Wednesday, May 31, 2017

Waters Rising - Returning Home to God

photo courtesy of
"When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you..."
Isaiah 43:2a, ESV

My husband and I recently went out on kayaks at night with our nephew. We were not gone more than twenty minutes when we realized that rowing against the pull of the current was getting us nowhere and decided to come in. We were shocked to find that the path leading back to the house we were staying in was completely covered with water. In those few short minutes out, the tide had come in and the water rose right up to the end of the dock.  For a split second I was thinking that I'd rather just stay on the dock all night than walk through the water, but what if the water kept rising? Not a good plan! Luckily, it was not too deep to wade through, but there was something unnerving for me about walking through the water in the dark to get back to the house. I could see the house ahead, but it took a mustering of courage to walk into the dark toward it. The quick short path on the way out was not the same path on the way back. It was much harder to go back. I suppose many scary "tide coming in" stories could be inserted here. Ours was not dramatic, but it definitely got me thinking. 

For parents raising children with special needs, the path to parenting is often much easier in the planning stage than the execution stage. When we found out our daughter had multiple special needs that would require a lifetime of care, I definitely felt like the waters had risen quickly around me without me even realizing it. Only, there was no turning back. For better or for worse, in sickness and in health (of our children even ), we were, and are, committed to God and to our family. So we were committed, but I still found myself drifting away from God. It was easy to skip church because our daughter was sick, or I was too tired. I could make a million excuses, and my husband was a pastor! Reading the Bible every day became just another to-do that I couldn't do. Genuine fellowship with believers required energy I didn't think I had to spare, and prayers occasionally felt futile. But when you find yourself stranded and looking back to where you need to be, you can choose to stay there, on the dock and face an even scarier fate of rising waters, or take a step back in the right direction.

The path to God is sometimes like our midnight watery walk back to the house. You are often unsure of how you got so far away so quickly. Like the house at the end of our path, you can see God and where you want to be. But getting back there is harder than it looks. It takes courage to step off the comfort of the dock into the water. But just like we moved, one foot in front of the other, you can choose to keep moving until you're home. Remembering the words of the Lord in Isaiah, you can keep pressing on. 

But now thus says the Lord,
he who created you, O Jacob,
    he who formed you, O Israel:
“Fear not, for I have redeemed you;
    I have called you by name, you are mine.
When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.
(Isaiah 43:1-2, ESV)

If you, like I have before, find yourself apart from the Lord, take the first step home. 

Jeremiah 29:12-14 (ESV) says, 
"Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart. I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile."

Pray with me: Lord, bring me back to you. Give me the courage to put one foot in front of the other and to pursue you with my whole heart. Help me to seek you, and to stop making excuses. The waters are rising and I need to come home. 

Tuesday, May 30, 2017

The Love/Hate of Summer

Copyright: designpics / 123RF Stock Photo
God is not a God of disorder but a God of peace.
~ 1 Corinthians 14:33a, GW ~

Remember the days when you could sit in a lounge chair in the sun, reading a book and sipping on iced tea on a warm summer day? Me neither. It seems like five lifetimes ago that I enjoyed such things.

While fond memories of summer, enjoying the outdoors, popsicles, sunshine, and sandy beaches all still quicken our hearts, the season becomes a more stressful dichotomy for those of us raising atypical kids. Most people do not understand how torn we feel about a season that is much like a warm, blissful weekend that never ends. 

There is a part of our spirit that lightens as we consider not having to stay on top of the stress of academics and homework. The pressure of school peers and IEPs are on hold for now. It's okay if everybody sleeps just a couple of minutes later in the morning and stays up an hour later at night. Parks, picnics, bubbles, and beach balls all bring delightful change to the usual demands of our family schedule.

But that's too often where it seems to end.

Summer is a time of incredible pressure for parents like us. If your kids are anything like mine, the lack of structure sends the dysregulation into overdrive. Sleepless nights increase. Meltdowns multiply with a diet that includes a few too many strange foods and perhaps a bit too much processed sugar. 

It's all us! There is no break while the kids are in school unless, of course, you were fortunate enough to qualify for Extended School Year (ESY) or have them in summer school. But even those hours are too few and abbreviated. 

The demands are high and the days are long. We need to get them in for their annual visits to specialists and get them registered for special camps. This is prime time for scheduling surgeries for our kiddos.

Social demands abound for all of us in the summer months. Trying to prepare our kids for reunions, and weddings, and graduations is no small task. You can bet there will be hurtful remarks from extended family or ignorant friends. These settings just lend themselves to that.

Is it any wonder the school year suddenly looks so attractive?

These are the days I have learned to cling to 1 Corinthians 14:33. While Paul's words are written in regards to orderly worship within the church, they reveal God's character. I am so grateful, relieved, and hopeful that He can make order out of my chaos! And He reveals in this passage that His bias is towards creating routine and structure.

God endorses establishing boundaries in my family's summer schedule. I learned over the years that those boundaries actually brought our family freedom. Having a rhythm that we stuck to more often than not helped us to control our hours rather than our hours controlling us. This day was library day and that day was time at our local accessible playground each week. I created chore charts and stuck to bedtime expectations. We have had to shorten visits or politely say "no" to some invitations we knew would create problems for our family. While we may have felt short-term disappointment at not living the same way everyone else does during these summer months, long-term it gave us great relief and helped us to enjoy the season much more.

Although it can seem daunting, God is on our side. The One who ordains order will help us get a handle on our summer if we surrender our expectations and align ourselves in agreement with Him.

Many are the plans in the mind of a man,
    but it is the purpose of the Lord that will stand.
- Proverbs 19:21, ESV -

Take heart, my friend!

PRAY WITH ME: Lord, while summer should typically be so delightful, it so often overwhelms me as a parent. Calm my flustered heart and mind. Direct my steps. Make order out of our chaos so we can enjoy Your blessings in this season.

~ Barb Dittrich

Monday, May 29, 2017

Reclaiming the Blessing for a Birth Date

By Joey Gannon from Pittsburgh, PA - Candles, CC BY-SA 2.0
After this, Job opened his mouth and cursed the day of his birth. He said:
“May the day of my birth perish,
    and the night that said, ‘A boy is conceived!’
That day—may it turn to darkness;
    may God above not care about it;
    may no light shine on it.
May gloom and utter darkness claim it once more;
    may a cloud settle over it;
    may blackness overwhelm it.
Job 3:1-5, NIV

I read this passage in Job a few years ago and thought, "God, those were some harsh things Job said! The man cursed the day he was born."

At one time, birthdays were important to Job's family. In Job 1: 4-5 it says, "His sons used to hold feasts in their homes on their birthdays, and they would invite their three sisters to eat and drink with them. When a period of feasting had run its course, Job would make arrangements for them to be purified."

After Job experienced great loss, he seemed to wish he had never been born. His sadness was so deep that it's almost hard to read his words.

That's when God spoke to me about how to apply this scripture in my life: Do the opposite.

That seemed simple enough. If Job cursed the day he was born, then I needed to bless the day I was born. Every year since that revelation from God, I have taken time on my birthday to proclaim blessings on the day. Sometimes, I will read this scripture over myself and change the words to be the opposite.

Yesterday was birthday number 37 for me, so I had an opportunity once again to say that my life is blessed and so is May 28th. My birthday blessing is easy. I found out my daughter's proclamation was harder.

The first time I said her birthday blessing, I found out how much hurt I still had. I have never cursed the day she was born, but there were events that happened that made it seem cursed.

The day she was born started out like any other delivery story. It began with an abrupt water breaking, which was followed by a somewhat speedy drive to the hospital. There I learned my hunger pains from the night before were actually labor pains. It was my first pregnancy obviously.

Just a couple of hours later, there were nurses and a doctor telling me to push and that magical moment when my eyes met my daughter's for the first time. There were the first glimpses and cuddles of my daughter by her grandmas and aunt. It was the start to a beautiful and special day.

That's when the story took a different turn. Shortly after birth, there was a frustrated breastfeeding attempt because my daughter didn't seem to know how to latch or suck. In fact, her color turned blue during the feed. She was kept in the nursery for monitoring and warmth while labs were taken too. That evening I found myself curled up in the hospital bed sobbing as "genetic condition" and "heart murmur" were said for the first time. The day ended with her in a NICU bed with my husband and me by her side wondering what was happening.

That day was 11 years ago. Since then, I have enjoyed celebrating her birthdays and love to see the excitement on her face. But, revisiting the memories of the day she was born was something I never wanted to do. I didn't want to go back to where a very young and confused woman tried to grasp the reality of the situation of a newborn with Down Syndrome, a heart defect, and congestive heart failure. But, that is the part that God wanted to touch.

When it came time to pray my prayer of blessing over her life and the day she was born, I realized how much healing needed to come. I needed help seeing past the doctor's reports and the scary events that transpired years earlier.

Reclaiming blessings on the day she was born was healing for me. I wanted that day to be remembered as joyous because my daughter has brought joy to our family. The surprise of finding out my baby wasn't healthy is long gone, and my emotions have changed for the better. Why can't I look back on that day with a new perspective? That was what God was trying to teach me through all of this from Job's story.

What about you? How do you look at the date your child was born? Are there other dates on the calendar that need blessings reclaimed because they have become tainted? Ask God to show you how to move beyond the pain and bring healing back to those days.

Let's pray.

I thank you for Job's honest words found in the Bible. Job, in his pain. cursed the day he was born, but God I ask that you bless the day that my children and I were born. Let the hard parts of that birth date fade into the background. Shine your light and your love on that date. Let it be remembered as you see it, God. Let the day that brought new life into this world be blessed and let joy settle down upon it. Amen!

Sunday, May 28, 2017

For Love of God and Country ~ #SacredSunday

We pause this weekend to humbly and gratefully remember those who loved like Jesus, laying it all down so that we might truly live.

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Friday, May 26, 2017

Remembering Jeff

I think it all began over football in 2012. Being a relentless Packers fan (and owner), I would continually spout off on Facebook about NFL activity each week. As a member of the same contributing group of writers as I, Jeff Davidson saw my posts and eventually had to jump in with his comments. 

Prior to that I hadn't really known this fella, but with his characteristic spunk and sass, we became fast friends.

Having read his touching words via his own personal blog, Goodnight Superman, I knew that I wanted to invite Jeff to contribute to our devotional blog when we opened it to other writers in 2013. His relationship with Jesus was something that other dads walking the same path so deeply needed. And to this day, I haven't seen another man in this nation who has a heart for dads raising exceptional kids like he did.

If parenting a child with a disability, chronic illness, or special needs is isolating, leading a ministry to these families is even more so. There are few I have been able to commiserate with and consult in my role over the years who truly "get it." Having both answered God's call to serve around the same time, Jeff and I found we had much in common. Our organizations were around the same size. While he was in the South, I was here in the frozen North. Jeff was always far more of a visionary than I, having the people and financial resources to make many of those visions become reality. Yet, he was never competitive or back-biting like so many sadly are in ministry. 

Jeff introduced me to his beautiful Becky via video conferencing and our friendship continued to grow. We shared ideas and problem-solving. The two of them never hesitated to share systems they were using that worked and encourage me as a fellow leader. It was my tremendous privilege to lead a Facebook study of his book, No More Peanut Butter Sandwiches, with Becky shortly after it was released. Ever the humble and grateful one, Jeff just had to make sure that I saw that he had listed me in the acknowledgements of the book. It is I who was truly humbled -- He was always so much more than I could ever hope to be as a leader.

I was also very honored when he and Becky flew me down to speak at their By-The-Brook Retreat in the summer of 2015. It was so great to hug them in person and meet so many wonderful people at the event. I seem to recall that Jeff had just overcome one of his many medical episodes right before that retreat. Those issues always seemed to loom over him and at the most inopportune times.

Despite the trials, the laughter and sass between us continued to give us buoyancy as we served. At one point, we had a hilarious battle between Chick-Fil-A versus Culver's -- South versus North. When he heard a Chick-Fil-A was finally opening within driving distance of my house, of course he had to tease by sending a gift card. I did the same when Culver's opened in his area. He DID have to finally confess that the butter burgers and frozen custard are matchless.

Living as far apart as Tennessee and Wisconsin became much more difficult and painful as our friendship grew. I wanted to do so much more for Jeff and Becky than merely send our signature TLC baskets and gift cards from Snappin' when the medical issues were unrelenting. As a fellow parent of warrior kids, my inclination was to get on a plane, roll up my sleeves, and give them practical help. Prayers have continued to pour over them both personally and from our confidential prayer team throughout the years. 

If I have any regrets, it would be that I let the busy-ness and demands of life get in the way of talking to Jeff more this past year. He was a light in the world, even in spite of his trials. I always came away from conversations with him feeling brighter in spirit.

I am honored to have called Jeff Davidson a colleague, friend, mentor, and brother in Christ. Until we meet in heaven again soon, I pray that God will show him what a difference he made in the world around him. And may the Lord also guard, guide, and comfort Jeff's precious Becky and Jon Alex in his absence.

Here are some of the highlights of Jeff's past contributions to this blog...
  1. Just Leave It There - March 10, 2014
  2. A Christmas Letter to Mom - December 9, 2013 (This was one of our top posts for the year!)
  3. Here In The Room - July 14, 2014
  4. I'm Overwhelmed! - August 31, 2015
  5. In all things? - November 25, 3013
  6. Taking a Walk on the Dark Side - June 27, 2014
  7. No More Peanut Butter Sandwiches - February 10, 2014 (The precursor to Jeff's October, 2014 book release NO MORE PEANUT BUTTER SANDWICHES)

The memorial service for Jeff Davidson will be held at The River Community Church of Cookville, TN on Saturday, May 27th, 1:00 PM, CST. The service will be broadcast via Facebook LIVE on Rising Above Ministries' Facebook page.

Leave your memories and tributes to Jeff Davidson 
in the comments below.

The Potter and the Clay

In Isaiah 64:8 (NLT)  Isaiah prays:
And yet, O Lord, you are our Father.
    We are the clay, and you are the potter.
    We all are formed by your hand.

Sketches, self-portraits, papers, and charcoals, and pastels – these are some of my most treasured memories from elementary art class. It was a smattering of experimentation in mixed media, learning shapes and proportions, and testing my skills. I loved the smell of fresh paper, the texture of the glue, the splatters on my smock, and the unbridled joy of creating. And then there was pottery.  I could barely contain my excitement at the thought of a creating with clay.

First, I had to pick something that I wanted to create. Then I had to sketch it on paper. I had to figure out how I was going to get from a lump of clay to that idea in my mind. I had to know what tools to use and then I had to paint it, too.  And so I made my pottery. The teacher fired it, and I painted it, and the teacher fired it again. It was finished, and I was so proud of my work.

I don’t know why I kept this unusual bowl with a rainbow and a leprechaun sitting on a pot of gold; I suppose it was a tangible reminder of that amazing sense of accomplishment that I had designed something unique and brought it to fruition. For a few brief classes, I was a potter, and I brought forth a piece of art from my very own lump of clay. 

Don’t you think that God has that same sense of pride and accomplishment when He looks at you? The Bible reveals to us that God is just like a potter, and we are His clay. Just like a potter, God designs us with a purpose, a plan, a beautiful creation with gifts and skills and hopes and dreams. Just like a potter, God is not afraid to get His hands dirty in the muck and the mud of our lives. He is not somewhere, watching us struggle from a distance, but He’s right here, with His hands holding the clay, molding and shaping us as if the circumstances of our lives are His tools. And He adores His own creation. 

Some days, I can scarcely breathe thinking about the ways I’ve messed up as a mom. Some days, I get caught second guessing my choices and ruminating on the what-ifs. What if we had scheduled more physical therapy? What if we had chased down a different speech diagnosis? What if we had avoided medication? What if we had made better choices and fewer mistakes? What if we are going about it all wrong? Perhaps the outcome would be better, my children would be better, my hope for their future would be better. 

As a parent, I think I’ve done more wrong than I’ve done right. I feel judged by therapists, ignored by doctors, and lost in a sea of paperwork. I’ve lost friends who just cannot understand. I often think that I am too far gone for God to redeem the parenting mistakes I’ve made. And it’s hard for me to imagine that I’m not too messed up to be a beautiful vessel for Him.  I’m tired, and I’m worn, and my color has faded away. I feel more like a broken glass than a beautiful vase. 

But here’s the thing about God. He made each one of us beautiful. He made us, He formed us, He fashioned us with the skill of a potter, into something beautiful and special and amazing. We are a piece of pottery that pleases Him. And God continues to use our circumstances to form us into a vessel that is beautiful and more like Jesus. He doesn’t allow us or our children to go through negative things to harm us, but in His infinite love and mercy, He takes the things that happen to us and helps us be shaped more beautifully by them. 

Do you know what a potter can do? When the clay is placed on the potter’s wheel, it can have blemishes or mistakes. But if the broken pot is still in the potter’s hand, the potter can squish that pot back into a new lump of clay and fashion it all over again. Don’t think you are ever too messed up or too far gone to be used by God. Because the one who created you can re-form you into a brand new, beautiful creation. He can get right back in the mud with you and reshape you into something beautiful and special and purposeful again. God loves you so much that He isn’t afraid to get His hands dirty to make you into a beautiful precious vessel that belongs to Him. 

And that is my hope in this special needs parenting journey -- That while I may make mistakes, and make wrong choices, I know that God is the redeeming potter who can refashion me into something new and beautiful again. And just as God is designing that piece of art that is me-in-progress, God is also designing, forming, and creating a piece of art that is my child. We don’t have to make ourselves something amazing or beautiful, we just have to help each other stay in the Potter’s hands. No matter how much we mess up, He can and will make us beautiful again. 

Dear God, Somedays I feel like a cracked and broken piece of pottery; good for nothing but the trash bin. But the truth is that You are the potter and we are the clay. Please God, re-form me, remake my spirit, and give me new strength and beauty to live this life that You have called me to live.  Amen 

Amanda Furbeck 

Thursday, May 25, 2017

The Little Things Add Up

“Why, even the hairs of your head are all numbered. 
Fear not; you are of more value than many sparrows.”
Luke 12:7 ESV

I have been privileged to become immersed in disability ministry over the past five years. I do not have a family member affected by disability but am blessed to say that I have gained many friends who are affected by disability. Admittedly, I came into disability ministry focused on the big picture as that is my natural inclination. Can I design an event that serves families well? Can I oversee a huge training conference so that more churches hear and become aware? Can I grow my department at Joni and Friends at a breakneck pace?

While these might not be bad goals to have and I know that my heart was sincere, my new friends have taught me a different way to go about ministry.

There is often more power in a whisper than a shout!

There is often more lasting influence through a conversation than a presentation.

There is often a greater chance for relationship over coffee than through an email.

Jesus spent the majority of His time on earth with his small group, the disciples. And even then, His inner circle received even more relational time. While the preaching and teaching and healing of the crowds was a major mark of His ministry, Jesus understood that it’s the little things that add up.

I wonder if the disciples would have truly stood for what they did throughout the book of Acts if not for the personal touch of Jesus on their lives. Would mighty proclamations from the top of the mountain have been enough? Having attended countless conferences and rallies in my life, my hunch is that it would not have been.

However, lasting relationship happens through a cup of coffee, a well-timed smile or just the willingness to lend a listening ear. I am so grateful for new friends who compel me to slow down so that I can hear not just their words, but more importantly their heart. If God cares enough to number the hairs on my head, that is reason enough for me to care about the little things in the lives of those around me. This is not easy for me as I naturally focus on the big picture, the vision and the goals of life.

Part of the challenge for me is that the little things are rarely noticed and don’t typically seem to bear immediate fruit. I’m highly competitive and love to win. Big events, programs, and activities provide instant feedback and a sense of accomplishment. But after the lights fade and the chairs are put away, God desires all of us to be engaged in healthy and sustainable relationships. And these come about from doing the little things, over and over and over, and then suddenly realizing that God has created a beautiful friendship based on hearing, listening and being in the moment.

I know that some of you do this naturally and I am so grateful because you compel the people like me to slow down and smell the roses. Please don’t compromise the little things and don’t ever allow the big picture people like myself to get so wrapped up in our events and projects that we pass up opportunities to sit down and hear a story. And if you are like me, while we might not admit it, we need the little things just as much as everybody else does!

Dear God, thank You for caring enough about me to number the hairs on my head. Slow me down today. Help me realize that it is often the little things that carry great weight in Your economy. The faith of a mustard seed, the lunch of a young boy, the courage of Gideon. Remind me that life truly happens in the hearing, the listening and the being of life much more than the hustle and busyness of life. Amen.
~ Mike

Wednesday, May 24, 2017

Can I PLEASE use the bathroom in peace?

"Remain in me as I also remain in you."
John 15:4 (NIV)

One of my most difficult (or should it be triumphant looking back?) moments was when our eldest was small. I was giving the talk at a wedding of a couple in our church, and Andrew was conducting the service. We had a hand over plan in place for that moment when we needed to swap who was at the front of church, but at the last second things had to change, our second was clearly unwell and wouldn’t go to the person on standby, which meant our eldest couldn’t have Daddy’s full attention. Now, of course, she wouldn’t sit with anyone else at all so she came with me to the lectern – not a new thing, we’d done this many times. However the setup was a little different from Sundays, she got anxious, crawled in under my skirt and made her home there for the rest of the talk, very much enjoying exploring her new tent with its zip and buttons! The groom was in stitches, I battled on!  

I don’t know about you but I find the separation anxieties hard, sometimes I just want 30 seconds to catch my breath, a trip to the toilet without an audience, a shower where I don’t find a fully dressed little helper climbing in half way, school drop off that doesn’t leave us in tears and exhausted, bedtimes where sleep came calmly, and maybe in my reckless wild moments I even dream of evenings out that don’t begin and end in tired anxious tears. I tire quickly, my own resources of patience and compassion run dry as we go over the same reassurances again and again, and again; my own anxieties mount as I feel more and more inadequate in my parenting.

 And I am reminded that we have a Father who asks us to come like a child. Who invites us to come on in and make our home under his wing feathers, to call out at his door through the night when we need things, to pray incessantly, to hold tightly to his hand, to keep up and stay close.
Stay joined to me, and I will stay joined to you. John 15:4 (CEV)
And suddenly I see these invitations in a whole new light. He is asking the opposite of what I find myself asking my little ones; ‘give me some space.’

Live in me. Make your home in me just as I do in you. John 15:4 (MSG)

Our Father doesn’t want us to have him at arm’s length, not even for a minute; he does not want us to ‘gain independence’ from him; there is no need to grow out of needing him close. He understands us completely in all our own anxieties, struggles, fears, and worries yet he does not tire, he is overflowing with compassion and love and patience for us. I love the Matt Redman song that speaks of our need of God, and his never failing love for us: ‘Abide with me’.
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. Isaiah 40:28 (NIV)
Father, I cry out ‘abide with me’ yet you remind me you are already so close, whispering to me ‘abide with me’ – draw me closer today, show me how to come like a child who finds their security and well-being solely in you. 

Tuesday, May 23, 2017

Sick But Not Hospital-Sick

You keep track of all my sorrows. You have collected my tears in your bottle. You have recorded each one in your book. 
Psalm 34:8, NLT

Last week Liam had the worst cold that he has had this winter. Although we haven’t needed supplemental oxygen or hospitalization for his colds for the past 6 winters, illnesses for Liam stop our entire family life. When he is unwell, our every effort revolves around his care. Last week my husband and I took turns all night on the couch with Liam sleep-sitting on our laps so that he could breathe and sleep. Parents of typically developing kids complain about this with a toddler and doing it with a tall 9-year-old is even more difficult! (I can't help but wonder how we will do this when he is 16!)

Our girls know that any expectations that they have of us - driving places, appointments, dinner - go out the window if Liam is sick. Our family goes into a survival mode and only the most necessary things get done. These girls who can often be loud, demanding, and lack a helpful attitude begin whispering, taking care of each other, and doing chores without being asked. They know that it takes every ounce of our energy to tend to a sick Liam. 

I realized the extreme difference between an illness for Liam and one for the girls when I was on the phone with our nurse. We were talking about his oxygen saturations and heart rate and trying to parse out what symptoms are allergy related and which are cold related.  She asked if the rest of us have a cold and what our symptoms are. I was stumped.  I had no idea if the girls had colds or not. When I asked them, I found that they did have colds, but since they are generally healthy kids, they just blew their noses a bit and went on with life.  As their mom, I didn’t even know that my 12 and 5-year-old had the same cold as Liam!  Even when my girls have illnesses that knock them flat, it is typically a few days in bed with lots of TV and fluids. Mothering them through sickness is a completely different thing than the overwhelming feeling of even minor illness for Liam. The combinations of low muscle tone, poor swallow timing, protective airway behaviors, and being non-verbal make every illness so difficult.

Sometimes I find myself missing the days when Liam was hospitalized for every cold. I don’t miss the home oxygen or the deep suctioning or the fear that he wouldn’t make it through each cold. What I miss is that our friends and relatives recognized how hard it was for our family. Knowing that we were in the hospital, they recognized the emergent nature of the illness and all of the management that went into being at the hospital and keeping our home running. I guess a part of me liked that others recognized our stressful situation. After winter upon winter of Liam managing without hospitalizations, it feels like no realizes how quickly he can become very ill and how intensely difficult his care can become.

I'm not sure why I want others to recognize the consuming nature of Liam's daily care in my life. I care for every need of Liam's. I manage his care and school teams. I make sure he is fed, hydrated, clean, and appropriately engaged in activities. The harsh reality is that without me, he would die. He is almost 10 years old and cannot even hydrate himself. He depends on me for every single need. Each day he gets bigger and heavier and I must continue to care for him. It feels isolating to do something hard every day for many years and feel like no one even realizes how hard it is. Sometimes the desire to have others understand or empathize with the overwhelming feelings of parenting a medically complex, non-verbal child and the heartache of the isolation that I feel burns so fiercely within me. I want others to spend one day fiercely loving someone whose needs are so great. Just one day.

The reality is that the recognition and empathy of others aren't as important as I sometimes let myself think they are. God knows the hard work that we do each day. He sees our loving care for our children, our exhaustion, and our isolation. He knows the things that overwhelm us. He cried with Mary when her brother Lazarus was dead and he is with us when we are up to our eyeballs in caring for our loved ones. Psalm 34:8 says, “You keep track of all my sorrows. You have collected my tears in your bottle. You have recorded each one in your book.” So as I am feeling like there is no one who understands, there is. Our God whose own beloved son died for sinners understand. He cares. He knows my every sorrow. He cares so much that he has collected my every tear in his bottle. He has recorded my sorrows in his book. I am not alone in this hard job of parenting. You aren’t either. May we rest in the God who values us so much that he collects our tears in his bottle.

Pray:  Dear Heavenly Father, collector of my tears,
Thank you for loving me so much and for caring about my earthly sorrows and difficulties.  Please give me strength to face each day and confidence, knowing that you are a God who treasures me and holds me through every sorrow. Help me to feel your presence. Amen.

Wendy Heyn

Monday, May 22, 2017

When Church Makes You Sick - Literally

"And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful" (Colossians 3:15, ESV)

I struggle with complicated migraine. These headaches hit at weird times, can be unpredictable, and when just the wrong combination of light, sound, and smell hit me; it triggers a migraine. I have lived with these most of my life. I know how to work through the issues when I am in public, but it is awkward. It is an invisible complication which is probably much like sensory disorders, except they don't get a migraine, but it messes with your brain nevertheless.

How do you survive in this type of struggle? Especially if the location you find yourself in is making you sick?

For us, we just adjust. Sensory sensitivities can be unpredictable. Some people will not understand but we can educate them. However, the sufferer has to have a plan to cope. On each trip we make, I am processing a potential plan. I have two kids with sensory disorders so the plan is good for their sake as well.

This particular day at church I knew I was neurologically sensitive, then the band started to play and I knew I could not stay in the room. Thankfully, there is an open room with a television where you can sit and watch the service on location. This is where we find ourselves retreating when something in the bigger gathering is starting to trigger brain issues with any of us.

In this struggle, it can be embarrassing but we must trust God and His provision of a safe spot to avoid the stimulus that will bring along further complications. For me, if I remain in the situation that is triggering a migraine, it can put me out of commission for a long time.  The fact that I can move to prevent that I am thankful for. Even if no one else understands. My Savior does because of His intimate crafting of me. He made each of us fearfully and wonderfully (Psalm 139) and will provide the things we need at the proper time (Philippians 4:19).

When the church building is making me sick, I can run to my Savior who is Peace (John 14:27). His perfect peace is what can help calm my overactive brain down (Psalm 23). He can do this with our children as well. We must look to Him and run to Him and trust His perfect plan, though stimulus overload is not fun. I am certain I will never understand the reasons why we deal with this here and now except that it helps us to rely and depend on Jesus.

It also helps us focus on the fact that this home is not our permanent home. This body, is not my renewed body yet. It helps us keep eternity in mind. I hope when a place like church makes you sick, you will be encouraged to have a plan as well and run to Jesus.

Lord, help me to see eternity and trust your promises as I struggle. Help me to keep my eyes stuck on the bigger picture. Thank you for crafting the unique challenges in my life to make me more like you. Thank you for sensory friendly places and friends who understand. In Jesus Name. Amen. 

~ Angela Parsley

Sunday, May 21, 2017

Holy Remembering ~ #SacredSunday

God gave us the Sabbath to rest in order that we might remember what He has just brought us through, thereby empowering us to face the week ahead.

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Friday, May 19, 2017

Remember Me

Then he said to Jesus, “Remember me when you come into power!”
~ Luke 23:42, CEV ~

"But when all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison."

The chief cupbearer, however, did not remember Joseph; he forgot him.
~ Genesis 40:14, 23, NIV ~

The majority of our celebrations are centered around remembering. Memorial Day is about recalling those who gave their lives in service of their country. Birthdays celebrate the day of our birth. Thanksgiving we pause to remember all of our copious blessings.

Yet, being remembered seems to be something we desperately struggle with as parents raising exceptional kids. People develop "compassion fatigue" listening to our stories that don't produce the happy ending they desire. While others join Bunko leagues or run their kids to soccer practice, we're at the children's hospital with ours again. Life marches on for others as we are pushed to the margins. 

It cracks a parent's heart into a thousand isolated, painful pieces.

I don't know about you, but that's NOT how I want to be remembered – as a desperate, lonely, marginalized, unloved woman.

I am more like the criminal on the cross next to Jesus, "I stink, I know. But, Your Highness, I humbly ask that I would even momentarily cross your mind when You reign in glory." 

I want to be like Joseph, known by what God can do in and through me. Even if I am blown off and forgotten, knowing that in due time, the Lord will bless me abundantly. I may be frustrated, sitting in darkness, but my Rescuer shows up.

How do YOU want to be remembered?

I know how I want you to remember me...

  1. Above all else, I want to be remembered as a FIERCE lover of Jesus. Without this fulcrum of my life, nothing else matters. I am just another face in the crowd. I look just like the world. But in Him, ALL things are possible. Wrapped around Jesus, there is a joy that transcends any, ANY circumstance I may face.
  2. I want people to recall that I laughed no matter what life threw at me. Trusting in Jesus, I want my crazy, sassy humor to reflect blessed reassurance. I want to be like the Proverbs 31 woman, "She is clothed with strength and dignity; she can laugh at the days to come." (Proverbs 31:25, NIV)
  3. And speaking of strength, I want to be remembered, not as a strong person in and of herself, but as one who found ALL of her strength in the Lord. I am a wimp. I fall down every day. But I want people to see that I kept getting back up because I grasped God's mighty hand and was lifted beyond anything I faced.
  4. Really, after Jesus, my immediate family's opinion of me matters most. I want my kids to always remember me as their relentless advocate and their tireless trainer. I want to release them into the world loved, equipped, and pointed to Christ. "Train up a child in the way he should go, And when he is old he will not depart from it. " (Proverbs 22:6, NKJV) I want to be faithful to that mandate and be remembered in that way by my precious kiddos.
Even when we feel invisible, each of us leaves a mark on this temporal world. We have each been entrusted with the days we walk the Earth. How will we use them? Free will allows us to decide what we will do with those days. We may not get to decide what is thrown at us or those we love, but we can decide how we respond. That response will greatly influence the image we leave on people's memory. 

How do YOU want to be remembered?

PRAY: Jesus, I don't only want to be remembered by You but remembered as being for You. Guide me to live in such a way so that when people see me, they see You in me.

~ Barb Dittrich