Monday, February 29, 2016

7 Reasons YOU Should Care About Rare Disease Day

Share each other’s burdens, and in this way obey the law of Christ. If you think you are too important to help someone, you are only fooling yourself. You are not that important.
~ Galatians 6:2-3, NLT ~

There are people around you crying out for you to care about them today.  Battling nearly 7,000 varieties of anguish, they are uniting their voices hoping that you will hear them. While you're complaining about being stuck in traffic, they are just hoping to keep their child alive and well today.

These are the caregivers of Rare Disease Day, the annual observance intended to raise awareness of the nearly 1 in 10 Americans with a diagnosis affecting less than 200,000 individuals.  I am one of these caregivers, battling 2 different diagnoses in 2 of my 3 children.  Given that I have lived through nearly 16 years of parenting a son with Hemophilia A - Severe and 13 years of care for a daughter with erythema multiforme, I think I have gained insights enough to share with you what makes caring for someone with a rare diagnosis so unique:
1. It is frightening. -- As with any typical child, every day could be your child's last.   However, this is far more of a likely reality for caregivers like us. This threat-of-life reality hit our family hard a few days ago.  Hemophilia researcher and patient, Dr. Holbrook Kohrt, passed away this week at the tender age of 38, despite major advances in treatment.  This is a sobering reality for those of us raising a child with such a diagnosis.
Seizure disorders are another example of rare diagnoses that worry caregivers to the core. While the typical world seems to take for granted that everything goes back to normal after a seizure, parents can tell you of the loss of language, function, and threat of life.  Just like a computer crashing, each time a child goes into status could be their last.
Premature death is frightening.  None of us wants to face the prospect of outliving our children.  Yet, it's a demon that haunts us daily.

2. We live in a state of constant heightened alert and stress. -- With the frightening realities we face, is it any wonder so many of us live with post-traumatic stress?  Without notice a malfunctioning shunt can create debilitating pain for the child with hydrocephalus.  Every day childhood illness can render the child with sickle cell disease hospitalized in perilous condition. Cancer can darkly reappear threatening the child with WAGR Syndrome.  And on it goes.
We must be ready to turn off our emotions and make critical decisions for our child at a moment's notice.  The phone calls from the school make our heart skip a beat.  We release our kids to do things that "normal" kids do, like field trips, but hold our breath, trying not to be tense imagining the worst possible outcome.

3. We are vulnerable. -- With that heavy weight of responsibility on our shoulders, we must stay on top of the latest information regarding treatments, surgeries, therapies, and medications.  If we are fortunate enough to have a treatment for our child's diagnosis (because many, many rare diagnoses do not), we long for improvements and cures.  Yet, as I wrote a few weeks ago, some treatments can be formulated at a hefty moral and ethical price.
This leaves us terribly vulnerable.  In our desperation, we might be too quick to try a new treatment, not waiting until all of the kinks have been worked out.  We are more subject to the demeaning pushiness of medical professionals who are convinced that they are the preeminent authority on something unusual.  We are more likely to be taken advantage of by schools, who often have difficulty in understanding the nuances and adaptations involved in rare disease.  We are more likely to be taken advantage of financially in our desperation for help in caring for our high needs child as well.
4. We are more financially stretched. -- Because of the nature of our child's diagnosis, the mountain of bills never seems to subside. Yes, insurance and supplemental Medicaid can pay for a large portion of the expense, but there is still a disproportionate amount left.   Between specialty pharmaceuticals, adaptive equipment, surgeries, running to a cadre of specialists and therapists, and merely putting gas in your car for the seemingly endless appointments, caregivers struggle to provide a "comfortable" life for themselves and their families.  Now add to those things specialized clothing, lost pay from mom or dad missing so much work to be with their child, and a thousand other incidentals that only come with a rare diagnosis, and this is an above-average financial strain.
5. We are grateful for the little things. -- It's not all bad! Rare diseases and disorders can make everything seem like an uphill battle. This make caregivers like us appreciate the little things -- which incidentally, end up being not-so-little.  A full night's sleep for everyone at home in their own bed is a BIG deal.  A warm meal enjoyed together as a family is a BIG deal.   Kindness or concern from another human being is a BIG deal. Accessibility into public places still remains a BIG deal. While everyone takes some things for granted on occasion, for the most part, parents like us have the advantage of finding God's grace in the small stuff.
6.   EVERYBODY knows SOMEBODY affected by rare disease. - Each person with a rare diagnosis is a part of a wider circle.  Rare disease affects more than just the person with that diagnosis. Besides parents and caregivers, family, extended family, medical professionals, education professionals, neighbors, friends, and fellow church-goers are ALL touched by rare disease.  It is estimated that 30 million Americans are affected by some sort of rare disorder.  This leads me to my last reason you should care...

7. God mandates in His word that you should care about this. -- Galatians 6:2-3 sums it up pretty well. We are called to bear one another's burdens.  We are called to love as Jesus did.  This means that we all need to take notice of the concerns of people living with a rare diagnosis. Whether it be Addison's Disease, Chiari Malformation, or Rett's Syndrome, these families deserve your undying support an concern, not just for one stretch of difficulty, but for the long haul.


So how do you show that you care and live out your concern for the families of Rare Disease Day?
  1. Pray without ceasing. -- This is a God-sized challenge!  Only by His continuous guidance and help can families like ours get through.  Pray for the researchers, that they would remain ethical and respectful of all life.  Pray for the doctors and medical staff, that they would really listen to their patients.  Pray for educators, that they would put the extra effort into accommodating and including these children with respect.
  2. Offer financial support of any size. -- If we all gave just a little, imagine how much we could raise in total!  Please support us in our support of rare caregivers by purchasing our limited edition t-shirt TODAY at https://www.booster.com/rare-disease-day-2016 OR by donating on our website at http://www.snappin.org/#!give/c1jxp.  Your funds go towards purchasing books for parent mentor small groups, sending gift cards and baskets during crisis or hospitalization, and offering events that give special caregivers a chance to breathe and smile.
  3. If you are a rare caregiver, join our Facebook Parent Mentor Small Group! -- We have designed a NEW parent mentor small group specifically focused on the extra challenges of raising a child with a rare disorder.  Learn more about it by contacting us via our Facebook Page at https://www.facebook.com/snappinministries/
  4. Follow the news on Rare Disease Day. -- Stay up-to-speed with the national movement to bring awareness on Rare Disease Day both in the United States at http://rarediseaseday.us/ and worldwide at http://www.rarediseaseday.org/.  You will be surprised what you learn!
  5. Help spread the news. -- A couple of years ago our ministry put together this fast facts card for others to share when they committed a "rare act of kindness."  Feel free to copy and print this card, leaving it behind when you fill somebody's parking meter, pay for their coffee, or let them get ahead of you in line.  The world could sure use more kindness these days, and the world needs to hear about rare disease as well!



PRAY:  Lord, help us to be Your ambassadors of hope to those living with a rare disorder.  May we focus less on ourselves and more on caring about one another.

~ Barb Dittrich

Friday, February 26, 2016

Love - The Jesus Way

Photo credit: pixabay.com

For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in, I needed clothes and you did not clothe me, I was sick and in prison and you did not look after me.’ “They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’ “He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’
Matthew 25: 42-45 (NIV)

I can’t help it. I keep coming back to this verse.  “Blessed be the God and Father of our Lord Jesus Christ, … the God of all comfort, who comforts us in all our troubles so that we can comfort others with the comfort we have received.”  (2 Cor. 1:3-4) They say that when you have a hammer, everything is a nail.  Perhaps this verse is my hammer.

I sat watching the Dreamworks version of the Joseph story recently, and was struck with how angry Joseph must have been when he saw his brothers, and realized his dreams were true.  I wondered how he worked through the chaos of that moment.  How does he move past it?

The kids and I are also reading about Mother Teresa.  She developed a teaching mantra: The poor people are Jesus. When we care for the destitute and dying, we care for Jesus.  When young nuns had difficulty in their early days cleaning sores with live maggots and gangrene, they anchored themselves with the belief that they were touching and caring for Jesus in that very moment.

Maybe Teresa saw what Joseph saw: the new paradigm - serve Jesus. Jesus is the homeless man and the dying woman and the confused kid with OCD and anxiety.  Jesus is my son with his inconvenient interruptions, my husband who did that same thing for the umpteenth time, my mom requesting help to navigate the modern world of technology. Jesus is the significant other in all my relationships. My response to Jesus reflected in these people is my single most important act of worship.  And what can I offer?  The comfort that I have been given.  I can care because I’m cared for. I can love because I’m loved. I give what I have been given.  From Jesus, to Jesus.  God takes care of both ends.

Lord, help me to bypass the rationalizations that keep me away from the mess in my relationships and to embrace the new paradigm, the Jesus way.  Bring the Jesus way into my family and my relationships in a new way today. Transform contractual, 'eye for an eye 'relationships into love covenants with you at the center.  Pour yourself into my husband and my children and everyone I connect with, as I lovingly serve Jesus in them.
Amen.

Thursday, February 25, 2016

I Didn't Find What I was Looking For...



“The Spirit of the Lord is on me, because he has anointed me to proclaim good news to the poor.  He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free, to proclaim the year of the Lord’s favor.”  Luke 4:18-19 NIV

A couple of weeks ago this passage in Luke piqued my interest in a sermon at church.  It really struck me because, well, my daughter is blind. 
Now, I’ve read plenty of the stories about the blind being healed in scripture, and that has never bothered me.  I’ve never thought, “Why would God heal one blind person here and another here, but not my daughter?”  I already knew that the answer would be, “He has a different purpose for her, and that does not include being healed at this time.”  
But, this particular verse stood out to me as peculiar because it seemed like a type of mission statement for Jesus, yet it seemed quite limited to me in the use of the word BLIND.
Why not say he would heal lepers, raise the dead, and cast out demons?
I decided this required a “word study.”  I LOVE my Blue Letter Bible app on my iPhone for this particular reason; I can do a word study right there on my phone with any part of scripture.  

So, I looked up this verse on my app and found some of the Greek words from the original text.  
Freedom:  Greek word aphesis :  release from imprisonment, forgiveness or pardon of sins, remission of the penalty (letting them go as if they, the sins or crimes, had never been committed).
Reading through that definition certainly gave me a more detailed understanding of the portion of this scripture which says, “proclaim freedom to the prisoners.”  

This did not mean freedom for people in prison!!!  This meant US; all of us!   This meant freedom for SINNERS…we would be set free; pardoned completely as though we had never sinned-and JESUS would be the way for this to happen.
Blind: Greek word typhlos :  can mean physically or mentally blind; obscure (smokey)
There are a plethora of times in JUST the book of Matthe where typhlos is used to mean physically blind.  
Matt 9:27, Matt 11:5, Matt 12:22, Matt 15:31, and so on.  
However, there are also times when typhlos is used to mean “mentally blind” as though the person couldn’t quite see the truth.  For example:  
Matthew 15:14 Leave them; they are blind guides.  If the blind lead the blind, both will fall into a pit.
or 
Matthew 23…He rebukes people several times using the term blind, but clearly not in speaking to those who are physically blind, rather those who he has found to be mentally blind…unable to SEE the truth in front of them.  Matt 23:17, “Woe to you, blind guides”; Matt 23:17, “You blind fools”; Matt 23:19, “You blind men”; Matt 23:26, “Blind Pharisee!” And the list continues…
Again, the original Greek for this word: blind, clearly gives us a more in depth understanding of WHAT Jesus came to do.  Sure, he was going to perform some physical healings of people who were blind, BUT, more importantly, he was going to be the CLARITY of God in the flesh…
Jesus wasn’t just here so the BLIND could SEE…
Jesus came so we ALL could see…so our EYES would be opened to the glory of God our Father who came and dwelt among us.
Even then, even when Jesus was RIGHT IN FRONT OF THEM, many chose NOT to see him for who he truly was.  They were still looking through their obscure and smoky minds.  
And so are many of us today…
Let’s look at that last phrase in Luke 4:18… to set the oppressed free…
Oppressed:  Greek word thrauĊ :  to break into pieces, shatter, smite through 
Whoa…I was kind of reading that as “people who are struggling…”.  

Right?  Isn’t that oppressed?  

Shattered?  Broken into pieces?  
That really does describe our world doesn’t it?  
That describes us when we find out our children are “broken” by the world’s definition.  
That describes the feeling when our child is turned down for life insurance.  
That describes the feeling when we receive one more diagnosis which will alter the trajectory of our lives here on earth. 

So, Jesus came to give us a COMPLETE PARDON from our sins, to clear our obscure minds so we could SEE God, and to put our SHATTERED souls back together again after being beaten down time after time in this world.  
I set out writing this because I wanted know why part of Jesus’s “mission” was recovery of sight for the blind
What I found was so much more…

Pray:  What more needs to be said after reading this powerful piece of scripture?  Praise the Lord.   God, you are so good.  All glory, honor and praise to you.  Your love is beyond anything we can comprehend.  Amen.



Wednesday, February 24, 2016

Better Than a Fairy Tale



Then I saw heaven opened, and behold, a white horse! 
The one sitting on it is called Faithful and True . . . . 
Revelation 19:11 ESV

I'm reading Melanie Dickerson's Fairy Tale Romance Collection with my older daughter. She has reached the age where a sweet romance with some suspense and adventure mixed in melts her heart and keeps her reading for hours without stopping.

I thought romantic notions left me long ago, but as I read these stories along with her, I have realized that my heart still holds a young girl looking for a hero to rescue, provide, and protect. I need a hero who anticipates my needs and loves me unconditionally, someone who would sacrifice his life to save mine.

As I pondered how a grown woman could still be longing for this fairy tale nonsense, I realized that God put those desires there because He is the one who fulfills them.

God is my rescuer, protector, and provider. He knows all my needs before I do and is faithful to meet them. His unconditional and sacrificial love can't be disputed. After all, He sent His only Son to die for me - to die in my place - and to rise again so that I can be with Him always.

The fairy tale ending is what He wants us all to have, and He gives it to us through Jesus Christ.

As I finished reading the fourth book in the series, I smiled to myself and thanked God for using fairy tales to point me to Him and to remind me that my longings are valid and can all be fulfilled in Him.

If I needed more proof of that, in the last pages of my Bible, I read that He is sending a Prince on a white horse. 

Seems to me like the writers of fairy tales got a lot of their ideas from the Writer of the greatest story of all.

Pray: Father, thank you for meeting every need I have, for being everything I need, and for loving me far more than I deserve. Help me to boldly share your love story with others, and let my life be a shining example of the truth that comes only from you. Amen.

Tuesday, February 23, 2016

Your Spouse Is Not Your Enemy

Two are better than one because they have a more satisfying return for their labor; for if either of them falls, the one will lift up his companion. But woe to him who is alone when he falls and does not have another to lift him up. Again, if two lie down together, then they keep warm; but how can one be warm alone? And though one can overpower him who is alone, two can resist him. A cord of three strands is not quickly broken."
Ecclesiastes 4:9-12 (Amplified Bible)

I was recently listening to a podcast by James McDonald with Walk in the Word ministries. He made a comment that resonated between my eardrums like a loud cymbal in a small room. He made a statement that went, "Often we don't need a NEW word from God, what we need is a GOOD word from God".  He was making the point that we should not be fixated on the 'latest' and 'greatest' thing that someone discovered from the Bible. In fact, Romans 15:4 tell us that the Bible was written long ago to instruct us in our situation today.  


All that to introduce a thought that I pray will greatly impact your marriage today. 


Here it is..."You and your spouse are not enemies." 

I know, I may sound like Captain Obvious, but it is a true statement and worthy of reminding ourselves. 

So often we get caught in the trenches of cleaning dinner spills and poo spills or even trying to squeeze a feeding in while the other siblings have finished and are running up the walls. 
As parents, we are not strangers to losing our cool and making mistakes...even towards each other. 

Then, after the homework is finally (hopefully) completed, teeth are brushed, fresh pull-ups on and lights out ... you finally get to crash on your own bed and, if we are not careful, we can keep the same frustrated momentum towards our spouse. 

These constant pressures, which are exponentially multiplied by a child with a disability can, and often do, cause us to question our spouse's dedication.

What I would like to suggest is that the Bible encourages us that we CAN be on the SAME TEAM and when we choose to be on the same team there is greater success. 

What I am NOT suggesting is that the pressure will decrease, but that your emotional and spiritual health will increase when you and your spouse tackle each day with the perspective that you have the other person's back. 

This isn't a complicated thought, but yet in order for your marriage to ACT like a team, you have to DECIDE to act like a team.  This requires a gracious conversation to convey to your spouse that you have their back. Notice that I did not say for you to tell your spouse to 'get in the game'.  Sometimes in a relationship, there is one person who wants this more than the other. As Emmerson Eggerich says in his book, Love and Respect, "Whoever considers themselves to be the most mature is the one to make the first move."  This is not a time to place more pressure or guilt-motivation on a spouse who is already overwhelmed.  But rather to practically show love and commitment simply by leading with action.

This principle is not new, it was penned over 2,000 years ago by King Solomon. The reality is that two are better than one. 

If you have any practical ways that you and your spouse support each other, please encourage other readers by commenting below.

Dear God, help this thought to settle in our heart and mind.  Help me to make sure that my attitude towards my spouse is loving and help me to support them. God, you designed our marriage to super close...please put us on the path of right thoughts and actions to make it a close relationship. Amen.

Be Encouraged, 

Bobby Lanyon (AKA Jack's Dad).  

Monday, February 22, 2016

I Don't Always Know What To Do

"We do not know what to do, but our eyes are on You." 
2 Chronicles 20:12c NIV
 A while back I wrote something about parenting where I said, "yet you know you have to push them through a little bit more."

Even on the calmest of seas, parenting can toss you around the boat.

Sometimes doing the right thing for our children and pushing them a little, or a lot, is needed. As parents of children with unique needs and challenges we are not strangers to hard work and adversity, to pushing through...neither are our children.

But sometimes there is a great need to be still.

Sometimes we rest in the knowledge and assurance that God is in control. This is an indisputable undeniable truth that is an anchoring concept for us as parents and human beings. A concept our children need to learn and learn by seeing us live it.

We must be actively still.

Because sometimes the steps are heavy taking great effort and every ounce of strength that we have, leaving no other explanation for our ability to move forward but God.

Our children look to us for guidance, direction and assurance.  We are most often, their anchor.

That is our position from the beginning. 

We are tasked with the incredible job of simultaneously coaxing, nudging, pushing them carefully through life and anchoring them to a firm foundation.

Slowly over time, as they grow, we teach them and they learn to shift that anchoring focus from us to God.

It is the way it should be.

We don't walk this parenting journey alone, God is right there for every step.

He is where WE look, where our eyes are focused.

He is where our help comes from.

He is our anchor.

I am growing to realize that being a parent never ends and it never "gets easy".

There are seasons and tides; and mountains to climb. There are heartaches and breaks.

You see unconditional love that never ends resides right next to the fiery discontent of the teenage soul.

It's the best roller coaster ride and scenic road trip; where you get stuck upside down and hit every pot hole.

There are easy times where you know exactly what to do, and then there are times when you are lost, and you have not a clue what your next step should be.

We only know...

"When we don't know what to do, our eyes are fixed on You."

I have to work to keep that focus. I have to let my children see me do that and see me direct their focus from me to Him...because I don't always know all the answers or what to do. 

It doesn't mean they will never look to me for guidance or advice, it just means that their eyes are ultimately fixed on Him, that they have learned to look to Him first.

Dear Heavenly Father, what better prayer can we pray than, "When we don't know what to do, our eyes are fixed on You." May our eyes look to you always, for direction, comfort, strength and help us to direct the gaze of our children to You. Amen.

~Beth 

Friday, February 19, 2016

Feasting on the Bread of Life

“Jesus said to them, ‘I am the bread of life; whoever comes to me shall not hunger, and whoever believes in me shall never thirst.’” 
John 6:35

I don’t come from a liturgical background, but in recent years, I’ve become more interested in celebrating the seasons of the church year. Our Baptist congregation shares space with a Lutheran church, and I anticipate with curiosity and delight the changing of their liturgical paraments. They have turned to purple now for Lent. On one banner is an image of the Lamb of God, on another a chalice and broken bread.  Whether we celebrate Lent officially or not, these weeks leading up to Easter can become a time of preparation and reorientation of our hearts and affections.

Most Sundays at the conclusion of our worship service, as we file out of our pews to collect the communion elements, our congregation sings Zac Hicks’ contemporary rendering of the hymn, Bread of the World, In Mercy Broken. The original, penned in the early 1800s by Anglican clergyman, Reginald Heber, was inspired by Jesus’ words in John.

Bread of the world in mercy broken,
Wine of the soul in mercy shed,
by whom the words of life were spoken,
and in whose death our sins are dead:
look on the heart by sorrow broken;
look on the tears by sinners shed;
so may your feast become the token
that by your grace our souls are fed.

It’s first a song of remembrance. It’s a weekly celebration of the Easter story—Christ’s death and resurrection for our redemption. Through communion and as we sing, we preach the gospel to each other and to our own hearts. It’s a prayer as well—a cry of believers’ hearts at the communion table for Jesus, the Bread of Life, to extend grace to his people as they come with examined hearts broken by sin, and with the weight of life, offering them to the one who bears our burdens, and calls us to eat and be filled with him.

In the sixth chapter of John, Jesus first revealed himself as this life-giving, soul-satisfying Bread, and invited the crowd following him to feast on him and receive eternal life. But the miracle he performed the previous day--of multiplying loaves and fishes to satisfy their physical hunger--had them clamoring for more. It was an offering of genuine compassion and concern, Jesus’ typical response to suffering and need, yet the event also served to provoke a response from the people that revealed their hearts. They wanted a manna-making prophet—bread from heaven—yet they failed to recognize the Bread of Life come down from heaven standing before them. The crowd turned away, rejecting the true bread and the answer to their true hunger. They couldn’t see him, and repulsed by the suggestion that they eat his flesh and drink his blood, they failed to understand that true life comes through believing on him. But the disciples heard him that day: “Lord … you have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God.” 

As believers, this is our confession as well. We know Christ as savior, and understand him to be the one who heals the brokenness of our souls and brings us into relationship with the Father. Yet we, too, struggle to see these truths—to see him—under the press of the urgency of our felt needs. Particularly as special needs parents and caregivers, the demands of disability caregiving can become so overwhelming as to even dictate the ways we relate to God and communicate with him. Petitions for developmental gains, healing, provision, physical help, and protection, consume our prayers. There’s nothing like crisis to keep us seeking him, and for some of us, raising a child with a disability provides a constant supply. He is our provider, and he asks us to come and to seek, but disability can also easily keep us earthbound in our longings, and can skew our understanding of our greatest need. He is still our greatest need and in him is our greatest rest.

“Whoever feeds on my flesh and drinks my blood abides in me, and I in him.” John 6:56

How does one feed/feast on Jesus daily in the context of very challenging demands? First, he gives the grace to feast. Feasting consists of coming and believing. There is no coming to him, and there is no believing without grace. Similarly, there is no abiding without his grace. So ask for it—ask for the very desire to know him more intimately. Additionally, we intentionally practice returning our thoughts to what we know to be true of him. We abide in him when we meditate on the word and the truth we know. And we ask again for the grace to remember, especially when our hearts despair. JI Packer says in his book, Knowing God:
Meditation is the activity of calling to mind, and thinking over, and dwelling on, and applying to oneself, the various things that one knows about the works and ways and purposes and promises of God. It is an activity of holy thought, consciously performed in the presence of God, under the eye of God, by the help of God, as a means of communion with God. (p. 23) 
May we in these weeks leading up to Easter, reorient our hearts and affections to reencounter the all-satisfying Bread of Life. He calls us to feast on his word, feast by his grace, and so feast on his goodness and on the hope only he supplies.

“We taste Thee, O Thou Living Bread,
And long to feast upon Thee still:
We drink of Thee, the Fountainhead
And thirst our souls from Thee to fill.”
Bernard of Clairvaux

(Packer, J. I. Knowing God. Downers Grove, IL: InterVarsity, 1973.)