Saturday, February 28, 2015

REAL and RAW for Rare Disease

Gold and rubies abound,
    but lips that utter knowledge are a rare jewel.
~ Proverbs 20:15, VOICE ~ 


TODAY IS WORLD RARE DISEASE DAY!

As I prepared to write my post today I thought, What can I say about this critical topic to make people care that I haven't already said before?  They already know that the biggest population this ministry serves next to families living with autism is families living with rare disease.

It seems that the most popular posts we share on this blog are the ones that keep it REAL and RAW, so here goes.

Because we parents raising kids with rare chronic illnesses, disabilities or diseases try to create a new "normal" in our households, we often make life look easy to the rest of the world.  We also have to block out some of the incredibly shocking parts of raising a child with rare disease or we would go CRAZY.  For instance, when I think about my son's Hemophilia A - Severe, one of the most shocking parts is that the cost of  his medication each year runs close to $300,000 just for the medication alone.  That doesn't include hospitalizations, special dental care, or other assorted specialized treatment.

Think about that for a moment with me...
THAT'S THE COST OF A REALLY NICE HOUSE EACH YEAR JUST TO SURVIVE!

There is an unusual "normal" we and many other families like us have created in our homes, administering an IV push in our homes multiple times weekly just so our child can carry on with simple daily life.  Those IV's don't always go so well.  Think about that.  This is something we need to deal with all before our children go to school in the morning.

Then there is the constant low-laying fear of death that ominously sits in the back of our minds each day.  It's not that we are even conscious that it's there, but it's always lurking, waiting to spring out at the slightest trigger.  I joke about having PTSD every time I see the school district's phone number on Caller ID, but it's really no joke.  We rare disease parents do live with that underlying fear that "this could be it."  

I thought maybe I was a little crazy, a little "off" with that fear until I had my daughter with a rare diagnosis to the pediatrician this week.  It was our usual doctor's day off, so we saw his partner.  When we got there, she stated how grateful she was that my daughter with erythema multiforme did not need a prescription for any sort of antibiotic, because that scares the daylights out of her.  REALLY?  I'm not the only one?  My DOCTORS feel this way too?  You know that you are not being a drama queen or exaggerating when even your pediatricians know that this rare disease stuff is life-or-death!

In fact, I'm really tired of the death part.  We have an incredible dedicated prayer team for the ministry.  I am SO heartbroken with the continual prayers we raise for the children who die too soon.  It makes me sick that we lost Nick to his seizure disorder.  My heart breaks that my friend, Mary, will never hold her Courtney, see her smile, or hear her sweet laugh this side of heaven again.  I'm frustrated that the cancer part of WAGR Syndrome came back and took the life of Amy too soon.  And just yesterday, precious Isaac left his family at the tender age of 4 years old after the affects of 9P Deletion took his life.

This, THIS is why I want you to CARE ABOUT RARE!

We need treatments.  It makes me SICK that our state passed a law legalizing use of CBD oil for medical purposes, but we STILL cannot get access to it.  More children die because of it.  

What's even worse, the infinite lack of compassion for families like mine never ceases to stun me.  Some of us have managed to look so "normal," people have no concern, offer no simple acts of kindness, support or aid.  They have completely blocked out that every day could be our child's last day on earth.  Others of us like Aria and Tahlia are in and out of the hospital way too often.  People develop a certain "compassion fatigue" where they are less and less attentive to these precious families.  Let it not be so, LORD!

WE NEED HELP!   No matter how much of our children's treatment is covered by insurance or Medicaid, there are ALWAYS additional costs that are uncovered.  Tax deductions for mileage hardly cover the cost of fuel and wear on our vehicles for all of those endless doctor's appointments and hospital stays.  The out-of-pocket costs for specialized dental care alone would have bought our family multiple trips to simply visit relatives on both coasts by now.  Our earning ability as parents is also challenged.  With how much work we must miss because of medical emergencies, one parent typically must have part-time or flexible employment just to be a family caregiver, if they can even work at all.

On top of the financial piece, we never stop needing prayer support and emotional support.  Be tender and loving.  Simply ask how we and our children are doing.  It helps to know that we have not suddenly become invisible.  We know our lives are hard for you to handle.  Imagine how hard they are for us!  But we LOVE our children, just as you would if they were yours.  So show some compassion, people.  Don't let this years World Rare Disease Day leave you unchanged.

PRAY:  LORD, today we pray in a special way for precious Isaac, who joined You in his forever glory yesterday.  We are happy for him, but so sad for those who are left here without the joy of his presence.  Comfort his loved ones in a special way on this Rare Disease Day.  Please also bless all of those living with rare disorders, the doctors, researchers, and advocates.  Open people's eyes in kindness towards this serious issue.  Send them to be Your hands and feet to those who are struggling.  In Jesus' Name we pray.  Amen.

~ Barb Dittrich

* SHOW THAT YOU CARE!  Donate at our GIVE RARE page, and invite your friends to donate on March 3rd for GIVE RARE.

Friday, February 27, 2015

Love Even When You Are Rejected

"By this we know love, that he laid down his life for us, and we ought to lay down our lives for the brothers."
~1 John 3:16~

It happened again. We end up at a party, some misunderstanding happens, tears flow in a crowded room and NO ONE seeks to see if we were okay.

This event occurred among what I thought were friends and in the church. We are a people who are learning to love well and were talking about love because of the nature of this particular party. We are people who are pro-love. Yet, at the moment when my daughter and I most needed love, we were let down. Again.

I was devastated. My daughter was devastated. The desire I have in those moments is to just run away and never come back. My mind is assaulted with thoughts of doubt because see, "these people never really cared about you anyway", is how the enemy assaults me.

Do I take the bait?

Emotions are high for me and my daughter. Emotions are non-existent for those around. All signs point to lack of love. Lack of care. Lack of concern from others.

How do I proceed? 


This is the continual dilemma I fear that occurs for parents of special needs children. We find our selves in these situations where we could use encouragement or help. We could use just an assuring nod or look of concern. We could use prayer or a kind word.

People need to know that denying an awkward moment does not make it go away. It actually makes it worse for those who are in the awkward. It is more painful to be denied a moment of care or acknowledgment because it speaks, you are not worth my time to care.

Though I am tempted to run and never look back, God calls us to a higher standard of love. Though we may be denied love from others we share in Christ's sufferings of being rejected. People did not understand Jesus and they all fell away from Him. They were not there for Him when He most needed them, yet He entrusted Himself to the Father and endured the humiliation and rejection because He loved us too much to turn away from His mission. And most importantly He rested securely in the Father's love for Him.

We didn't love but He repaid with love. When we walk that road of the cross, through our troubles, we enter into His sufferings. We experience a part of the Christian life that is deeper. We experience Christ's love in a new way. He after all is enough and really all that matters.

In order to not grow bitter about this rejection, I need to pray. I need to forgive. I need to entrust myself into the Father's hands who hears my cries. I need to love well so it will teach those around me to love well as they watch. My retreat is not for any one's benefit. It is for the sake of Christ we do not forsake meeting together even though it is excruciatingly hard at times. God will reward it. God will teach us to be good forgivers. God's love will never fail us.

PRAY:  Father, please help me to not allow the divisive schemes of the enemy ruin relationships. Lord, help me be an example of love to those around me. Help me not allow a root of bitterness grow up in me. Help me to keep my eyes on you and rejoice that I am counted worthy to share in your sufferings. Thank you that you will use all things for my good and your glory making me more into your image. In Jesus name. Amen.


~Angela Parsley

Thursday, February 26, 2015

God, Do You Really Love Me?

"The Lord appeared to us in the past saying, 
"I have loved you with an everlasting love; 
I have drawn you with loving kindness." 
Jeremiah 31:3


I don’t know when it all started, but Bethany began randomly asking me throughout the day,

“Mommy, do you love me?”

 

It startled me at first because I try to tell my hubby and kids a LOT that I love them.

Hmmm- I placed my hands on her cheeks, making sure she had full eye contact with me, and then I said with a huge smile, slowly and very emphatically, 

“Of course I love you Bethie.  But I not only LOVE you- pause- I adore you!”

Oh, I wish you could have seen the delight shining from her eyes!  The little giggle of embarrassment.  The jig of glee & excitement!

“Awwwww Momma, thanks!” and then, away she went, filled and complete in the knowledge of unconditional love.

This little scenario happens at least once a day, usually at bedtime, or after school, or on our way to school, but it has to be played out with sincerity and passion- like it’s the first time I’ve ever heard her ask.  I always respond like it’s the first time I’ve ever said it.

I’m pretty laid back and rarely get impatient with Bethany.  The other day was the exception. I can’t even remember what she did but I said with some irritation, “Bethany, you need to listen better and obey.”

Her eyes popped open wide and filled with tears.  Her face looked stunned as she stuttered,  

“Bbbbut Momm-  Dddo you ssstill love me and aaa adore me?”

My irritation was instantly replaced with overwhelming love-   God’s love!  I just wanted to literally pour love in her little, questioning heart! I didn't want her to have one shred of doubt that she is loved because she is mine!



 “OF COURSE BETHANY!  I not only LOVE you and ADORE  you—– I will ALWAYS LOVE you and ADORE you!”

 
Pure Relief- then the shining delight in her eyes.  The giggle of embarrassment.  The little jig of glee and excitement! 

 “Awwwww Momma, thanks!”

and away she went, filled and complete in the knowledge and assurance of her momma’s unconditional love.

And so it is with God.


We may not verbalize our question to Him-
“God, do You love me?” 

  But we wonder. 

God, do really love me- all the time-  in my good and bad moments?

The Bible tells us He loved us before we loved Him!! It promises us that NOTHING can separate us from His love.  We're promised that He loves us with an everlasting love and His love never fails.

It is His Father’s heart to pour out His unconditional love to His children.  He speaks to us in a million miniscule ways- through the beautiful faithfulness of sunrise and sunset, the sweet fragrance of wild flowers, setting music in all of nature, the stars twinkling His message of creation, people He has brought in our lives to show us love, and His Word and Holy Spirit that reveal His presence and goodness to us, His children.

Even when He has to correct us; discipline us- guide us- lead us- turn us around to go the right direction- let us face life consequences- even then- we should know- His Father’s heart is holding us and saying what I say to Bethany-


“Of course child of mine.  I not only LOVE you- I Treasure you—–My love for you will never change- it is an everlasting love that will endure forever.”

 

Pray: Oh Father. help us believe Your love will not let us go! Open our understanding to how deep and wide, forever and never giving up, Your love is for your children.  In Jesus wonderful Name- Amen.

Wednesday, February 25, 2015

The Cure for Fear


 There is no fear in love [dread does not exist], but full-grown (complete, perfect) love turns fear out of doors and expels every trace of terror!
1 John 4:18a AMP

My girls fell in love with an animated movie that came out a couple of years ago. Unlike many other parents, I haven't minded the repeated viewings, and I sing along to the soundtrack regularly when they're singing and dancing in the den. The climactic scene in the movie involves a frozen heart and the only cure---true love.

Like one of the main characters, I often find my heart frozen, but with fear instead of ice. When my life spirals out of control, and it hits me all over again how little I actually control in my life, I am seized anew by fear and anxiety. 

Even when things are going well, sometimes I find myself waiting for the next thing to happen, living in dread of something that isn't even on the horizon. My imagination can go wild thinking of things that would affect our jobs, income, health insurance status, ability to provide the medications and therapies our younger daughter needs, and on and on. While God has never failed to provide for either of our children, I still struggle with doubt and fear.

If I really focus on God and His Word instead of on circumstances, I can break through to the peace that guards my heart and mind (Philippians 4:6-7), but it's all too easy to slip back into worrying and fretting.

I think Laurie Wallin hit the nail on the head when she posted this graphic on Facebook:


For me, all this fear comes down to one thing: I don't trust God. I don't trust Him to be good even when everything seems terribly bad. I struggle to believe in His goodness and love when I can't see how He's going to work everything out and keep us afloat. I find myself like the father in Mark 9:24 (AMP) - "Lord, I believe! [Constantly] help my weakness of faith!" And all this despite the fact that He has never failed us and has proven Himself faithful time and again, even when we have been unfaithful.

1 John 4:18 says the cure for this fear is love, and I'm desperate for the cure for my frozen heart. I pray regularly that God will help me "to grasp how wide and long and high and deep is the love of Christ" (Ephesians 3:18 NIV) so that I can be free.

Sometimes I think the best solution might be to sing a simple children's song over and over until it really sinks deep into my heart and mind: Jesus loves me. This I know . . .

Pray: Father, please help me to fully understand, deep down, how much you love me so that I can be set free from fear and anxiety. Help me to trust you more and to set aside my limited understanding of our circumstances to rest in your care. Amen.

Tuesday, February 24, 2015

Focus on Marriage, Part 2: Communication 101



Communicating within marriage is a key tool for resilient relationships.  What is communicated?  How is the message shared and received?  As clergy, some of the key skills I review with couples in pre-marital counseling are tools for communication. Engaged couples can’t imagine this will ever be a problem.  Yet, we’ve all witnessed at restaurants the quiet couple at the table who seemingly have nothing to say to each other, eating silently and spending more time on their phones than in communication with each other. What happened?
Good communication, as with any skill, takes intentional practice. In busy lives, communication with a spouse can become shorter and more infrequent over time, especially when there are children. It is easy to let good communication skills slip.Some surveys indicate that couples can spend as little as 15 minutes a day in real communication with each other. Here are a few suggestions to help improve the quality and quantity of communication.
Communication 101
 Set aside time to talk. In busy schedules time for important conversations is easily lost.  By important, I don’t mean wills, and trusts, though they are important too.  Rather, what is important in your spouse’s life? What is important to you? What are your long term dreams as a couple? Try to set asaide 30-45 minutes a few times a week to talk.
 Have an attitude of gratitude. Express appreciation when your spouse does something considerate or helpful, like providing a sleep in day, washing dishes, filling the car with gas, and so forth. Simply saying thank you for the way each person fills the everyday roles in the relationship can help build up the marriage.
 Talk about the things that worry you.  Many parents hold on to grief, guilt, and anxiety about the future.  There can be a sense of embarrassment in sharing these feelings inside the marriage. “I wish I could say to my spouse that I am scared about….” Or “I have never said it out loud, but I feel our child has a disability because of me.”  Communication about these secretly held feelings can be very healing, releasing an emotional burden.
 Express your needs or wants clearly. Be specific when communicating with your spouse. Avoid thinking that he or she can read your mind. If you have a need or expectation, remove the guess work and let your spouse know.
 Model Respectful Listening. Avoid multi-tasking, especially when the topic is serious in nature. Reflective listening is also a good tool.  Repeat back in your own words what you hear your partner say.
 Monitor your mood. No one is in a good mood all the time. If in a bad mood, why is that? Hunger, fatigue, illness, time, expectations? Let your spouse know if you are having a bad day and why. It may help avoid an argument.
The rib that the LORD God had taken from the man he made into a woman and brought her to the man. Then the man said, "This at last is bone of my bones and flesh of my flesh; this one shall be called Woman, for out of Man this one was taken." Therefore a man leaves his father and his mother and clings to his wife, and they become one flesh. (Genesis 2:22-24 NRS)
Loving God, thank you for the gift of words and expression. Help us to use those gifts to build up our relationships. Amen
"Golden Wedding Ring"  by Danilo Rizzuti courtesy of  FreeDigitalphotos.net

Monday, February 23, 2015

The Man in the Mirror


“O God, you are my God; I earnestly search for you.
My soul thirsts for you; my whole body longs for you
             in this parched and weary land where there is no water.”
(Psalm 63:1-2)

I know you.

I recognize your face from when we were shaving this morning.

You’re the man in the mirror.

I see things in your reflection that others don’t see or grasp.

Everyone sees that you are a special-needs dad. They see your smiles, they hear your words, and they enjoy your sense of humor and quick wit.

But when we shave in the morning, I see you without the mask.

Today was pretty rough wasn’t it?

Snowed in with a ravaging case of cabin fever, you sat and endlessly looked at pictures of typical dads with their typical kids playing in the snow.

Sledding, building snowmen, throwing snowballs-- all the stuff dads do with their kids when it snows in the South and schools are closed.

You died over and over again today didn’t you?

Every picture was another reminder that you and your son can’t participate in those activities because of his disabilities. Every Facebook post cut your wounds open again and you bled for the life you once envisioned, and can not have now.

You even shed some silent tears, as you remembered your own father taking you sledding as a boy.

You’ve been doing that a lot lately, haven’t you?

Last week, when your son was going to his first ever dance, a special-needs prom, you got him a tuxedo and tied his fancy tie for him in preparation.

For a few minutes, you basked in the moment.

A proud moment.

Every dad remembers the day his father helps him knot his first tie. You were meticulous in the details. You were so proud.

For one moment, you felt like a typical dad again. You participated in a moment to which all dads can relate. You even got choked up and you leaned over and kissed your son’s forehead.

But when no one else could see it, I saw the Black Dog walk into the room. I told you I see things only the man in the mirror sees.

I saw the Black Dog wrap itself around your mind, and your momentary joy was snatched away from you in an instant.

You started thinking about how your son will never wear a tie at his wedding because he will never get married. That thought made you think about how you will never have grandchildren, as he is your only child.

Your thoughts spiraled out of control after that as the Black Dog began to howl.

No one else heard it. But it was deafening to you, wasn’t it?

It reminded you of the question you ask yourself every day.

I hear you ask it to yourself when we shave in the morning. I hear you think about it at night when everyone else is asleep, and you lie there alone with your thoughts. The Black Dog at your feet.

I know it haunts you.

“Who will take care of your son after you die and are gone?”

“He needs me, what will he ever do without me?”

The man in the mirror has a choice to make. We all have a choice to make.

Today the man in the mirror made the right choice.

The Bible is full of stories where God send someone into the wilderness in order to ultimately have an encounter with God.

Time and time again, people experienced periods in the wilderness only to eventually find God’s presence, God’s peace, and God’s protection ad provision in the dry deserts of their lives.

There are two responses to times wandering in the desert. You can choose to be grateful, or you can choose to be angry and bitter.

One choice leads to life. One leads to death.

The man in the mirror sometimes ventures into the wilderness.

“O God, you are my God; I earnestly search for you.
My soul thirsts for you; my whole body longs for you
in this parched and weary land where there is no water.” (Psalm 63:1-2)

Today the man in the mirror chose life. He  chose gratitude as the path out of the wilderness.

He chose to celebrate the experiences he did have with his son, and not lament the experience he will not have. He thought about their time today swinging, smiling, and eating popcorn together. A day that ended with 45 minutes of singing to his son and speaking blessings over him as they prayed.

He found joy, contentment, and happiness in the simple fact that God gifted him to be a father. God chose him and called him to be a special-needs dad. He rejoiced that in the wilderness moments of his thoughts, God always show up and always provides.

Tonight, the man in the mirror will vanquish the black dog outside the house of his thoughts.

Tonight, he will lie down and say to God, “Thank you for waking me up today, and giving me one more day to be my son’s dad.”


And he will be grateful.


PRAYER: "Thank you God for waking us up today, and for giving us one more day to be the parents of our children with special needs."

Friday, February 20, 2015

Ice Breakers with God

"Corporate People Toasting Coffee at Cafe" Image Courtesy of Stockimages/freedigitalphotos.net

Search me, God, and know my heart;
    test me and know my anxious thoughts.
See if there is any offensive way in me,
    and lead me in the way everlasting. 
Psalm 139: 23-24 NIV

We often think our prayers have to pious and ornate.  We listen to others pray and nod in agreement and think, “Wow, THAT is a good prayer.”

But prayer isn’t anything “special.”  It’s a conversation with God!  In all our earthly relationships we find that conversing with someone is MORE difficult in the beginning of a relationship.  But, as we continue to talk, we grow more comfortable and learn more about them, which leads to more conversation and a greater closeness with the other person.

Maybe, to get comfortable with prayer, we need some Ice Breakers with God. 

How about the old stand-by Three Truths and A Lie?

God:  I love you, I created you, I sent my son to die for you, aaaaaaand…I covered the world once in a flood.

Me:  Well, it’s really hard to believe you love me and that you sent your son to die for me; buuuut, I’m going with the flood thing.  That just doesn’t seem possible.
God:  Sorry, they’re all true-I can’t lie.

Hmmph…on second thought, forget about the ice breakers.

How about just some “conversation starters?”  Can we pray in answer to some of these questions?

  • When did you first meet God?

                God, you’ve been with me since the day you created, and I’m so thankful that you came into my heart when I was 8 years old. Thank you for standing by me and carrying me through some of the darkest times in my life.

  • What keeps you up at night?

                God, I just worry so much that we’ll never get approved for Medicaid.  Can you put peace in my heart that, no matter what happens, you will provide for us and I have nothing to fear?

  • What are you thankful for?

                God, thank you for my amazing family and friends.  Thank you for the beautiful area in which we live.   Thank you for this journey you have given to us.  Continue to bless us with your presence and strength.

  • When do you feel God the strongest?

  • When do you NOT feel God?

  • Whom do you need to forgive?

  • For what things do you need to make amends?

You see, prayer is us just talking to God, continually, without ceasing.  It is one of the BEST ways to get to know Him better.  

Pray:  Father God, thank you for giving us such an intimate relationship with you that we can come straight to you with any of our needs, or even just to talk.  What a tremendous gift that is.  Amen.

Thursday, February 19, 2015

FOOTPRINTS ON THE TABLE???

“Praise be to the Lord, to God our Savior, who daily bears our burdens.”  
Psalm 68:19, NIV
 

Many of us have read the poem “Footprints in the Sand” written by Mary Stevenson in 1936. She writes about walking along the beach with the Lord and realizing during the roughest times in her life there were only one set of footprints in the sand.Then the Lord tells her, “My precious, precious child. I love you and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, it was then that I carried you.”

I was thinking about this recently after noticing, of all things, footprints on my pub table. Footprints on the table? Not such a well-known saying! Why would someone be walking around on that?

Enter Luke. My 10-year old, tall, 85 pound special needs guy who is YET AGAIN going through a climbing phase. Being February in Illinois he can’t climb around outside so he gets inventive in the house. When he decides to fly into my arms from the tall table like he did when he was 2 both of us end up in a heap on the floor. Thankfully, no broken bones for either of us yet. 

As I have to tell Luke again and again to get down off the high table, remembering that God carries me and “bears my burdens daily” is like slowing down and taking a big, deep breath after Luke recovers from a screaming, crying, head-banging meltdown.

Staring at his toe prints on the dining room table is one of the unique things I get to witness because of Luke. Another thing he showed me, by staring intently at them, is how cool bubbles in a hot tub look. I hadn’t seen that perspective before.

Not long ago he cracked up Katherine (our friend and Luke’s respite worker) and I when he came downstairs, took a shirt out of the laundry basket and proceeded to put it on like a pair of pants and then wander off. Unexpected for sure!

As a parent of someone with special needs I should not rush through life and miss these joyful happenings.  And there really is no need for me to quickly erase Luke’s foot smudges off our dining room table.  They announce Luke’s awesome and wild presence in our home--a giggle-fest-break from the storm of him not being able to talk and the other hard things that autism brings to Luke and to our family.  Who doesn’t need a good laugh now and then? 

Prayer: Lord, thank you so much that your word tells us that you take on our trials EVERYDAY.  And thank you for the laughter you bring us in our lives.

~ Deb Abbs

Wednesday, February 18, 2015

WARNING: Objects May Be Farther Than Appear

Jesus was led by the Holy Spirit to a desert. There He was tempted by the devil. 
~ Matthew 4:1, NLV ~

Have you ever been to our nations amazing capital?  Adorned with rich history, meaningful monuments, and matchless art, the heart skips an extra beat when an American tours the hallowed halls of our nation's origins.

Having been in Washington, DC numerous times, I can share with you from personal experience that everything you witness around you is much farther away than it appears to the eye.  I chuckle to myself thinking of the time I was in the capital with my eldest daughter while I was between knee surgeries.  Touring all of the sights we could between our advocacy meetings, we made one major choice that was not too wise.  After touring the Washington Monument, we looked down the incline to see the World War II Memorial right across the street.  Capable in spite of the large, hinged knee brace I was wearing, we decided to walk over to take in this meaningful sight.  Afterward, we wanted to see the Lincoln Memorial.

"Should we walk?" I questioned as we glanced across the large reflecting pool.

"Sure, Mom.  It's just right there.  Why not?" my daughter affirmed.  And so we set out.

Let me tell you that one-half to three-quarters of a mile walk seemed like the longest walk of my life!

Dressed in attire appropriate for meeting congressmen and senators, neither of us were wearing proper walking shoes.  Add the pain of my knee wrapped in a bulky brace, and the walk was miserable.  Eyes fixed on that beautiful monument ahead of us, I just wanted to get there, but the blistering journey took forever.  We would walk and have to make stops along the way to rest the skin-abrading of our fancy shoes.  And upon arrival, we looked up the mountain of all those stairs.  Oh, the exhaustion!
Recently contemplating the long road of parenting a child with chronic illness or special needs, I couldn't help but think of this Washington walk.  At times it seems like the destination is within reach...  Until we realize it is not.  The journey is long, difficult, painful.  We just want to get there.  We may limp along at times, stopping to nurse wounds, then press on.  We may get through one long stride only realize that we have only reached the base of the hill.  There is a steep mountain yet to climb.  We take a deep breath, putting one foot of the other, making the ascent because we know there is something glorious at the top.  

Friends, let me encourage you today by letting you know that Jesus made a similar journey.  In fact his was worse.  Have you spent 40 days in a sun parched desert?  Our Savior was no stranger to suffering.  He was tempted in every way we are, but still did not sin.  (See Hebrews 4:15)  Hunger, thirst, exhaustion, and the temptation to give up plagued him.  And as if the desert time was not enough, consider him in the Garden of Gethsemane, fully aware of what he was facing.  After all he had endured up to that point, he still had his own "mountain" to climb.  But he pushed on with the pinnacle in mind.  Hebrews 12:2-3 tells us that we should recall all of this, so that we do not lose heart ourselves.

Take heart today!  Persevere in Him.  He who endured the very worst that this earth has to dish out will be there for you.  He will support and strengthen you even when "objects may be farther than appear."

PRAY:  Jesus, thank You for subjecting Yourself to all the pain, suffering and hardships of this life, so You could understand us.  It is so comforting to have a God who knows our walk.  Thank You for helping us to press on until we reach the glorious goals You have in mind for us.

~ Barb Dittrich

Tuesday, February 17, 2015

Focus on Marriage, Part one



Last week I conducted a small focus group of special needs parents on the topic of marriage.  Two of the most rewarding and most challenging relationships we enter into are those of spouse and parent. Both relationships are full of wonderful rewards, surprises, and joys. They may also be filled with heart-break, miscommunication and challenges.  When a child with extraordinary needs is part of this dynamic, the challenges within relationships can increase exponentially.

Based on the input from my focus group I will be offering to a support group that I lead three weeks of strategies to help strengthen marriages in the areas where they expressed the most concerns.  Keep an eye out the coming weeks for ideas related to communication, careers and staying connected.

No one has a perfect marriage, including me.  For that I am grateful. Perfect is over-rated.  Perfect leaves no room for learning, trying new things, exploring life together, making mistakes, and finding forgiveness. Real marriages need work and attention, even more so for those with special needs children. While we are not perfect, we are made for relationships from the moment we are born. Relationships that matter are worth our time and attention.

The rib that the LORD God had taken from the man he made into a woman and brought her to the man. Then the man said, "This at last is bone of my bones and flesh of my flesh; this one shall be called Woman, for out of Man this one was taken." Therefore a man leaves his father and his mother and clings to his wife, and they become one flesh. (Genesis 2:22-24 NRS)

Loving God, thank you for the relationships in our lives that sustain us, filling us with love and hope. Help us to strengthen all of our relationships and equip us to repair the ones that are fragile and in need of healing. Amen



Golden Wedding Ring by Danilo Rizzuti courtesy of  FreeDigitalphotos