Saturday, January 31, 2015

"Are You Serious?" Awards - Volume XLII: The "Who Cares About Rare" Edition


We have a dark little joke in our household...

You know those fractions of a percent they quote you with medical statistics?  THAT'S where our family lives!

While we joke about it to lighten the journey, life as a family facing rare disease can be complex.

For instance, when our son was diagnosed with Hemophilia A - Severe at birth, our pediatrician's comment was, "Well, we will be learning about this together."  With only an estimated 17,000 out of 320 million people in the United States diagnosed with hemophilia, more myths and ignorance circulate about this bleeding disorder than awareness and knowledge.

In addition, the treatment for such a disorder is just about as rare as the disorder itself.  You cannot just stop at the local pharmacy to pick up a medication and swallow it down.  This makes the clotting factor we administer to our son intravenously every-other-day at home incredibly expensive, currently running in the neighborhood of $260,000 per year.

Hallmarks of our son's disorder include joint difficulties caused by bleeding, psychological challenges caused by trauma, and financial struggles related to the cost of treatment and job disruption.  Care must be comprehensive because the effects of this disorder are so global in nature, touching every part of a person's life.  This means physical therapists, genetics counselors, psychotherapists, and financial advisers are all members of the medical team.  What this also means is that you cannot just go down the street to another doctor if you don't like your current doctor.  The specialists and the team are also as rare as the disease.

While we have learned to thrive in spite of this disorder and all of its madness, just writing down all of the nuances here makes my head feel like it's about to explode.  It's a mentally and emotionally taxing journey.  We wouldn't trade our son for the world, but we majorly need support!

These are only a few of the many reasons why I want to lose it when people wonder WHY they should care about World Rare Disease Day, coming up on February 28th.  The "Who cares?" attitude is incredibly short-sighted when people take time to look at the bigger picture.

Are you SERIOUS?!


In past years the motto, "Alone We Are Rare, Together We Are Strong," has been used in uniting the community for Rare Disease Day.  That's a good way of describing this global health concern, because while it may seem like it could never affect your family, collectively, it affects all of us.

For example, our family's rare disease stories also include those of our youngest daughter, who faces a different concern even more rare than our son's.  When she was a toddler, she experienced repeated allergic reactions to a variety of different antibiotics used to treat ear infections.  One of these reactions was so rare and lethal, I still can't look at photos of it without being brought to tears.  The name of this reaction is erythema multiforme, and it is so rare that the attending physician in the Children's Emergency Room had medical students parading into our exam room to witness something in my child that they may never have the opportunity to see again.  

Thankfully, she has been in the care of an incredible, wise asthma/allergy specialist, who takes this diagnosis seriously.  At the same time, it still vastly complicates her treatment for any sort of infection, particularly strep.  Every time she is ill to a point of needing an antibiotic, her pediatrician and allergist must consult in her care.  She must be closely monitored.  We have even had to cut a vacation short because we were too far from the safety of her Children's Hospital when she was diagnosed with a bacterial infection.  And she can never be challenged again with any sort of penicillin or, we have been told, there will be no saving her.


These are only our family's two rare stories.  And although a "rare" disorder in the United States is any diagnosis affecting 200,000 people or fewer, it is estimated that there are 7,000 rare diseases affecting nearly 30 million Americans, two-thirds of whom are children.  This means while a diagnosis may be rare, the impact is widespread.  This also means that we ALL know one or more individuals affected by life with rare disease!
Wondering if your diagnosis is considered "rare"?
Check out NORD's Rare Disease Database
As a rare disease family I can tell you that for us this means a continual underlying level of heavy, chronic stress.  Constant concerns about adequate treatment are intense and real. Coordination of multiple moving parts of our lives are a perpetual puzzle to be solved. Financial concerns -- the kind that most people think of as their worst nightmare -- never improve.

This cluster of issues make it even more crushing when people look at you in confusion, wondering why you just don't cheer up and relax.  Only those walking this sort of path seem to truly grasp how difficult this can be.

That is why we share our story.  You need to know.  You need to care!  Help is needed -- financial, emotional, spiritual, and practical.  Compassion is the answer, not turning your head the other way.  

Don't leave those who are "rare" to fight these battles alone.  THESE are the families Jesus was speaking of when he talked about serving "the least of these."  Be His hands and feet to them.  Spread the call to action by educating others around you!  Because if the Church doesn't step up, we look like the rest of the world, a hollow noise, all talk without action.

[Have a story to tell about your family's encounter with a rare diagnosis?  Share it at http://www.rarediseaseday.org/tell-your-story/]

To learn even more about how you can make a powerful impact on February 28th, visit the RARE DISEASE DAY WEBSITE.

And please join Snappin' Ministries' online observance of Rare Disease Day via our Facebook Page.

Friday, January 30, 2015

The Window of Separation

I went to church early last Sunday. Nothing was really peculiar about that day: I left early, got some coffee, and drove out to the church without a hitch. My trip only became strange when I pulled into the parking lot and looked out my window: in the neighboring minivan sat a large, silky-coated Golden Retriever, its' eyes large and motionless. I was forced to do a double-take (more like a triple-take) to the car, for the animal sat so still that I wondered if it was just a taxidermy piece created in poor taste. His eyebrows moved as he looked to me, quiet and a bit sappy, while his scrawny body remained put. 

My first thought was, Why on earth would somebody bring their dog to church? I'm sure they had their reasons, but whatever those reasons were, I couldn't manage to think of a sensible one. I wondered why the dog looked so solemn and skinny, why he was so quiet and accepting of isolation within a locked metal cocoon in a silent parking lot. Two-and-a-half hours later, I furiously asked myself why the car -- and the dog -- were still there.

I couldn't discern whether to be tearful or mortified, so I decided to be both. It ground my gears and jerked at my fragile heartstrings to see the poor pup still in the same spot, alone, almost abandoned, for well over two hours. Upon bursting back into the church, demanding to know who was responsible, an official at the church assured me that the dog was fine: dogs can live for more than a couple hours without food or water. Furthermore, the dog was in a dark car, bore a shaggy dark coat, and the temperature outside was easily over 30 degrees, so there wasn't much evidence to state that it could freeze to death.

The reassurance did little to calm me, since those hadn't been elements that had crossed my mind that day. What was truly ghastly to me was how happy this dog could possibly be. His expression was so emotionless and unfazed at my frantic concern, it occurred to me that this may be something normal to him, being cooped up without anyone by his side. It worried me, thinking this animal was used to not being held and loved, accustomed to solitude. I wondered what his little fluffy life was like beyond that car, and my heart sank at all the pitiful possibilities. 

Now, being the dramatic person that I am, I may have been acting quite presumptuous -- how was I to truly know the entirety of the dog's predicament by just looking at him through a car's window -- but the occurrence got me thinking: How does this dusty metaphoric window separate us in the realm of special needs from each other? 

The window of our community represents the capsule of self-reliance we tend to force upon ourselves, both as parents and as siblings of the special ones in our lives. Consistently, in myself and others, I see a mass of people with the same struggles who fight to overcome their pains and misfortune, perchance not with full trust in God, but instead with a downtrodden hope for help that leans into the inner walls of their own metallic cocoons. Some of us -- by fear, by anger, or by other reasoning -- choose to live this challenging life alone and shove ourselves into an unnatural place of acceptance towards seclusion. We feel nobody will ever help us, so why bother praying for others to shine God's light of grace on us when we don't expect anything of the sort?

Each of us have felt this way at least once in our lives, maybe twice, or perhaps on a daily basis, but all have felt the wrench of this pain pressing down on our forlorn little hearts. It's debilitating, sitting alone behind the window that was locked by our own hands, and it's a sour thought to consider when someone will ever unlock it.

On the other side of the window resides another concerning anomaly, a pedestrian that stands and observes but dares not lay their hands on the musty glass. They are those of us who pity: We stand and look through that window at the hapless soul within and think to ourselves, "How awful! I remember when I was like that. I wish there were something I could do to make this right." And yet, we step away from the encasement without a truly helpful word of aid or comfort. Whether we back away from the glass with higher priorities ahead, or we fear being sucked back into that lonely chasm for another round, matters not. For whatever reason, we veer off elsewhere from our acquiescent neighbors, and each is left to their own devices.

There is an undeniable brokenness between the bond that all of us share in the special needs community, a bond that we could never attach to one outside of the unique connection God has blessed us with. God has put us in these situations of adversity to draw us closer as His precious children! How glorious it is that God has blessed us with one anothers company, to share our woes and hurts with each other with a firm foundation in Him! But there's the dilemma we face: How are we to fit compassion and company between ourselves and the windows we have put up?

The answer lies at our feet, under our noses, considered the most powerful aspect of God and humanity, highlighted in 1 Corinthians and in the remaining pages of His word. Love is what we need most, for we can have the greatest intentions and still accomplish nothing of substance without love. Without love, we are not fit to roll down the windows of separation, nor are our neighbors strong enough to roll them down for us. To us, God says this:


God's boundless heart of love shines bright within us all, and it is a light that is meant to burst forth and illuminate the darkened souls and broken bodies of the world. God's love is a gift that is meant to be shared with strangers and brethren alike, a gift so grand as to break the bonds of grief and weariness, shred open the iron walls of our lonely cocoons, and break way to unity amongst His children. With the unbreakable compassion of our Father resting in the core of our very being, what is there to stop us from questioning our glass barriers? With love, God lends us His almighty strength, to reach for our and others windows of solemnity, and pry open the bonds that release into prospect and cherished harmony with one another.

Pray: Lord God, grant to me the strength to shine your light to those in need. Make me courageous enough to approach those who suffer like I have, to take their hand in love and show them compassion and grace as you have shown us.

Thursday, January 29, 2015

The Importance of Being Fit

"Pilates Training" Courtesy of Marin/freedigitalphotos.net
Open my eyes, that I may behold wondrous things out of your law. 
Psalm 119:18 ESV

I could begin with a laundry list of the current fad diets.  I could begin with a diatribe of fitness regimens certain to contour and shape your body in under ninety days.  Or, I could just begin with a simple thought that I had the other day when some friends and I were discussing our difficulties with carving out time to dig into God's Word.
What's our damage?  (A.K.A. What's our problem.)
I manage to carve out time nearly EVERY day to do my workout.  Some days it's twenty minutes, and others it's forty.  I manage to do my volunteer work for the International WAGR Syndrome Association.  I even manage to carve out twenty-five minutes a night to watch How I Met Your Mother with my husband.  (I had never watched the show when it was on television, but now that it's on Netflix, I can watch it on MY time.)
So, why WOULDN'T I be able to carve out time for God?
Wait, let me re-phrase that...

Why DON'T I?

There's always something important to do:  PTA/PTO, Scouting events, sports, jobs, second jobs, third jobs, church jobs, non-profit jobs, parenting obligations...do I need to continue?
But, which one of those events CREATED us?  Which one of those obligations SAVED us?  Which of those tasks REDEEMED us?
Not a one.
  
I realized the other day, that if I can stick to my workout routine because I need that serotonin rush, and if I can stick to my volunteer jobs because they are important to my friends and family here on earth, then I HAVE to stick to a daily devotional.
  
For what will it profit them to gain the whole world 
and forfeit their life?Mark 8:36 NRSV

We aren't going to get any second chances to live this life over.  When we die to our earthly bodies and we have our earthly life to answer for it won't matter if we got our kids to the game on time, or if we sat on a board of directors, or if we were even a Sunday School teacher.  God doesn't care if I got my blog post published on time.
God cares about the condition of our heart.  And if we aren't allowing Him time to communicate with us every day through our prayer time and devotional time, then we aren't giving Him any of our time.
For whatever was written in former days was written for our instruction, 
that through endurance and through the encouragement of the Scriptures 
we might have hope. Romans 15:4 ESV

If we aren't going to the daily Bread for our nourishment, then who cares if we are eating vegan, organic, or doing a 7-day cleanse?

But he answered, “It is written, ‘One does not live by bread alone, 
but by every word that comes from the mouth of God.’" Matthew 4:4 NRSV

So, what is the importance of being fit?   The importance is in the three letters that make up the word:  F  I  T.  Forever in training.  When we are in training we are studying, learning, memorizing, testing, questioning, discussing, ruminating...we are focused on the thing about which we are training.  Every day. 
If you can eliminate dairy, you can do a Bible study.  If you can eat organic and vegan, you can do a daily devotional.  If you can lose 100 lbs through exercise and diet change, then you certainly can pray each day to God.
Don't let yourself be fooled about what your can and can't find time for.  

Pray:  Heavenly Father, I know that I need to be in your Word and be spending time in prayer with you everyday.  I have NO excuse for neglecting you when you are always there for me. Open my eyes to how I spend my time, and tell me when I start to stray.  Lord, I NEED YOU!  And I KNOW that nothing should take priority over my time with you.  Please, forgive me; today I start anew.  


Note to the reader:  I personally use She Reads Truth to remind me daily to read God's word.  It's an app on my phone and it sends me a reminder if I haven't read scripture yet by 10:00 AM.  Another great app is GoTandem, which I only heard about recently, but sounds wonderfully helpful!

Of course, you can also read the Comfort In The Midst of Chaos devotionals no matter where you are through our FREE Snappin' App, available at both the Google Play Store and the iTunes Store.

Wednesday, January 28, 2015

Finding an Oasis in the Desert


Let us not become weary in doing good, 
for at the proper time we will reap a harvest 
if we do not give up. Galatians 6:9 NIV

2014 was a very difficult year for us, and despite our hopes, 2015 has continued to be hard for us and so many we love. Because these circumstances have gone on for so long, I often feel like the Israelites must have when they wandered in the wilderness for forty years. A very wise friend has encouraged me time and time again with the words, "Do the next right thing." And I have tried, even when I felt like my prayers were bouncing off the ceiling, even when I wasn't sure where my next meal was coming from, even when I was terrified beyond the ability to act rationally about much of anything.

Fear and anxiety have been near-constant companions, but I followed the sage advice of my friend and kept trying to do the next right thing. It has finally paid off. In the past week, I have had a breakthrough. Every devotional I read, every Scripture verse I'm directed to, and most of the conversations I've had have had the same theme: Don't give up. Keep praying. Persevere in prayer.

What else am I to think but that victory is nearer than ever? I have given up too many times before on this special needs parenting journey. I have failed to pray through to the breakthrough, and I have probably delayed its coming.

Not this time. If you need me, I'll be the broken special needs mom praying with everything in me, doing the next right thing, believing for our every need to be met---medically, financially, spiritually, and anything else that comes our way. I'm not going to give up this time. I'm going to keep praying, keep doing the next right thing until I see the results.

Pray: Father, please help me to keep praying through until I see Your answers for my family. Please forgive me for the times I haven't persevered and have given up too soon. Thank You for giving me an oasis of Your Word in the desert this week. Help me to always do the next right thing. Amen.

Tuesday, January 27, 2015

Why This Emptying?

For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake... (Philippians 1:29 ESV)

Jillian* stares at the ceiling and sobs quietly as we read to her.  A year ago, she had been an active and self-sufficient professional woman living on the coast. Now, she passes the gray Midwest winter days recumbent in a small room in her aging parents’ home.  One who has spent many years in a career dedicated to supporting the health and mobility of others, she finds herself unable to heal her own physical challenges. She’s a strong Christian, but she wrestles with understanding God’s purposes in allowing her body to betray her as it has.  And it is that search for answers that summons my husband and me to her bedside.

It is an uncomfortable position to be in—sitting able-bodied next to someone suffering and trying to convince her that her pain is God ordained and for her own good. I open Octavius Winslow’s Morning Thoughts entry for the day, and almost with embarrassment I read to her, “The Lord has been leading you along a path of painful humiliation. You have been emptied; He has brought you down and laid you low, step by step, and yet, oh, how wisely and how gently, He has been leading you deeper and yet deeper into the valley.” He anticipates her questions and asks and answers, “Why this emptying? Why this descending? To bring you into a union and communion with Jesus in His life of humiliation.” But why she and not I, and why so disproportionately among the souls I met in Ethiopia last fall? I don’t have an answer. The next lines lift my own spirits: “Is there a step in your abasement that Jesus has not trodden with you, and trodden before you? Is there … a cross he has not borne, a sorrow that has not affected him?” These words I can recite with conviction.

In the book of Philippians, Paul echoes Winslow’s words.  In chains himself, he sends a letter of encouragement and instruction to the young congregation of believers facing persecution. He frames the Philippians adversity as a privilege “granted” to them not only to believe in Christ, but to “also suffer for his sake (1:29)." Of his own suffering he writes, “I know that through your prayers and the help of the Spirit of Christ this will turn out for my deliverance (1:20)," acknowledging that in addition to advancing the gospel, it is serving as a sanctifying work. Of the work the Lord is doing in his life and among the Philippians, he expresses his confidence that God, “will bring it to completion at the day of Jesus Christ (1:6)."  

Jesus himself models the way of the believer—emptying himself, laying himself low, “becoming obedient to the point of death,” then being exalted by the Father. And so, recognizing the great reward—gaining Christ, Paul embraces suffering and writes, “I press on toward the goal for the prize of the upward call of God in Christ Jesus (3:14).” William Gurnall says of that climb, God is at the bottom of the ladder, and at the top also, the Author and Finisher, yea, helping and lifting the soul at every round, in his ascent….” Along the path, the Lord ordains trials and even suffering meant to form us in Christ. But he is also our source of strength and consolation. 

“Rejoice in the Lord always; again I will say rejoice,” Paul encourages the Philippians, “in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus (4:4-7).”  Her pain and anguish are real, palpable, as we sit with her, and I worry the prescription to rejoice seems trite. But as we read the Psalms and sing a hymn, and she is reminded of his goodness, the sorrow lifts, and her heart is encouraged.

Prayer:
Father, whate’er of earthly bliss
Thy sov'reign will denies,
Accepted at Thy throne of grace,
Let this petition rise.

Give me a calm, a thankful heart,
From every murmur free;
The blessing of Thy grace impart,
And let me live to Thee.

Let the sweet hope that Thou art mine
My life and death attend;
Thy presence thro' my journey shine,
And crown my journey’s end.
Amen.

(Anne Steele, 1760)
*name changed

Monday, January 26, 2015

Words Matter


“Sometimes it (the tongue) praises our Lord and Father, and sometimes it curses those who have been made in the image of God. And so blessing and cursing come pouring out of the same mouth. Surely, my brothers and sisters, this is not right! Does a spring of water bubble out with both fresh water and bitter water?” (James 3:9-11)



Three hours and thirty-nine minutes.

That’s how long it lasted.

At the beginning of every year, our home church engages in a twenty-one day period of spiritual engagement with prayer and fasting.

Everyone chooses a food item, a hobby, an interest, - something personal and relevant to that person, and then abstains from it during the twenty-one days.

Some people abstain from solid foods; others choose a particular item or food group. For example, my wife gave up all bread and products with bread for twenty-one days.

I personally offered to fast from broccoli, but apparently that idea lacked muster with the wife. If she was giving up bread I wasn't going to skate by with giving up broccoli.

Can I be honest? I hate fasting. I really hate it. If you have seen my profile picture, then I’m sure you understand.

Other folks chose to fast from television, entertainment, caffeine, alcohol, coffee, the Internet, or Facebook and social media.

I decided that I would attempt something that I knew would be incredibly difficult and challenging, but not prevent me from eating chicken wings with the fellas on Thursday night. After all, that Thursday night was a ministry event. I had to take one (or twenty) for the team, didn't I?

I determined that for my twenty-one days, I would fast from saying anything negative, cutting, biting, or complaining.

Not a negative thought or word over my lips for three weeks.

You see if sarcasm and cynicism were spiritual gifts, then people would be exclaiming, “Surely that man is anointed!”

If I had lived in ancient times, people would be touring Grecian ruins today listening to a tour guide say, “That’s a statue to Jeffrey, the mythological god of sarcasm.”

I started my attempt on a Sunday morning. After all, what better place to be than in church when you are abstaining form negative thoughts?

Three hours and thirty-nine minutes. It was over.

We were home from church and I was mindlessly scrolling through Facebook.

I know, right? Huge mistake!

I had passed through the usual 35 pictures of cats, my usual biggest source of sarcastic wit, without making any comments.

I blew pasts three posts telling me to “Like” Jesus and “Share” him with 10 friends to receive my miracle in the next 24 hours, and I still held my tongue.

Then I saw it.

A fellow supposed follower of Christ had posted something, attacking someone else who had an opposing view. It wasn’t so much his argument, it was the venom and bile he spewed in his response.

He eviscerated the other party, and in doing so, furthered the stereotype people have of Christ-followers.

There was no love, no attempt at grace, and certainly no attempt to even understand or consider the background of the other party.

Just outright condemnation and cruelty. A verbal attack with an onslaught of words.

“What a jerk! What a legalistic, holier-than-thou, self-righteous jerk,” I exclaimed.

Uh-Oh....my own fast was over.

Now who was the jerk? I sounded like the person who prompted me to make the comment in the first place.

I should have stuck with broccoli.

Words matter. Words have the power of life and death, especially with our children and spouses.

Parents your words contain the power of life and death. Parents, you have got to be speaking words of life over your kids every day. Your kids will believe whatever you say about them. Your child will become whatever he or she believes. And what they believe about themselves will be determined by what you speak over them.

They will become whatever the voices they hear say about them. So make a point, every day, to speak positively and affirm your child.

I am constantly, with every opportunity I have, speaking positive words of affirmation and life over my son. I am always telling him how proud I am to be his dad and how honored I am that God chose him to be my son.

We have a rule to never speak negatively about him to others, or in front of him either. I constantly tell him how much I love him the way he is and I wouldn’t wish for any other boy but him.

This journey as a parent of a child with special needs is so grueling, and gives us ample opportunity, at every turn, to be negative, joyless, and careless with our words.

Choose to give life with your words.

Or you may end up having to give up chicken wings next time.

Pray: "Father give us eyes to see as you see, and hearts to offer grace as you offer grace to us. And in all things, help guard our minds and words."


Saturday, January 24, 2015

"Are You Serious?" Awards - Volume XLI: The Somebody's Watching Me Edition

It will only be a matter of time.  As we read of student abuse and inappropriate class conduct, we edge ever closer to the distinct possibility of cameras in the classroom.  It has also been suggested that police officers wear video monitoring devices in an attempt to appease those crying out for criminal justice.  This increases the likelihood of others working with the public also using such devices to monitor the behavior of on both sides of an interaction.

Nevertheless, as this week's winner demonstrates, many in the teaching professions are fighting video surveillance with every fiber of their being.

Recently, a school district in New Jersey notified a mother that they would no longer tutor her 2 children who have a chromosomal disorder unless she removed the "nanny camera" she had recently installed in her home.

Are you SERIOUS?!

Photo Image Courtesy of 123rf.com
The mother has stated that she installed the video camera, not to monitor the therapists tutoring her children, but to keep an eye on her kids' behavior, because they are prone to act up.  She wanted to assure that everyone was safe.  In addition, the mother was completely up front about the presence of the nanny cam, notifying the instructor that it was there before a session even took place.

Even so, the mother now lives in fear of her children losing services and falling behind.  She was sent a message from the school district telling her that therapists and tutoring would no longer be provided if she continues to record sessions by video.

This brings up an interesting, multifaceted conundrum.  To be completely frank, parents these days tend towards the side of being "helicopter parents."  What instructor or therapist would want to subject themselves to being micro-managed or continually critiqued by an overly protective parent?  I can certainly appreciate that point of view as I watch some of my peers "majoring in the minors" when it comes to their kids.

On the other hand, these tutors work for this mother in her home.  A good parent would naturally want to do their very best in assuring their children are behaving appropriately in these sessions and receiving appropriate treatment by the tutors.  Furthermore, what if this parent wished to review these tutoring lessons, working together with the team, reinforcing what the children are learning?  With the adversarial treatment of the school district, all possibility of working together has now been removed.

What do YOU think?  Are you a fan of cameras in the classroom?  Why or why not?  Please leave us your thoughts in the comment section below!

~ Barb Dittrich

*Read more at  New Jersey School District Threatens to Stop Sending Special Needs Therapist After Mother Installs Nanny Cam.

Friday, January 23, 2015

The Dreaded Call

"I praise you, for I am fearfully and wonderfully made.
 Wonderful are your works; my soul knows it very well." ~Psalm 139:14

"Mrs. Parsley, do you have a minute to talk about your son?"

It was the call that I dreaded. I tried to live in denial of this truth but it was lurking quietly around the corner waiting to confront me. I watched this six-year-old boy for three years now struggle to sit still; even for a second. Then there was the constant dis-tractability that we battled daily. I wondered if this would ever end thinking, "maybe he will grow out of it?"

I wondered if he truly understood what I was requesting or was blatantly disobedient. This is something we as parents battle when our kids have special needs like SPD, Autism, or ADHD. We wonder if they are disobedient or having difficulty comprehending or something else all together.

Most children want to please adults so most children generally want to be obedient. This boy had such a tender heart and desire to please us but there was a disconnect. There were things it seemed he did not understand or maybe it was that he forgot too quickly.

But then the call came that crushed my heart. I knew I was dealing with another child in the special needs realm. I already knew it deep in my heart but I was hoping my denial would keep it covered; at least for a while. Now that others are seeing it as well it is time that I deal with it and not feel ashamed.

Psalm 139:13 says, "For you formed my inward parts; you knitted me together in my mother's womb." I must believe these truths. You see when my first child ended up with special needs, which were not discovered truly until she was around his age, I felt much shame. I felt like it was my fault.

 I tortured myself with thoughts like:


  • Maybe I did something wrong during pregnancy?
  • Maybe I ate the wrong things?
  • Maybe I should not have gotten the vaccinations?
  • Maybe she has this because my body was ill when she was birthed?
But this son of mine was adopted. And these verses reminded me that just like it was not my fault, it also was not his birth mother's fault because God is sovereign. God knits us together in our mother's wombs. God makes us fearfully and wonderfully. When we have a special need, that makes us different, it does not make us less because the God of the universe who created all things knit us together. We did not have to live but He chose to give us life. He is the one who gives us breathe so if we are here breathing we have a purpose for His glory.

My prayer today is that we remember this through the many difficulties we face in this present age. May we also remember that this present age is temporary. Sooner than we can imagine it will all be gone and we will have eternity in Heaven where there is no sin and all wrong things will be made right. While we wait for that we can trust He has things under control.

Where have you struggled on your journey with special needs? How can we pray for you?

Pray:  Father, thank you that we are fearfully and wonderfully made. Thank you that you are in control! Help us to trust you in all things. Remind us of what truly matters. Keep our eyes fixed on you.


~ Angela Parsley ~

Thursday, January 22, 2015

The Ultimate Ambulance Chaser

Photo image courtesy of 123rf.com
Don’t overlook the obvious here, friends. With God, one day is as good as a thousand years, a thousand years as a day. God isn’t late with his promise as some measure lateness. He is restraining himself on account of you, holding back the End because he doesn’t want anyone lost. He’s giving everyone space and time to change.  2 Peter 3:9 MSG

Lawyers are often irreverently referred to as "ambulance chasers;" as though they go chasing down people who may have a reason to hire a lawyer and seek some sort of justice for whatever put them in the ambulance to begin with.  

But I think the true Ambulance Chaser; the Ultimate Ambulance, Chaser is God. 

In 2 Peter we read that, while in our minds things often don't happen quickly enough; to God, the timing is perfect.  We learn that God may even delay certain things "coming to us" because it will be better for us in the end, and hopefully will spare our souls.  He wants to see everyone saved, and for some people, it is only in their most desperate hour that they will turn to God, repent, and cry out to him. 

Isn't that amazing?  God loves us so much, and wants us to have a relationship with him so badly that he will design our lives to TRY to save us.

Are you thinking to yourself, "But we aren't all sick, we aren't all in an ambulance because of a critical health issue..."?

Maybe we aren't all sick according to health standards, but we ARE all DYING.  We are all guaranteed that some day we will die.  And, spiritually, we ARE all sick...we ALL fall short of the Glory of God (Romans 3:23). 
Since everything here today might well be gone tomorrow, do you see how essential it is to live a holy life? Daily expect the Day of God, eager for its arrival. The galaxies will burn up and the elements melt down that day—but we’ll hardly notice. We’ll be looking the other way, ready for the promised new heavens and the promised new earth, all landscaped with righteousness. 2 Peter 3:11-13 MSG
Everything here today may well be gone tomorrow...

No wonder God is chasing us in our critical condition...He is patient beyond comprehension, but he can't hold back the second coming forever.  Our world is getting worse, and FAST.  God wants us to turn to him as soon as possible.

Last fall, our daughter was stung by a bee at school.  She'd been stung before and nothing major had ever happened, but this time she swelled, and by "swelled" I mean her face was even turning purple.  The school nurse quickly assessed the situation and realized she needed to deliver epinephrine to avoid having our daughter go into full blown anaphylactic shock.  I was working, so when I got the call, I knew that I was closer to the hospital than to her school.  Since she was being transported by ambulance, I determined I would meet them there.  

As it turned out, I almost beat the ambulance to the hospital.  I walked into the ER just shortly after my daughter and husband had arrived with the paramedics.  I was there, just when she needed me most.

Maybe that's a better description of God.  Yes, I was chasing the ambulance; but at a distance which made it impossible for my daughter to see me there.  However, I knew what was going on, I knew where she was heading, and I made it there along side of her to comfort and love her.

Pray:  Heavenly Father, I know that I'm incapable of being holy enough to live in Heaven with you.  I need your son, Jesus to be my Savior and Redeemer.  Please help me to remember that your timing is perfect and that you are working out the details of my life so I will be yours.  When I get out of line, Father, forgive me and pursue me...Chase me down.  Amen.

~Tammie Hefty