Friday, March 27, 2015

The Gift of Chronic Pain

"Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing" James 1:2-4

One day I prayed with my entire being that I only wanted Christ to shine through me. I was tired of my sinfulness and selfishness and only wanted Christ to shine through me. This prayer was sincere and was with what passion I had overflowing in my heart for Christ because of what He had done for me on the cross because of His love for me. I never experienced that kind of love before so I only wanted to give it back. Then life hits.

That prayer was sincere and I do pray it still and long for that day when I will be "mature and complete lacking nothing" but over the years my life became one plagued by chronic pain. I do not know if you have much experience with pain but it can make the sweetest person mean. Pain is hard to push through. Yet when it decides to sit with you and become a friend that doesn't leave you have to adjust your life to it.

God reminded me of that prayer I prayed. Looking back now 18 years from the time it started I can see the great gift it was and still is. Because of this constant companion I am forced to live swimming in His grace. As you deal with something like pain you have to humble yourself, you have to die to yourself because if you don't you will become bitter and hard and it is in this dying that we become more like Him.

There is a reason that the Bible says that it is harder for the rich to enter the kingdom of Heaven, it is because they have the greatest temptation to rely upon themselves instead of God or anyone else though God is the one who bestows any gift. It is easy to forget, but in suffering it is easier to cry out to God.

I am a stubborn and independent person by nature. I need to have the constant reminder of His grace in my time of need(which is continually). I need the reminder to keep my eyes focused on eternity and what is coming. This helps you remember to number your days and keep the perspective of what really matters. God's gift of chronic pain is what keeps me anchored to Him. It is the greatest gift. I wonder what He uses in your life? Maybe it is the constant struggle trying to understand your child's diagnosis or maybe those therapy appointments that take up your entire week? Maybe it is temptation to worry about finances or your child's future? What is that thing that will make you hard or force your focus on God?

Though pain is not fun to live with in general, I remember this life is short and each day is a gift. I get to share in Christ's sufferings and I know He is walking this with me. Living with pain helps you see others in pain. It gives you a greater heart of compassion for others thus helping you love others. Pain is a great training tool and so is whatever struggle you are plagued with in this life but take heart because eternity is soon coming and Jesus is coming back for those of us who are found in HIM! Hang on dear one! He gives more grace. Rest in Him for He is at work making all things new.

Father, help us to see even the hard things as grace gifts in our lives that help us to die more to ourselves and look a little more like you. Thank you for the gift of suffering. Help us to see it as a grace gift in making us more like you. Help us to trust you and wait for you, for you are coming soon. In Jesus Name. Amen.

~Angela Parsley

Thursday, March 26, 2015

Danger in the Periphery

Image "Suspension Bridge to Mangrove Tropical Forest" Courtesy of Keerati/
Peter, suddenly bold, said, “Master, if it’s really you, call me to come to you on the water.”
He said, “Come ahead.”
Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, “Master, save me!”
Jesus didn’t hesitate. He reached down and grabbed his hand. Then he said, “Faint-heart, what got into you?”  MSG Matthew 14:28-31

I have a faint heart as well.  There are many times that I have found myself saying, "Oh yeah, Jesus, I have a big faith, call me out there and I'll walk to you." 

But the minute I look down or to the side; or, God-forbid it, BEHIND ME...Look out, I will sink like a brick.

Have you ever played "Vanishing Point" on a long car ride?  My mom reminded me about vanishing points when we were driving through Nevada on our way to my new home.  We could see the long stretch of highway ahead of us.  It just laid out there, like a grey stretch of flattened hose on scorched desert land.  You could see the mountains up ahead but the road would just disappear into a point straight ahead of us.  

It was always right there in front of us.   

We could see the point where everything would vanish and it looked like the end.  But it never was.

"Will it turn left or right?"  we would ask, and then try to pick a point to determine if we had indeed turned right or left...but, unless we were watching a compass, we really never noticed turning left or right. We never knew if we went left or right to go around the mountain that had once been in front of us.  We never really knew when we reached that vanishing point, because there was just another vanishing point ahead of us.

From an "artistic" standpoint; in drafting or drawing, the vanishing point is "that spot on the horizon line to which the receding parallel lines diminish."  ( accessed online 3/23/15) 

As Christians, that is our goal; to reach the vanishing point.  If we look to the side too often, or if we are looking behind us, we can get off course; we can lose our way.  As we continue to stare down the road at our vanishing point; at Heaven and Eternal Life with Jesus, we can let all the little things along the side of the road; in the periphery, pass by without taking our attention off the one thing that matters. 

That's how you're supposed to cure motion-sickness too.  Did you know that?  

If you're in the back seat of a car, you feel the motion of the car, but you're staring at the motionless front seat headrest.  In order to alleviate the discomfort of being carsick, you should pick a point on the horizon and watch it as it comes toward you.  Then, when you've reached that point, you pick another point out on the horizon, and so on.  This balances the motion that the fluid in your ears feels with the motion that you are seeing.  (That's also why it doesn't work in planes!  No horizon, no balancing the feelings.  When you're seasick, it's better to be on deck so you can watch the horizon too!)

Runners will ALSO often use this technique to help them run faster and stronger races.  Pick a point out in the distance and stay focused on it until you reach that point, then pick another.  

What does this all mean?  Clearly, God means for us to stay focused on what lies on the horizon, and not become wrapped up in the periphery.  Yes, we have disappointments.  Yes, we have illnesses, surgeries, medical bills, IEPs, appeals, marital problems, family issues...all of that is to be part of our peripheral vision as we stare down the highway toward God, for He is our Vanishing Point.  

Peter looked down and he started to sink.
Jonah went the other direction and got swallowed by a big fish.
Sampson got sidetracked with a beautiful woman and lost his strength.
Adam and Eve had it all, but listened to the serpent.

There is clearly danger in the periphery.  

Pray:  Heavenly Father, I know I tend to get off track and I let myself worry about or become bogged down with the things in the periphery.  Help me, TODAY, to start looking for you on the horizon.  Help me to stop looking down, behind and to the side; I want to stay focused on you and the life eternal which you have promised.  Amen.

Wednesday, March 25, 2015

Bring Much-Needed Sunshine

Proverbs 25:11 HCSB

It has been an unusually cloudy and gray winter and early spring for us. I had not realized how much seeing sunshine several times a week lifts my mood and helps me feel more positive about life in general. I am feeling the lack deeply. On the days when we get a few glorious moments of sunshine, I have a hard time concentrating to do anything productive. All I want is to stand at the window and look outside---or actually get out there and soak up some of it and produce some vitamin D!

As the parent of a child with special needs, I go through seasons when my life feels much like the weather has been recently: gloomy. Whether it’s health issues, financial or job challenges, exhaustion, or relationship struggles, sometimes I have difficulty clinging to God’s promises and remaining hopeful. During those times, a phone call, card, or text from a friend, checking to see how I’m doing, means a lot. Truthfully, a smile or kind word from a stranger does a lot for me during those times!

Despite the fact that I’m struggling myself, I need to remember what a lifeline those precious words are to others who are going through difficult times too. I also need to think about how ministering to someone else lifts my spirits. And if most of the people we see in a day’s time are fighting their own battles, and a smile or kind word or action can lift their spirits and ours . . . . Then what am I waiting for? It seems like I should follow in John Wesley’s footsteps and aspire to:

Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.

Will you join me?

Pray: Father, thank you for giving me the occasional glimpses of sunshine in the middle of this gray season. Help me to remember how much that little bit of brightness means to me and how a kind word or deed can do the same for someone who is hurting. Help me see people the way you see them and to try to brighten their day in some small way. Amen.

~ Jennifer A. Janes

Tuesday, March 24, 2015

Interns and Residents and Fellows... Oh, My!

Photo image courtesy of artur84 via
Don't be conceited, sure of your own wisdom.  Instead, trust and reverence the Lord, and turn your back on evil; when you do that, then you will be given renewed health and vitality.
~ Proverbs 3:7-8, TLB ~ 

He who belittles and despises his neighbor lacks sense, but a man of understanding keeps silent.
~ Proverbs 11:12, AMP ~

Parenting a child with a chronic illness, disability, or special need is a dance -- One that often has us partnered with a person who has newer, more expensive, custom made, orthopedic dance shoes.

Medical professionals of all stripe become that permanent dance partner in our lives when our child receives a diagnosis.  This can often make a waltz look much more like a wrestling match.  As we get to know our children and how their diagnosis behaves with them specifically, we find ourselves becoming their triage nurse, diagnostician, and we also have definite opinions about what approaches we are willing to explore.  At times, this puts us at odds with some of the medical people we encounter.

For instance, I can remember a time when our son was just a toddler.  We were trained that if he hit his head on something, it usually was not critical if the object, such as a chair, moved.  However, if the item was stationary, there would be reason to do a head CT to assure that he wasn't experiencing a serious intracranial bleed.  One weekend, our son led with his tiny toddler head, giving himself yet another  nasty hematoma.  My husband thought he would offer me a break by running our son in to the ER for infusing with clotting factor, to manage the swelling and reverse the damage.  I was glad to relinquish some responsibility for a change.

Before he left, I warned my husband, "They are going to want to do a CT of his head, but he doesn't need one.  Stand your ground and don't let them do one."

I continued at home and let my husband enjoy the fun of a 3 hour visit to the ER for an infusion that typically only took 5 minutes to administer.  Sure enough, the resident on duty was insisting that our son needed a head CT.  To my husband's credit, he stood his ground and said he didn't want our son to have one.

"I know your hematologist, and I KNOW she would want your son to have a head CT in this situation," the resident arrogantly insisted.

"Fine," my husband calmly stated.  "Then call her."

"I WILL!" argued the resident.

You can imagine the smirk on my husband's face when an ER nurse returned to the exam room to tell my husband, "The resident decided your son doesn't need a head CT."

The dance...

Three years ago, our son was admitted after school through the Emergency Department for a life-threatening bleed in his hip area.  We were finally ushered to his room on the floor late at night.  After dealing with a physician's assistant, a child life specialist, the radiologist who did the ultrasound imaging on his hip, the attending physician in the ER, and the nurses, I could not sanely finish letting the resident on the floor take an entire family health history at 10:30 PM.  The mere crisis of the situation had exhausted me.  I respectfully asked him if we could just skip this or do it another time.  I understood that he needed to learn, but I also knew that this wasn't the moment in time where I could manage a teachable moment for the benefit of another person outside my family.

During yet another hospitalization, I found myself clarifying for a hematology fellow doing grand rounds, some nuance of internal bleeding in my son.  She may have been the wunderkind regarding the subject of hematology, but I was the expert on how that bleeding disorder behaves in my child.  It was my job to advocate for him and make sure she understood this detail so that he received the proper treatment.

I share each of these anecdotes with you because they aptly illustrate the discerning expertise we parents need to develop in dealing with these professionals.  It's not easy.  Many of them can be demeaning or dismissive.  Still, God calls us to approach them with His grace to the best of our ability.  While medical professionals should not treat us with arrogance, neither should WE treat them that way.

Humor has been my coping mechanism through many a trial.  When I find myself feeling belittled by a medical student, I often think, "Honey, I have underwear older than you."  This helps the tension of their need to feel right and competent -- which can at times be incredibly offensive -- slide right off of me.  I would NEVER say this to their face, but it helps me to add a humorous spin in my mind, gaining perspective rather than suddenly questioning my own competence as a parent.

Better yet are Laurie Wallin's recommendations about approaching professionals in her recent release, Get Your Joy Back:  Banishing Resentment and Reclaiming Confidence in Your Special Needs Family.  Her recommendations challenge readers to examine their own expectations and offer forgiveness that leaves room for God to intervene.  She also recommends that parents reconnect with their instincts, approach professionals with prepared documentation on issues, recall past successes in helping their children, try to see from the pressured perspective of the doctors, reframe criticism in order to learn from it, and thank God for the doctors who don't treat you like a chart.  Taking these intentional steps helps us to soften as warrior parents, approaching the full range of medical staff with the love of Christ when we would rather blow our stack. 

There's no doubt, this parent/medical professional dance requires a whole new language.  Keep in mind that it also requires a whole new dimension to our Christian walk, stretching us as believers.  How we interact with these people in the medical system makes the difference between reflecting God's glory in the most unlikely of places and looking just like the rest of a sin sick world.

PRAY:  Holy Spirit, live in me and work through me.  When I am stressed and sleep deprived it is so much easier to blow my stack than to extend Your grace.  Grant me Your discernment as I engage in this lifetime dance with people whom You love just as much as You love me.

~ Barb Dittrich

Monday, March 23, 2015

Dear Parent, Don't Go It Alone

Two are better than one, because they have a good [more satisfying] reward for their labor;
For if they fall, the one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!
Again, if two lie down together, then they have warmth; but how can one be warm alone?
And though a man might prevail against him who is alone, two will withstand him. A threefold cord is not quickly broken.
~ Ecclesiastes 4:9-12, AMP ~

Solomon asked God for the gift of wisdom when he was given the option to ask anything of the Lord.  It was granted him in full measure to the point where people from around the world sought out that wisdom.

So why do we silly humans think we are smarter than the very words He poured through one of the wisest humans that ever lived?

Dear Parent, don't go it alone!

I know some of you feel like you have worn out your welcome with relatives and friends who seem to glaze over when you are trying to share yet another difficulty you are enduring with your child.  They have minimized your struggles.  They have left you without help when all you need is a simple word of encouragement, a prayer, or a tiny gesture of kindness to keep you going.  They don't know how difficult your life is every single day.

But God never meant for you to do this on your own.

I know some of you feel so utterly betrayed.  Those you thought you could depend on have demeaned you.  They gossip behind your back, passing judgment on your parenting skills because of your child's autistic behaviors or OCD compulsions.  They don't know the hours and hours you have spent in therapy and follow-through at home.  They have no clue how exhausting your life is having to focus so much attention on this child.  Their stinging words are so unfair.

But God formed you for fellowship, not isolation.

I know so many of you are tired of always having to be the one to reach out, to try again, to find solutions.  Life has you weary.  You have been burned before.  You are afraid to trust again.

But God has an entire army of parents just like you out there, willing to put their arms around you and say, "I know just what you mean."  They've walked this grueling path too.  They need you as much as you need them.  And using Solomon, God calls them better, good, and more satisfying. He feels sad for you when you don't take the help available to you.

In Proverbs 3:27 God tells us, "Do not withhold what is good from those who deserve it; if it is within your power to give it, do it." (VOICE)  That includes YOURSELF, my friend!

Don't bring more suffering upon yourself by further withdrawing, wounded one.  There are so many of us out here hurting too.  We're just waiting to put our arms around you in friendship and say, "What!  You too?"

PRAY:  Magnificent Maker, thank You for giving us the shelter of one another, especially when we are feeling battered by this world.

*For information on plugging in to Snappin's Side-By-Side Small Group mentoring, e-mail

Saturday, March 21, 2015

"Are You Serious?" Awards - Volume XLV: IT'S A TIE THIS WEEK!

I want to start out telling you NOT to get discouraged after reading about this week's award winners.  They are BAD!  But YOU are stronger than the nastiness these "winners" are wielding.  Let these situations empower and activate you.  Simply by virtue of the fact that you are reading this blog tells me that YOU were uniquely made for such a time as this, to be a voice for those drowned out by the rest of the world.


So, imagine giving birth to a beautiful baby boy.  Joy abounds as he is added to your family.  Grandma and Grandpa are euphorically called with the news right after he enters the world.  Big sister comes to meet him.  This is a pinnacle experience!

The day after  his birth, you find your family taking a precipitous plunge from that height as the doctor enters your hospital room with heartbreaking news, "Well, there's no easy way to say it.  He has hemophilia."

Over the next 15 years in his battle with this chronic bleeding disorder, he will have over 2,000 IV needles inserted, administering the life-saving clotting factor that his body will not produce.  The cost of his treatment runs in the neighborhood of $200,000 per year if all is going well.  If it is a bad year, it will cost more because there will be hospitalizations, procedures, extra infusions, and maybe even a wheelchair thrown in for a time.

Then, in one short Sunday episode of a TV series, "Secrets and Lies," there is this...

Listen to the video excerpt for yourself here:

Words failed me at a time like this.  The child you were imagining is MY child.  And the insult leveled with such abhorrent misinformation for the sake of a TV plot line not only demeans this magnificent young man I am raising, but also many, many other awesome men, boys, babies and their fabulous families around the country.

Thankfully, national organizations advocating for our families wasted no time in condemning ABC and the show's writers for spreading such harmful, insulting ignorance during - of all things - Hemophilia Awareness Month.  Both the National Hemophilia Foundation and  the Hemophilia Federation of America issued scathing press releases, asking for a public apology.  Bleed Free, Inc, a patient-driven advocacy group established a petition for people to sign, requesting that ABC make a public apology to both the hemophilia community and the viewers of "Secrets and Lies."

Patients engaged, one putting together a list of all of the show's sponsors for complaints to be lodged.

Patient assembled list of sponsors
Mother and hemophilia community advocate, Brendan Hayes, wrote an encouraging, empowering post applauding the activation of patients around this issue.

And despite all this, the community still awaits a response.  Perhaps you would be willing to join us in contacting ABC/Disney's president, Ben Sherwood about this insulting ignorance.

Meanwhile, Ben Sherwood and Barbie Kligman, the show's executive producer (@Barbielk on Twitter) really ought to spend some time educating  themselves on the basic facts of hemophilia.  It's too bad they never cared enough to do that before they inflicted so much harm on people with this disorder and their families, to the point that there are now kids afraid to go to school because of their LIES.

Since it IS still Hemophilia Awareness Month, YOU should also learn the facts!  Hemophilia Federation of America has a great page consolidating facts and images.  CLICK HERE to learn more! 


Not to be outdone by Hollywood's rude ignorance, a cruel, rude neighbor more overtly insulted a young lady in Miamisburg, OH.  After losing her leg in an accident, Ashley Brady fought to get a handicapped parking space in front of her apartment.  Unfortunately, once she was finally granted the spot, someone without a hang tag or disabled plates repeatedly parked in the space.  Given the fact that she had fallen in the past, Brady left an assertive note asking the person taking the space to please stop parking there.

Photo image courtesy of trendobjects via
 What she got in response was this STUNNING trash left on her windshield:
"Hey handicap! First, never place your hands on my car again! Second, honey you ain't the only one with 'struggles.' You want pity go to a one leg support group! You messed with the wrong one! I don't care what your note said shove it, but you touch my car again I will file a report, I am not playing! I let the office know the cry baby one leg touches my property I will cause trouble so go cry your struggles to someone who cares cause I'm walking away with both mine! -[expletive]."*
 Are You SERIOUS?!

Seeing this sort of depravity documented in writing is upsetting.  We don't want to believe that people can be this mean and ruthless over a parking spot.  Yet, when you couple stories like this with more stories like the one about a woman with a suspended license and a stolen, expired placard being charged with aggravated battery in Greenfield, WI for knocking an elderly woman to the ground over a parking space, you see that the nastiness is more pervasive.

Thankfully, in the Brady story, complaints were filed with both the police department and her apartment manager.  Perhaps this will keep this brave young woman safe as well as give this adult bully a second thought about how she treats others.