Friday, February 28, 2014

RARE DISEASE DAY -- The Many Faces of Rare




 QUIETLY turn Your eyes to me and be compassionate toward me
    because I am lonely and persecuted.
 ~ Psalm 25:16, VOICE ~

TODAY is World Rare Disease Day!

What’s so rare about rare disorders?  What’s so different about the people living with them?  Just like any other human on the face of the planet, those living with a diagnosis that affects less than 200,000 people nationwide are looking for love, acceptance, and a good quality of life.  Lord willing, they wake each morning, just like any other person.   

Unfortunately, that’s often where the common life ends, and the rare begins.

In our house, rare disease may look like the top 2 shelves of your linen closet being occupied by $15,000 – $20,000 of recombinant clotting factor along with butterfly needles, 10 cc syringes, saline flushes, alcohol swabs, gauze pads, bandages, tourniquets, and the ugly Sharps disposal container.

It may look like having to get an IV before school every other day, just to prevent spontaneous bleeding episodes.

Rare disease may look like a call from the school because there is an episode during class that needs to be treated or looked at right away. 

While rare disease may seem like it’s not even there one day, it will turn your world upside down the next.  Rare may have you beginning your day as usual, and finding yourself in the hospital, fighting for your life by dinner time.

Although all your friends get their physicals once a year or only see the doctor when they are ill, rare disease has a whole host of specialists, not all necessarily communicating well amongst each other.  Doctors and therapists are part of your monthly, often weekly schedule.

Science advances and ushers hope along with it.  But with the high financial, emotional and physical toll of rare disease, you had better have your hope pinned on something much greater.


Or rare disease might look something like this.  Your toddler gets an ear infection.  The pediatrician prescribes an antibiotic.  The next night, you find yourself in an emergency room, your child covered in frightening purple splotches and rash.  The doctors inform you that this allergic reaction she is having is so severe, if she were ever exposed to penicillin again, no epinephrine or other attempt at rescue would save her.

Suddenly, personal immunity and typical infections are something potentially lethal to your child.  Plans are put in place to use an immune tolerance protocol inpatient at the ICU, should it ever be needed.  Something like a strep culture makes your heart race.  Even your pediatrician dreads such an infection in your child.

For the remainder of your child’s life, there is an undercurrent of stress related to general health that typical families not living with erythema multiforme are able to avoid.

These are just 2 of the faces of rare disease, and they are my story.  Two of my 3 children live with the challenges of rare disorders, as do nearly half of all the families our ministry serves.  Diagnoses like cerebral palsy, mitochondrial disease, juvenile diabetes, epilepsy, spina bifida, celiac disease, and fragile X syndrome all fall under this umbrella.

Families like us may not even have a treatment for our child’s diagnosis, let alone a cure.  We are financially, emotionally, physically and spiritually overtaxed.  We love much, and we try to keep our fears at bay.

This, THIS is why Snappin’ Ministries gets behind World RareDisease Day every year with increasing measure.  We are children of God, just like everyone else.  Ending the isolation of raising a child with any sort of special need is a core piece of our organization's commitment.  That’s why we can get behind a slogan like this one adopted by NORD (the National Organization for Rare Disorders), "Alone we are rare, together we are strong". 

Our prayer is that today, each person who touches this ministry will also reach out to touch the people around them with just a simple “Rare Act of Kindness”, spreading the basic information about rare diagnoses.  Small steps to build awareness will transform hearts and minds over time.

We each leave a ripple in the pond in which we are dropped.  Won’t you please make a ripple for Rare Disease Day today?

PRAY:  Thank You, Father that You have uniquely made each person whom You dearly love.  Energize us to band together today for those fighting the battle with rare disorders.  Make us remember to spread awareness to just our little circle of people around us.  And THANK YOU that You give us hope beyond any treatment or cure for our children.




Snappin' Ministries encourages YOU to print and/or share this "Rare Act of Kindness" card as you do a kind gesture for another person today.


*All facts and statistics on the "Rare Act of Kindness" card is provided through NORD.  Learn more about the global Rare Disease Day campaign at http://www.rarediseaseday.org/









Thursday, February 27, 2014

Don't Let Anger Destroy What Love Has Built

"A fool gives full vent to his anger, but a wise man keeps himself under control."
Proverbs 29:11

No parent would ever forget their child's day of surgery. I remember every surgery clearly, but the clearest in my mind is Namine's second heart surgery. I was angry. No, that isn't right. I was furious. I wanted to curse God, but there were no adequate words – the emotions were just too large, too overwhelming. So I did what any fool husband would do: I took it out on my wife. I got angry at her because I couldn't get angry at God. He could hear me, perhaps, but He wouldn't respond – not immediately, anyway. I couldn't know for sure that I had hurt Him; I could know that I had hurt my wife – only with words, but words are powerful too. Anger makes us selfish and childish; juvenile, stupid, and petty. With a savage joy we destroy all we've built, and all too often we only realize what we've done when it's too late. And then, when we’re left alone to survey the ruins, only then, we realize that we have pushed away everyone who might have helped. In hate – even towards ourselves and no one else – we ruin lives.

Fortunately, my wife has graciousness and forgiveness to match. I am fortunate in having her, because I don’t deserve a single bit of the kindness she’s shown me. (These words, too, are paltry, not nearly enough to describe how in awe I am of her love for me.) It took me a long time to come to the realization of what should have been obvious: I have no control over some things in my life. It seems like such a simple concept, but when faced with the possibility of losing a child, who could accept such a thing? You are forced into making a choice, even if you don't recognize that it is a choice. You can either become a bitter, angry person, or you can accept it, finding a calm center in the midst of this crazy storm that has become your life.

Holding onto anger will not only poison you; it will poison everything you love. It would be the basis for divorce, creating even more anger and blame; for distancing yourself from your child, who would in turn also grow to be angry and bitter. It would be the start of a thousand fights, a thousand blames, and in the end, nothing but a thousand regrets – all for the satisfaction of a single moment.

I don't want to live like that. I want to love my wife and child, and I want them to love me. And they do – for all my endless failings. But love sees past all that and simply accepts us as we are. Even though Namine no longer has a tracheostomy, even though she’s rid of her g-tube, life still pitches us headfirst into a hundred storms. But we know we've been through worse, and we've come out all right. Whatever life throws at us – we know we can beat it, as long as we've got each other. Most importantly, we have God's promises.

I have said stupid things, and I have done stupid things. Only rarely can I say that I am proud of myself; but I am more proud than words can say of my family. I don’t deserve their love for me, but I am ever so grateful for it. I am truly blessed, more than I could ever hope to articulate, in the loving wife I have in Jessica, the beautiful daughter we have together in Namine. They add to my life and give it meaning and purpose. Everything we've been through together has made us stronger. Brought us closer. Through a crazy plan – of God’s, certainly not ours – we've been made into more of a family than we would have otherwise been.

As I was saying in the beginning, we would not be the same without our experiences. They define us, after all. But Namine is more than merely a child who was born with disabilities. She has them, but she is not defined by them. Similarly, we have these experiences – hospital visits, surgeries, and more – but we are not defined by them. We, through God’s help and each other, rise above them and do more than survive. We live. We love.

PRAY:  Holy Spirit, only by Your power can we love as You love, forgive as You forgive.  Thank You for the gift of family.  Help us to treasure one another beyond our mistakes.  Remind us that we are Your gift to each other to face life storms.

~ Paul Eiche

Wednesday, February 26, 2014

Gerbils, Kittens, and the Bible


The name of Yahweh is a strong tower; the righteous run to it and are protected.
Proverbs 18:10 HCSB


This morning I awoke to my daughter’s cries for help. She has a bit of a flair for the dramatic, so I hurried into the den even though I thought the matter couldn't possibly be life or death.


I was wrong.


The gerbil cage was on the floor in pieces. There was bedding and food everywhere. I slowed my pace a little, not sure of what I would find. Gerbils in pieces? Gerbils missing? (The thought of either was horrifying.)


If I had been more awake, I would have realized that our kittens, the culprits in this fiasco, were still circling the mess. As I got closer, I realized that both gerbils were alive and apparently unharmed. They had been sleeping in their favorite place to bed down---an area of the cage that is enclosed and separate from the rest of the cage except for the hole where the tunnel hooks to it---and they were still there, shaken, but not leaving the relative safety of that box despite the now-open doorway.


I was amazed that they had stayed put until we woke up to rescue them. (How none of us heard the crash, I’ll never know.) But there they were, patiently waiting.


Then God reminded me of Proverbs 18:10, and I meditated on it while I cleaned up the mess. God seemed to whisper to my spirit. How many times would you be better off being still and waiting for Me to take care of your problems? Run to Me and rest in Me. I will protect you and keep you safe.


It’s true. Too often I try to take care of my problems themselves. The storm rages all around me, and I run headlong into it, assuming I can do something. I can’t.


Like the gerbils who were powerless against the almost-grown kittens, I am powerless against much of the circumstances that come against me. I need a rescuer, a safe place to run.


Yahweh is my strong tower.


PRAY: Father, help me to let go of the illusion of control. I want You to handle all my troubles and calm my storms. I trust You, and I want to rest in the strong tower You are for me. Amen.

~ Jennifer A. Janes

Tuesday, February 25, 2014

Take Rest in the Cave

www.bibleplaces.com/elahvalley.htm
I cry aloud to the LORD; I lift up my voice to the LORD for mercy. I pour out my complaint before him; before him I tell my trouble...Set me free from my prison, that I may praise your name. Then the righteous will gather about me because of your goodness to me.  Psalm 142:1-2, 7 NIV
Let me set the stage...young David was to become king, and his life was threatened by a jealous leader.  In 1 Samuel 22 we find him taking refuge in a cave; the Cave of Adullam.  We learn that he composed a song to God while he was there; it's called Psalm 142.   
Listen to my cry,
    for I am in desperate need;
rescue me from those who pursue me,
    for they are too strong for me.

Set me free from my prison,
    that I may praise your name.
Then the righteous will gather about me
    because of your goodness to me.

Psalm 142: 6-7
I think we all can learn a very valuable lesson from King David while he briefly took rest in the Lord.

How many of us; as parents, as parents of children with special needs, as employees, as volunteers, as sons, daughters, brother, sisters, aunts, uncles, wives, husbands... How many of us need to take refuge in the Cave of Adullam?  I know that I do.
...And there is no shame in that...
Pastor Clark Tanner, in a sermon titled "The Cave of Adullam," said: 
How many times in the history of God's people...has it been proven that we grow the most...after His Spirit has removed all distractions from us; taken us out of our comfort zone...and taken us to a humble, lonely place, where only we and He know what's going on in our hearts?
In a world of "Go, Go, Go" and Facebook, Twitter, and Pintrest; in a time when we are expected to be all things to all people, (not to mention look good doing it!)--how many of us has burned ourselves out by never humbly saying, "I need to take a break."  How many of us have kept going while feeling like we were failing miserably in EVERY part of our lives?  That is our prison.  David asks to be freed from his prison so he could praise the name of God. 
I have often found myself adding "just one more thing" to my list of responsibilities because that "one more thing" seems so small and so non-time-consuming that I assume it will make no difference to my daily life, and that I would look lazy by not taking on the task.  
But God understands; we are the humans He created, and He wants us to take time for Him.  He requests us to go to our own caves, so we may focus on Him; to allow His Spirit to minister to us and rejuvenate us so we may be capable of manifesting His Will for our lives. 
God does not ask us to show Superhuman strength...He asks us to show our humanness so His Superhuman strength may be evident in our lives.
Today, I had that guilty-mom feeling.  My mother and father-in-law have my daughter over for the afternoon and a sleepover.  I did some cleaning, ran some errands, and then sat down in the recliner with the jar of JIF Natural Chunky and some celery. 

And as I hear the housework calling me...as I see the dirty floor, the folded laundry that could be put away, and the cluttered dining room table...I also hear God saying:
I'm here...Visit with me...Why busy yourself with those things that make you look good to others when it means I never see you here with me?  
Pray:  Lord, let me take rest in you.  Help me to lose myself in the Cave so I can feel your Spirit come upon me and inspire me to carry out your Will.  

--Tammie Hefty
 

Monday, February 24, 2014

The Family Tradition

Photo by Becky Davidson

"For you created my inmost being;
    you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well." 
(Psalm 139: 13-14, NIV)


I fell in love with the game of basketball when I was barely old enough to hold the ball between my hands. I carried that old worn leather ball around with me everywhere I went.

Everyone in our small rural town in Tennessee knew my father simply as “coach.” He spent decades coaching hundreds of boys and girls in basketball for our town’s only high school.

Needless to say our family lived and dreamed basketball. Growing up I was always either in a gym, or playing on our backyard court where my father had installed a goal on a telephone pole.

My dad had been a star player in high school himself and more than anything I wanted to be like my dad. There is something inside every little boy who measures himself by his dad’s achievements and I wanted to follow in his footsteps.

One of the most joyous, and brutally challenging seasons of our life was when I played for him and he coached me in high school.

I proudly wore number 22 and I had almost every characteristic you could want in a star player. I had passion, energy, devotion, and ball smarts. I had an uncanny ability to manage the game. I loved the game, and I had terrific leadership skills.

There was only one thing I lacked to make my game complete.

Talent. 

When the game was on the line and you needed someone you could count on to make the game winning shot, well let’s just say you hoped I just stayed out of the way. 

My dad had never pushed me to play basketball and he had never imposed his love for the game on me. It just came naturally out of being his son. But his love for me was never predicated or dependent upon how well I played the game that he had excelled at personally. He loved me because I was his son; it had nothing to do with my basketball ability.

We still live in the same town today. And now my own son is a freshman at that same Cookeville High School.

This morning my wife was dressing him for school. His special education class was going on a field trip to the Special Olympics for volleyball. Even though he physically cannot participate, he enjoys riding on the bus and hanging out with his class. As she pulled his “uniform” shirt over his head, I was startled to see he had randomly been assigned my old number 22. I think God was in that moment, as if He did that just for me.

When we first learned we were going to have a boy, I daydreamed and fantasized constantly about someday teaching my own son the game of basketball. I would plan out what skills I would teach him first, and how I would methodically mold him into the superstar I never was. All while he wore the family number 22.

My dream was to coach my son just as my dad had coached me. I even went so far to purchase a full sized basketball goal and had it in the driveway ready and waiting.

But autism and cerebral palsy had other plans. With his special needs I quickly realized those dreams would have to die. There would not be three generations of Davidsons playing basketball in the driveway together.

At first it was difficult coming to terms with laying down those dreams. Like any special needs dad, it’s hard to emotionally come to the point where you realize the dreams, goals, and plans you had for your child aren’t going to happen the way you hoped. But whose dream was it anyway? It wasn’t God’s dream.

This is where the choice happens for dads. You can choose to spend the rest of your life wallowing in the “why” and grieving the dead dreams. Most men choose this route. At the end of their journey they find they have been following a dead end street that goes nowhere.

Or you can go down the road marked “how.” How are we going to rise above this situation and still find the glory and purpose that God has in this? How can we use this “different dream” to still find fulfillment and joy? That is the road I have chosen.

My son will never win an NBA title. He will never be a Super Bowl champion. For that matter he will never write a symphony, paint a masterpiece, or accept the Nobel Prize.

He will also never do anything that makes me love him anymore than I already do. I love him because he is my son.

Period.

I made him. I created him. He was formed in my image. And for that, I love him unconditionally. Nothing he can ever do will make me love him any more than I already love him.

If all he ever does in life is just be my son, that is enough. My love for him is unconditional.

I got that from my dads.

Not just he one here on earth, but the One who made all of us as well.

Why do we think we have to do something to earn God’s love or make Him love us more than He does? He made you, He created you in His image, and He knit you together in your mother’s womb. 

Don’t let anyone try to lie to you, try to deceive you, or try to persuade you otherwise. 

Nothing you ever do will make God love you more than He already does now. He loves you because you are His son or His daughter. 

Period.

God is not punishing you. God has not abandoned you. God has not forgotten you. God’s love for you is everlasting, never failing, and never ending.

Whether you can hit a jump shot or not.


PRAY: "Father thank you for loving us just the way we are, and thank you for loving us too much to leave us this way. Continue to show us Lord that your dreams for us and our children are so far greater than those we have ourselves."


Saturday, February 22, 2014

"ARE YOU SERIOUS?" AWARDS - Volume VI


I often wonder if we create a sort of an unsolvable Rubic's Cube with some of the discussions we have at times.  What I mean is that we engage in conversations where there isn't necessarily a right or wrong answer.  We attempt to solve a problem that is, well, unsolvable.

People First Language seems to be one such puzzle!

Oh, I have written before on this conundrum.  Back in 2009, I discussed semantics in Don't Major in the Minors.  I even discussed the challenge last year during the final week of Lent in Who Do You Say That I Am?.

But the circular conversation persists, and I suppose I had better resign myself to the fact that it will always be a part of the national dialog when it comes to diff-abilities.

Because people are unique individuals and want to be treated as such.   

This week, in both a private leadership group and on the blogosphere, the topic has popped up again.  One post that dates back to 2012 maintains Person-first language doesn't put people first, it makes them invisible. Reading the author's adult point of view is fascinating.  He has the closely held belief that separating him from his autism is akin to removing part of his identity.  In his estimation, this type of language stems from a faulty mindset.  The second post, recently written by a mother, proclaims My Son's Disability Defines Him (and why I'm okay with that).  Beautifully crafted, the author describes how her son's diagnosis, and all that comes with it, is woven into the fabric of his life.

"I want him to say disability and hear dignity." she envisions.

Yes, YES!

Except then we also have people like my son, who will slug you if you call him a "hemophiliac".  (Which is NOT very hemo-friendly behavior, I might add.)  All joking aside, he has told me that, "When people call me that, I feel like I am being put in a demeaning classification of people that have the most disgusting disease ever.  I want people to see me, not my disease first.  I have hemophilia -- It doesn't have me!  People using that term make me feel bad about myself."

My position would be that ALL of these individuals need to be heard. 

So often, we try to cluster people in categories.  I would maintain that when it comes to using proper language, those clusters don't work.  We need to get to know people for who they are and respectfully ask them what their language preference might be.

And so, this week's award goes to PEOPLE FIRST LANGUAGE.

 Are you SERIOUS?!

One size does NOT fit all, so we would do well NOT to judge others or think less of anyone because of their linguistic preferences.  Instead, invest in the beauty of personal relationship with people of every sort.

Fred and Ginger said it well back in this 1937 classic... 
 
 
 (DON'T TRY THE ROLLER SKATE DANCING AT HOME!)

Friday, February 21, 2014

The Gift of A Unique Opportunity to Love Well


"But God showed his great love for us by sending Christ to die for us while we were still sinners" (Romans 5:8).


When you have the opportunity of raising a special needs child you have more available occasions to express true love than others. It can be easier to love a compliant child than a ten-year-old throwing a temper-tantrum in the middle of Walmart's floor. Anyone can love a cute and compliant child easily but when it gets tough can you still love unconditionally?

Truly if we look at ourselves closely, are we not also both of those kids toward our Heavenly Father from time to time? Are we not the kind of kids who act compliant and cute at certain times and then at other times throw full blown temper tantrums?

You see, Jesus came down to us. He sacrificed everything, even to the point of death on a cross to save us even while we were throwing fits and wallowing in sin. This is true love.

True love does not look to get something back from the other person, true love just pours itself out.

True love does not work as an exchange program, if you do this for me, I will do that for you.

True love willingly and painfully dies to all selfishness, it is not self-focused but instead God-focused.

When you have a child with special needs you are getting the opportunity to love like Christ and it is that kind of love that moves mountains. That kind of love changes things. It shines His light brightly to a watching world. It keeps you focused on Him because He is the ultimate source of love. He is the one who poured out everything because He thought you were worth it. Now as a parent, it is your turn to do the same thing.

When you have a special needs child it can cause a strain on a marriage but when you are living true love, by focusing outwardly on others rather than yourself you can and will get through. The One who is love will empower you to love sacrificially.

After all, Love is patient and kind. Love is not rude or irritable. Love never gives up! Jesus is all of these things toward us. He doesn't get impatient. He is always kind. He is not irritated with us. He is not rude to force His way. Most of all He never ever gives up on those that are His! He is the visible image of the invisible God! He is beautiful! He gives you, as a parent of a special needs child, more opportunities to experience this kind of love.

Prayer:
Father, help me to love well because you first loved me. Help me to pour out your love on others because I am so filled with the source of Love from you. Help me see every sacrifice in my life as an opportunity to love well. Help me love like You.

~Angela Parsley

Thursday, February 20, 2014

For Love of The Single Parent

Real religion, the kind that passes muster before God the Father, is this: Reach out to the homeless and loveless in their plight, and guard against corruption from the godless world.
~ James 1:27, MSG ~

I have often joked that upon arrival in heaven, I will promptly ask God why he did not issue parents 2 more  hands with the birth of each new child.  Cooking, cleaning, feeding, diaper changing, and working outside the home all took on new meaning the day our firstborn arrived on the scene.  I never felt the true pressure of being a juggler until I became a mother.  That stress became exponentially greater when my husband and I found ourselves outnumbered with the birth of a third child. 

Perhaps this is why we frequently find ourselves extolling the virtues of the single parent.  We have difficulty managing our children with 2 of us.  We can hardly imagine going it alone as do nearly half of all parents.

Hear me when I say this:  God esteems marriage.  He tells us in His word that He hates divorce.  (If you have ever been through one yourself, you have some idea why.)  But we live in a fallen world.  No one sets out with a broken marriage as their goal.  We are ALL sinners, saved by grace, in need of mercy.

Plain and simple, we are called to offer compassion and support to those who are flying solo through the challenge of parenting.


My own family's recent circumstances have given me a renewed awareness of the challenges my friends face raising their children as single parents.  This fall, my husband found himself between jobs.  Being the diligent, responsible man that he is, he took a job with odd hours that pays less-than-a-living-wage just to make ends meet while still hunting for a suitable position.  The children and I find ourselves without my husband most of the hours that other families are together. 

Because of this time apart, here are some of the glaring needs of single parents that have become most noticeable to me:
  1. It sure would be nice if people would offer to give your child a ride to extracurricular activities. -- There is nothing more maddening than being the only adult available in the household when several kids need to be delivered or picked up at different places on the same evening.  It is especially frustrating when others who live nearby have children also going to some of those same destinations.  Would it kill them to offer to pick up your child and drive them as well?  Think of that next time you are out running kids!
  2. Meal times are a big deal. -- Especially when the children are younger, trying to prepare dinner and get everyone to the table to eat together can be laborious.  If a parent is also trying to run kids to activities, medical appointments or therapies, it's downright exhausting.  Surprising a single parent with a gift card to a nutritious fast food venue or a grocery for convenience foods would really bless them.
  3. There is a HUGE need for back-up when there are medical emergencies or hospitalizations. -- Trying to transport siblings or manage personal affairs when we need to be with our child who has special needs is nearly impossible.  Not everyone has family in town to help them.  If the ex-spouse is not living nearby or involved in the child's life, there may be no help in situations like these.  Extend hospitality to the unaffected sibling, so the single parent can be where they need to be during such stressful times.
  4. Attending church is not easy. -- Plain and simple, being outnumbered by children, or even being the sole adult responsible for one child can be demanding.  Besides working a job outside the home, all of the requirements of single parenting can leave little "down time".  Judgment or exclusion by those who attend as intact families, and lack of special needs ministry at a church would leave a single parent wondering why a person should put forth the effort to drag everyone out to a Sunday service.  Church families could definitely exhibit the love of Jesus in very practical ways by reaching out to single parents to make Sundays easier.
  5. So much is STILL geared towards couples. -- I must confess, Snappin' Ministries does much towards helping preserve marriages.  But what if a parent is single?  In our case, we do still offer respite and other opportunities to those who are not married.  However, I think all of us could to more to include those who are on this journey without a partner.
Now, lest I presume to put words int he mouths of those who truly ARE on this journey as single parents, here is some of the feedback I have received from them:
  • It is easy to feel overwhelmed when you are the only caregiver in the home.  Unlike when there is a married couple in a home with a child who has special needs, a parent often can't just run out quickly to pick something up because their child cannot be left alone, most often not even into teen or young adult years. 
  • Recognition or understanding of what the single parent, special needs family is going through would truly serve to validate and strengthen these parents.
  • There are often many more issues with transportation because shared custody of children is common these days.  Running between households or extra distances due to hospitalization creates tenuous situations with automobiles.  If a car breaks down, there is not another car to use in the home.  Fuel costs tax an already strained budget.  The gift of gas cards could be an enormous blessing to single parent families.
  • Not having a sounding board to discuss medical options can leave a single parent feeling even more stressed.  Never underestimate the power of being able to look at all angles of treatment concerns (or school concerns, for that matter) with a like-minded individual who knows your family.  And oh, what a blessing it would be to have someone just listen to a single parent think it through out loud without offering unsolicited opinions! 
Raising a child with any sort of special need is an enormous challenge.  We could speak ad infinitum on the topic of being a sole caregiver, but at least this brief essay gets us all thinking on the issue and all the unique difficulties involved.  It also gives us a chance to say, "HATS OFF TO YOU, SINGLE MOM OR SINGLE DAD!"  We love you, and we are here to support you every step of the way!

PRAY:  LORD, your perfect plan for families is that both parents would remain in a committed marriage, but it doesn't always work out that way.  Thank You that You love us no matter our marital status.  Thank You that You have a tender heart for those who are struggling to raise a child with special needs on their own.  Unite us in perfect love and mutual support to edify and strengthen families on such a journey.

~ Barb Dittrich
*AN EXTRA NOTE OF THANKS AND LOVE TO THE SINGLE PARENTS WILLING TO SHARE THEIR THOUGHTS AND HEARTACHES FOR THIS POST.
Photo credit top picture 123rf.com
Photo credit picture in body of text 123rf.com

Wednesday, February 19, 2014

Did I Shave My Legs For THIS?!

  
Teach them to your children. 
Talk about them when you are at home and when you are away on a journey,
when you are lying down and when you are getting up again. 
~ Deuteronomy 11:19 NLT ~
Everyone warns you: Be careful what you say and do in front of your kids; they are like sponges!

The other morning I was getting ready for the day and let my three year old take a shower.  He likes to think he is a big boy and I guess showers do the trick so I don't argue.  As I went about my morning of face, teeth and hair, all of a sudden I realized it was eerily quiet.  I squinted into the mirror to see behind me into the shower and realized he was using his plastic toy razor to shave his legs.
In that moment, as I stifled many giggles, I felt my heart grow three sizes just like the Grinch.  My son is imitating me - doing what he thinks is right because it's what he has seen me do.  I don't know if I have ever felt more loved by a child than in that moment. 

I will never forget that moment.  Never has my son questioned why I shave my legs; he didn't even ask me if he should shave his.  He did it because he loves me and wants to be like me.  He "shaves" his face also, in the same way his Daddy does.  These are the kinds of things our kids learn simply by watching us go through the motions of life.

But what am I being intentional with them about?

In Deuteronomy 11:18+19, God calls us to boldly imitate Jesus in the way we raise our kids:
"So commit yourselves completely to these words of mine.  Tie them to your hands as a reminder, and wear them on your forehead.  Teach them to your children.  Talk about them when you are at home and when you are away on a journey, when you are lying down and when you are getting up again."  (NLT)
Am I tying the promises of God to my hands as I physically guide my 9 year old son's handwriting exercises?  Is his love apparent on my forehead as I talk with all of them about the consequences of their choices?  When we are at home, do I use scriptures for building up and sharpening, rather than condemning?  When we go away on a trip, do our prayer times stay at home or come along with us?  When I am putting them to bed for the umpteenth time, do I do it with truth AND mercy?  When they have already had 5 meltdowns before my coffee has kicked in, am I responding as if Jesus has got everything under control?

I want to do things, all things, in a way I would be proud to see my sons imitate, and the best way I can think to do that is by imitating my own Heavenly Father as much as possible. 

PRAY Dear Lord, you are my Father and I want to be like you.  Forgive me for all the time I spend asking "why?" instead of just trusting you and following your example.  Give me wisdom to know how to imitate you in every moment with my children so that they may also imitate you.  Amen.

Tuesday, February 18, 2014

Temptation by Elevation



Photo Courtesy of www.graphics20.com
After this I looked, and there before me was a door standing open in heaven.  And the voice I had first heard speaking to me like a trumpet said, “Come up here, and I will show you what must take place after this.”  Revelation 4:1

I have found an odd and contradictory conceitedness that comes with being the parent of a child with special needs.  People, in a manner of support, will say things like, “God meant for you to be Evie’s parents, because only you could do this…”, and “You’re amazing, I don’t know how you do what you do…”  
These types of comments really DO make me feel better, and I honestly appreciate them.  However the Devil uses such statements as a tool for his purpose; to turn me from God.

God challenges me to a higher place by continually stretching me in my abilities.  God says, “Come up here, Tammie…I’m taking you another level higher than you’ve ever been, because you’ve grown stronger through your challenges, and you’ve learned more about me.”    
God asks me, not to put one foot in front of the other in my walk of faith, but to place one foot above the other, as I climb the stairway to heaven.

The Devil, however, says, “Come up here, Tammie…Don’t you see how powerful you are?  Look at the things YOU have accomplished.  Not ‘just anyone’ can do that.  You are extraordinary.”  The Devil fills me up to the point that I don’t have room to allow God in.  He keeps my daily schedule filled with honorable projects that take my focus off of God and turn me toward my own strengths and talents. 
The Devil takes me to temptation through elevation.

There’s a fine line we walk as we make this journey through parenting our children with special needs.  We must stay humble, while also staying confident; we must challenge our children to help them grow, but also let them know that we still love them regardless of what they accomplish; and we must stay consciously aware of the fact that we are still human, and are susceptible to the Devil’s temptations so we need to stay buried in God’s word daily in order to recognize temptation when it comes knocking.

Have you ever called someone and automatically plunged into your dialogue with the person who answered the phone, only to find out a few confused sentences later that the person you are talking to is NOT the person you thought you were talking to?   

It’s even more embarrassing and painful when you dive into a decision or a plan, thinking it was God’s calling, but you come to find it was Satan’s temptation.  Knowing and recognizing God’s “voice” is critical to avoiding a trap that Satan has set.  And the only way to recognize someone’s voice is by talking to that person daily. 

Pray:  Dear Lord, thank you for encouraging me through others.  I ask you for discernment and wisdom from the Holy Spirit as I go through this day and every day.  Help me to know YOUR voice so that I don’t fall into temptation.