Monday, March 2, 2015

LOL, HaHa, Sooo Cute, :], ROFL

Proverbs 17:22a  “A cheerful heart is good medicine.”  NLT

On a lighter note today we could all use some cheering up.  It’s been a long winter and spring still seems a ways off.  Many of us can say this by just looking out the window, but many can also say this on an emotional level. 

Even when David was so sick, he had that cheerful heart.  In the picture above he’s hugging his snowman.  He had a way of always cheering people up with his infectious smile, his little random acts of kindness, or his way of letting people know what’s really important in life when they would be stressed. 

I remember how he’d go out of his way to help complete strangers with groceries, holding the door open, or sharing his livelihood with them.  One time he had just moved into an apartment and heard that a neighbor didn’t have money for food.  He not only gave them some food, but also gave them money to buy more food.  He didn’t have much, but he gave anyway. 

On any given day he’d be doing simple things just to cheer someone up.  Like the picture here where he just made a funny face to add some cheer to a normal day.


He was always the first to volunteer for just about anything put in front of him.  I know we all can learn a lesson here from him.

As you and I prepare for Easter, let’s pass along God’s love with a cheerful heart.  It can be as simple as a smile or as much as paying for someone's groceries.  I am confident when we do that we’ll feel more cheerful too.

Prayer:  Lord, Help me to be cheerful and when I’m discouraged help me to trust in you.  Send those cheerful heart people to me too, especially when I need them the most. 


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 ~ 


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...

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