friends, 

by editors, by public platforms.... Then I knew. Telling the truth is what I am called to do. I will never censor him again! 

Maybe what I write is not for those on top of the world--but for those underneath one that has collapsed?

Jesus is honest about the life we are called to lead. There is no guarantee that just because we belong to Him we will

go unscathed. Mostly there is a guarantee that we won't. 

Not everyone deals with a life as intense, and draining as someone who suffers with severe autism. The world would

not be able to bear the weight of so much grief, and would crack underneath it. Those of us living it...have cracked more

than once. But, everyone is living with the "thing" you wish was different. The thing you pray about day 

after endless day. "The thing" that steals your sleep at night. That's the thing the enemy uses to steal your hope, and then 

accuse you of pretending when you argue that it is FAITH! (Never agree with your enemy) 

This past week when all my ads were taken down by facebook...for policy violations, I could

not begin to understand what could be the problem. I changed verbiage, I took off a lot of the text. I tried hard to comply.

I'm unsure if they will ever allow me to place ads again? All my fears have come rolling in. How will I sell my books? How

will I tell the world the risks? What has all this hard work brought me? Then I remembered the last question Britton asked

that day. He said, "Did the sadness make you blind?" The answer is...the sadness gave me eyes to see truth that others

look away from. The sadness has made me bold, and strong. Maybe not as brave as Britton, but I'm getting there.

We can't let the "thing" that keeps us in prayer, the "thing" that that keeps us on our knees, the "thing" we can't see 

a way out of or into, or over...We can't let that thing makes us numb, or blind. It's that "thing" that can sharpen our edges,

give us better vision of what is true, and sand our hearts with compassion for others. 

It seems like the perfect moment to ask ourselves, "Is the "thing" the fear, the anger, the frustration....

making us blind or is the "thing" making us brave?" 

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My Momma Never Ate the Last Piece

What is your best memory of your mother? It's hard to decide...my mother, was a mother extraordinaire. Most of the time she was the perfect mix of nurturing and discipline. She was hugs anytime one was needed, but she was a boundary keeper when you didn't follow the rules. I don't know how she knew how to be a great mom, she didn't have a mother to model. She lived with what is fair to call, a real-life "evil stepmother." Perhaps she learned how to be a mother by watching what NOT to be? Maybe...or maybe she was just born to be one, and it was a gift given to her by God? I'm not saying she was perfect and I'm not saying she didn't make mistakes, but overall, my memories of my mother are pretty stellar. She balanced caring for four little girls with the skill of a circus juggler...and lion tamer. The crazy thing is, she always looked beautiful while she did it. 

I wanted to say that first because...I never wanted to be a mother, EVER. It looked like the hardest job in the world and I just wanted...what I wanted was to not have a big family. To indulge myself with all the things, the nice things my momma never had. She cleaned sticky fingers and faces. She must've wiped down the kitchen table more than ten times a day. She washed a mountain of laundry, combed the hair of four, wiggling, struggling little stinkers. (We did occasionally get a swat for all that wiggling.) She ran herself ragged most every single day, and then come 5pm, she stopped, bathed us all, had us in pajamas and herself in lipstick when my daddy walked in that door. THAT was not the life I had in mind.

I wanted to be able to read books late into the night, go to nice restaurants, live in a house that didn't require constant cleaning. Buy my clothes at a store, not have to sew them myself. Nope, a family, children, that was not the life for me. When people would ask me, "when do you plan to have a child?" I would say, "I don't." That's the honest truth, I had ZERO plans to have one. 

But as you already know, God had other plans. At only 21 my goal of self-indulgence was interrupted by a beautiful baby girl. I spent nine months in sheer terror. A baby, I didn't like them, didn't hold them, the biggest problem was, they could not be controlled. The things I knew about babies I could count on one hand. My momma wasn't the kind of momma that passed the care of the little ones to the older ones. She did it all, and she did it well.

I remember being 7 months pregnant and struggling to eat. (I was always nauseous.) I burst into tears at the dinner table, and squawked out..." my momma never ate the last piece of chicken. She was always suddenly too full if one of us wanted it. What if I'm really hungry but our baby wants the chicken?" Randy laughed and laughed till I finally got mad at him. Blubbering I tried to make him understand. "You don't get it... If we needed something we couldn't afford, my momma could make it. She always, always, always found away." Case in point- one really lean Christmas she went to construction site begging for leftover wood. She made each one of us a doll cradle. She painted them and made them beautiful. I loved that cradle. My doll lived in that cradle for years...I even put my baby brother in it. Do they make momma's like that anymore? 

My momma left me a pretty big apron to fill, I couldn't imagine being anything but as good a momma as mine...and yet, I didn't think I was born with her gifts. I would need to figure it out, find a way...and pray nonstop. 

I hardly ever see my momma now...she lives 500 miles away. She is 80 years old and on dialysis. I live with severe autism, and Britton hasn't been able to travel for a lot of years.

My momma doesn't complain too much, though I can't imagine how she manages her own care and my dad's dementia. Recently she said to me..."How do you do it? I'm just so grateful God never asked me to be the momma of someone with autism. Britton is so blessed to have you, you are one gifted momma." She didn't know I cried, she didn't know how much it meant to me. I'm not sure I ever thought I had measured up, it was sure good to know she thought I did. 

These days when one of my girls asks me how to manage a situation with one of the grandkids, I am humbled and honored. I assure them they come from a legacy of good mommas. My youngest daughter said, "Well I figure you did a pretty amazing job with Holli and me, so who better to ask?" What a gift, what a compliment. In spite of all that autism steals away from a family, this priceless gift I got to keep. The determination to parent a child with all you have is truly a gift from God. 

I am grateful that God didn't let me have my way. Refused to leave me to indulge myself in a clean house, and reading books in my store-bought clothes. I am also grateful that he allowed me lots of practice with two girls before the REAL TEST arrived. Though I must admit, not many of the same rules apply when it comes to autism; and yet the love is exactly the same.

THIS IS MY MOMMA--my favorite picture of her

I know not everyone has a great mother...but hopefully, everyone had some momma figure that stepped in to fill in those big shoes. If you have an amazing mother story, please reply back, I'd love to hear them.

HAPPY MOTHERS DAY TO THE GREATEST MOTHERS I KNOW! 

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