Monday, August 29, 2016

Escalating Epinephrine and Misplaced Hope


Brothers and sisters, we want you to know about the ·trouble [trial; tribulation] we suffered in Asia [C a Roman province in present-day western Turkey]. We had great burdens there that were beyond our own strength, so that we even ·gave up hope of living [L despaired of life]. Truly, in our own hearts we believed we ·would die [L had been sentenced to death]. But this happened so we would not trust in ourselves but in God, who raises people from the dead.  God ·saved[rescued; delivered] us from these great dangers of death, and he will continue to ·save [rescue; deliver] us. We have put our hope in him, and he will ·save [rescue; deliver] us again. And you can [or …as you]help us with your prayers. Then many people will give thanks for us—·that God blessed [for the gift/favor given to] us because of their many prayers.
~ 2 Corinthians 1:8-11, EXB ~

By now you may have heard the latest large pharma scandal as consumers reel from Mylan's prohibitive price increase for their widely used Epi-Pen®. If you are a parent like myself, who has a child with life-threatening allergies where this medication is prescribed, it is easy to be prone to panic. From the time our children receive their first diagnosis or treatment for something that is not quite right, we caregivers are single-minded in our pursuit to keep these precious kids alive and thriving. Our hope can end up being misplaced in looking towards cures and expecting mercy from modern medicine.


As for my family, this isn't the first time we have stared this sort of pharmaceutical nightmare in the face. When our son was first born in April of 2000, there was a nationwide shortage of the life-saving blood clotting factor he desperately needed to treat his severe hemophilia. There was great concern in the bleeding disorders community about the ability to treat the disorder prophylactically, undue joint damage because of hesitancy to treat prophylactically, and the fearful thought of possibly having to return to human plasma-derived product, which evoked the not-too-distant-fear of AIDS contamination. Once we got through that season in the community, we quickly learned that the fear of product shortage was eclipsed by the heart-stopping price. Patients like our son face an annual drug cost alone beginning at $100-300,000. Those numbers are daunting, to say the least!


Yet, even with these crises, the Apostle Paul stood as an immovable example to me, as he still does now. In the first chapter of 2 Corinthians, he barely begins to scratch the surface of all the adversity and life-threatening situations he had found himself while seeking to spread the Gospel. It isn't until Chapter 11 that Paul really lays out the ugly details of what he had faced:

Five times I received from the Jews the forty lashes minus one. Three times I was beaten with rods, once I was pelted with stones,three times I was shipwrecked, I spent a night and a day in the open sea, I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my fellow Jews, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false believers. I have labored and toiled and have often gone without sleep; I have known hunger and thirst and have often gone without food; I have been cold and naked. Besides everything else, I face daily the pressure of my concern for all the churches. Who is weak, and I do not feel weak? Who is led into sin,and I do not inwardly burn? (2 Corinthians 11:24-29, NIV)
Still, he proclaims in the next chapter the faithfulness and power of God. And Paul didn't have modern medicine to help him through all of this! There weren't antibiotic creams to treat the scars on his back. There weren't NSAIDs to help him manage the pain. There weren't pills for his churning stomach. God even denied him healing of his "thorn in the flesh." (See 2 Corinthians 12)

We are still talking about the impact the Apostle Paul had on history today because he put his ultimate hope in God alone. He did not put his hope in treatments. A cure is not where he focused all of his energy. He knew that only God held his life in His hand, had numbered his days, and would keep him secure until He had deemed "mission accomplished" in Paul's life.


The Lord showed me early on that all of my worrying and micromanaging would do nothing to spare my children's lives. I have had no trouble recognizing that I am NOT in control. Some of the most stunning, life-threatening situations with my daughters and son have occurred either while I was standing right next to them doing nothing unusual, or at times I would have least expected. There was nothing I could have done to prevent any of those traumatic events.

While it is certainly unnerving in today's practice of medicine to have a life-saving remedy to our children's well-being suddenly threatened, I, like Paul, cannot hang my hope there. I must walk forward in faith, still pushing back against institutional injustices like price-gouging, but ever-relying on our Maker. I trust him to love us and keep us as He sees fit. 

PRAY: Jesus, You have promised that You would never leave us or forsake us. Even when some of the world's institutions on which we rely fail us, You never will. Comfort my soul with that reminder. Holy Spirit, sooth my heart when I am concerned. Bring justice to those who suffer at the hands of today's giants. Give us peace as we trust You with it all.


~ Barb Dittrich


Friday, August 26, 2016

A Mundane Sacred Moment

photo credit: pixabay.com
Jesus knew that the Father had given him authority over everything and that he had come from God and would return to God. So he got up from the table, took off his robe, wrapped a towel around his waist, and poured water into a basin. Then he began to wash the disciples’ feet, drying them with the towel he had around him.

John 13:3-5 (NIV)

The Mundane

My son has a thing for smells.  He always has.  He used to be able to tell me that important ingredients were missing from his meal by just smelling it.  He would stick his nose in people’s necks and take a deep breath. Smells are his thing.  Touch is his thing too.  His first spoken word at 4 years old was 'tickle'. He has a nightly ritual that starts with his command of ‘rub head’.  He leans on me and offers his shoulder for a squeeze. Touch is his thing.

Maybe because he doesn’t absorb his nutrients well, or maybe he’s not drinking enough water or not having enough fatty acids, but his skin is very dry.  When he got older and became more independent, and would dress himself, but would pour or drink the body lotion, the lotion applications to his person became less and less frequent.  His feet are how hard and dry.

The Moment

Have you ever had one of those moments when disconnected, floating facts came together into a powerful whole unit?  That’s what happened when I realized that I can combine the 2 things he was into, and build connection with my son. I decided to get therapeutic grade, edible essential oils and coconut oil. The beautiful aromas are known to be helpful with moods and a range of other things. I’m not sure if it helped his mood directly. But he loves to smell his oils. So I add one drop to his wrist, and ask him to smell it. I ask him to choose which two oils her wants and he does.  Then, he presents his feet. And I massage them.  Sometimes, I’m in a hurry to get through this ritual. But sometimes, I remember that this is a gift.  I put myself at the center of two favorite things and created an interaction with him that has been wonderful for us both. 

The Ministry

Yesterday, while rubbing his feet, I looked down and took a mental picture of my hands on his feet. If I stepped outside myself, the scene looked menial, like a chore. It’s not magical like rubbing your infant's feet.  But it was beautiful. And I saw Jesus, washing his disciples feet, and remembered about servanthood, and sacred moments and the God that enjoys meeting us in the menial, mundane, difficult tasks and illuminating His presence.  I received the gift of being able to worship through service while giving the gift of deep pressure and lovely smells to my son’s feet.  All this in my ministry to dry, cracked feet. 

I could never have imagined all the ways that God would reveal Himself as I travel on this spectrum road.

Lord, Thank you for the gift of mundane tasks.  You give us the opportunity to practise your Presence in these tasks over and over, allowing us the chance to see that you are everywhere, in everything, transforming mundane into sacred. Today, please open our eyes to the mundane sacred moments that we will encounter. Open our hearts to worship you as we engage.
Amen.
- Faith


Thursday, August 25, 2016

How to Help WITHOUT Having to Wash Their Feet

Image Courtesy of winnond/freedigitalphotos.net
After that, he poured water into a basin and began to wash his disciples' feet drying them with the towel that was 
wrapped around him.
"Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him.  
Now that you know these things, you will be blessed if 
you do them." 
John 13:5, 16-17 NIV

The tragedy strikes...be it a new diagnosis, a sudden illness, or worse...a death.

Or, maybe it wasn't a tragedy, maybe it was just a breakdown that someone saw at a time when you weren't expecting it, and that person says those fated words:
  • I wish I could help.
  • How can I help?
  • If only I could help...
And we say, "Oh, thank you.  I'll let you know if I think of something."

Guess what?  We NEVER think of something.  
We are too busy surviving to think of something.  
What we need is HELP that shows up when we DON'T ask.

When my daughter and I were at camp last month, our feet reached a level of "filth" that I can't express in words.  BUT, I'll try...it took me three days of showering to actually NOT see dirt in the creases on my feet.  I would wash my feet with a bar of soap and watch the muddy water roll down the drain and they were STILL dirty when I was done.  We could wear socks around the cabin and STILL have dirt on our feet (not to mention what our socks looked like) when we took them off to go to bed at night.

These were some DIRTY, DIRTY feet.  And, I imagine that's what Jesus and his disciples' feet looked like as well.  They lived in a dry, dusty climate and they walked around in sandals, right?  They walked EVERYWHERE like that!
Can you imagine what their feet looked like by the end of the day when Jesus got down on his hands and knees to wash them?
Now, here's the funny thing...my dear, sweet, adorable daughter who was working her tail off at camp had dirty, filthy feet at the end of the day and she said, "Mommy, can you rub oil on my feet?"  (This is something we typically do at night in order to help her sensory issues and anxiety.)  My loving, motherly reply?
No way!  We are not putting oil on our feet here, it would turn into mud and be disgusting!!!
That's a sweet mom, right?

But then it hit me what Jesus had done for his disciples and what he had asked us to do for one another.

Wash one another's dirty, filthy, stinky feet.  

In this month of Special Needs Parent Appreciation, I want to take a moment to talk about how others can HELP parents of children with special needs.  (And you don't even have to wash someone's feet!)  I learned some things when my daughter was diagnosed with cancer and when she had a hole in her heart repaired and when had multiple eye surgeries.  And now's the time for me to let others know...
HERE'S HOW YOU CAN HELP. 
Put together a SURVIVAL KIT.  It might be something they use for frequent clinic runs, it might be something used while IN the hospital or waiting in recovery.  Put it all together in a backpack or duffle bag.  A great survival kit includes:
  • Bottles of water
  • Gift cards for nearby coffee shops, gas stations, restaurants
  • A cheap fleece blanket easily found at a local store
  • A deck of cards or sleeve of dice with instructions for some games
  • An iTunes gift card in case they need to download something for entertainment
  • Granola bars, fruit snacks...or other non-perishables
  • Crossword puzzles, Sudoku etc.
  • Warm Socks or slippers
  • Flip Flops
  • A travel pillow
  • Bubbles (sometimes questionable, but they worked great for bringing a smile to my daughter's face)
  • Gum and breath mints
  • Small notepad and pens for taking notes when meeting with doctors and specialists
  • Travel sized toiletries~deodorant, shampoo, lotion, toothpaste, mouthwash
(In case you need to get a survival kit together quickly and are afraid you just can't coordinate it, you can always visit the Snappin' Ministries website to request a TLC Basket be sent to a family with special needs!)

Or, do some of the following things:
Water their flowers/garden
Shovel their snow or mow their lawn 
Drop by with some staple foods like bread, cheese, canned items, breakfast cereals, soups
Offer to pick their kids up from school or take them to school, church, or other activities so the parents don't necessarily need to make "one more trip" somewhere
There are many "little" things that come up every day which are small, and we don't ask for help because EVERYONE has to do them...yet, when our daughter was sick with cancer or recuperating from a surgery and we'd look out the window and realize that someone had shoveled the foot of snow that had fallen on our driveway???  Oh my goodness, that was like God shining directly down on us and saying,
"See, I have not left you.  You are not alone."
You can be the answer to someone's prayer just by "showing up" without being asked.

God came down from his throne in Heaven and washed some dirty, filthy, stinky feet...I mean...that is something I couldn't even bring myself to do for my own DAUGHTER!  And then, he told us that we would be blessed if we did the likewise.

This is our BATTLECRY today...Go forth and look for those who are weary, depleted and needing a little encouragement today and WASH THEIR FEET (without actually having to wash their feet).

Pray:  Heavenly Father, thank you for moments of clarity when we realize just how desperately the world around us needs ENCOURAGEMENT.  Open our eyes, Lord, to see the hurting...then help us to see how WE can be the HANDS and FEET of Jesus by serving them.  Help us to not just have GOOD INTENTIONS...help us to turn those intentions into ACTION.  Help us to bring your Kingdom down to earth and remind the families of people with special needs that you have not FORSAKEN them.  Amen.

~ Tammie Hefty







Enter today's drawing as we continue to celebrate Special Needs Parents Appreciation MonthToday's prize is another small pampering package with a retail value of $12.  Simply leave a comment below and also "Like" our Facebook page


Wednesday, August 24, 2016

1 Corinthians 13: The Autism Parent's Edition

Photo Credit, David Niblack, Imagebase.net
Love is patient, love is kind. 
It does not envy, it does not boast, it is not proud. 
It does not dishonor others, it is not self-seeking, 
it is not easily angered, it keeps no record of wrongs. 
Love does not delight in evil but rejoices with the truth. 
It always protects, always trusts, always hopes, always perseveres. 
Love never fails.
1 Corinthians 13:4-8a (NIV)
I have regularly made the reading of 1 Corinthians 13 part of a spiritual self-check. I read the passage, often out loud, and insert my name in place of the word "love." It is a humbling and convicting exercise. Recent interactions with my daughter have brought me back to this place - the place where I realize that to love her well, I have to love her in ways she understands and needs, not what suits me best. It has made me look at this passage in a new way:
Love is patient. It answers the question about what's coming next for what seems like the thousandth time in the past two hours, despite having visual calendars and daily agendas available for her to look at anytime. It deals with the child who gets out of bed over and over again before finding sleep, trying to find a way to calm her anxiety, praying with her for the peace and rest that her mind and body need.
Love is kind. It explains for the umpteenth time, in a calm and quiet voice, why your child needs a place to go and chill out when group situations become overwhelming, why your child can't eat certain foods, and why your child refuses to keep her socks and shoes on. It resists all urges to act in ways that are unbecoming and would cause an embarrassing scene.
Love does not envy, it does not boast, it is not proud. It rejoices with other parents when they celebrate their child's milestones while their own children are far behind, and it resists the urge to accost everyone it meets with tales of the latest victory in occupational therapy or physical therapy or speech therapy or ABA or . . . .
It does not dishonor others, it is not self-seeking . . . . Love treats the stranger who stares at your child's public meltdown with respect and an attempt at humor instead of giving in to the immediate reaction that bubbles up - sarcasm, or worse. Love looks to see where others might be struggling and need a quick text or email of encouragement, even on the rough days, determined to remember that parents of kids with autism aren't the only ones who struggle.
. . . it is not easily angered, it keeps no record of wrongs. It swallows frustration and hurt over and over again, as our children struggle to make themselves understood and communicate their needs, often in ways that hurt deeply. It finds ways to set the hurt aside, putting your child's needs ahead of your own, making sure that your child feels your love and acceptance instead of residual pain from behavior they are still learning to control. (All this while trying to teach them that their behavior has consequences and does cause problems for other people.)
Love does not delight in evil but rejoices in the truth. Love rejoices in hearing about families who are loving their children well, getting them the help they need, even if it is different than the choices I have made for my child. Love does not smile smugly at the misfortune of those who have made unkind comments about my child or my parenting, but reaches out with Christ's strength to see what I can do to help.
It always protects, always trusts, always hopes, always perseveres. Love works hard to look on the bright side, even when another diagnosis complicates things, a food allergy restricts the diet further, and sleep deprivation requires caffeine consumption at dangerous levels. Love continues to research, fight with insurance companies for coverage, and work daily with their child to help her reach her full potential, whatever that may be.
Love never fails. Love trusts God to get through each day and to give the strength needed to do whatever needs to be done that day, even while praying for a nap, drinking lots of caffeine, and eating dark chocolate. And love does this 24 hours a day, 7 days a week, 365 days a year, because most parents of kids with autism don't get respite - or not nearly enough.
Pray: Father, please help me to continue to stay the course, even on the days that I'm exhausted and think I can't possibly do one more thing. Please help me to be more like Christ each day so I can say to my children, like Paul, "Follow me, as I follow Christ." Give us your peace and patience as we navigate the difficulties of this life, and help us to learn to love one another with the love that only you can give us for each other. As we are filled with more of your love, show us how to love others and be your hands and feet in a world that is hurting. Amen.

Tuesday, August 23, 2016

Shine Your Light

“You are the light of the world.
 A city that is set on a hill cannot be hidden.
 Nor do they light a lamp and put it under a basket,
 but on a lamp stand, and it gives light to all who are in the house.”

‭‭Matthew ‭5:14-15‬ ‭NKJV‬‬
I often talk about my son shining his light. 

I am not so sure a six foot tall teenage boy that is significantly impacted by his Autism diagnosis even needs a lamp stand. He just shines, often in ways that I didn't even understand were possible.

He has shone a lot, especially since we moved to Arkansas and into a new school system. 

Shining, being the light.

It's not an easy task, and it's especially difficult as parents of a child who may not always be able to say "put me on that lamp stand and let me shine".

To say our arrival at his new school was difficult would be a understatement. It would equally be understating the facts to simply say they "took care" of the situations brought to light by his presence.

I did little to nothing, I didn't have to. His light shone so brightly that he exposed everything that was "tucked away, out of sight and out of mind". He exposed it for all the world to see, and changes were made.

It wasn't easy on any of us, especially my son.

But I had prayed, and I knew God had put us where we were supposed to be. I didn't know why we were where we were but I had to trust that putting my son out there, letting him shine in this place, was in fact what God wanted us to do.

While there were serious difficulties we were encountering, there were also many people willing to step up. They not only acknowledged "we need to change", but they actually did the work to change. They worked hard and tirelessly to put in place what my child and others needed. This was an enormous benefit for all students, and staff.

The light of my son, of our children, cannot be hidden. 

Putting our children out into the world can be one of the hardest most heart breaking things that we have to do. It's in our human nature to guard and protect them.

We have to remember...

"They are the light of the world..."

We are entrusted with these little human beings, and tasked with growing them into the incredible lights that God created them to be. 

Sometimes we don't know or understand the what and the why, and sometimes we have to trust the where. But then there are the times we get to see.  This is when we are reminded of the fact that our children are created for a purpose, even though we may never grasp the enormity of it all.

So we do not light a lamp and hide it under a basket. We place it carefully on a stand, even if it is six feet tall, and we guard and protect it the best we can while it shines out into the world.  
As for the times when our hearts may break as they venture out into the world, we remember the words in Matthew 5: 14-15...

“You are the light of the world.
 A city that is set on a hill cannot be hidden.
 Nor do they light a lamp and put it under a basket,
 but on a lamp stand, and it gives light to all who are in the house.”

Heavenly Father I pray for those mothers and fathers whose hearts break as they help their children step out into the world and spread light into the darkness. Father comfort and strengthen them as they stand guard at the lamp stands where they have carefully and obediently placed their children... and Father I pray for those children, I pray that You protect and comfort them as they travel a frequently difficult and sometimes dangerous path. God I know that You are with them, and that You will never leave them...and I pray that each and every parent holds that knowledge and is comforted. God we are thankful for this journey we are on and the opportunities we are given to see Your light come shining through Your incredible creations that You have entrusted to us. In Jesus name. Amen.

~Beth 





Enter today's drawing as we continue to celebrate Special Needs Parents Appreciation MonthToday's prize is a the book Anxious: Choosing Faith In a World of Worry, by Amy Simpson.  The book has a retail value of $12.  Simply leave a comment below and also "Like" our Facebook page