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.

Pray:
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

Thursday, May 18, 2017

We Interrupt Your Regularly Scheduled Life

Our Daughter in the Hospital following her Wilms Tumor Diagnosis in 2005
When he had finished speaking, he said to Simon, 
“Put out into deep water, 
and let down the nets for a catch.”
Simon answered, 
“Master, we’ve worked hard all night 
and haven’t caught anything. 
But because you say so, I will let down the nets.”
Luke 5: 4-6 NIV

This past weekend I had the pleasure of attending a conference in Redding, CA called GrowU.  One of the "top billed" speakers of the event was Chris Brown, who is one of my favorite storytellers because he has a tremendous gift for bringing scripture to life.  

On Saturday night he retold the story of Jesus choosing his first disciples.  And, when Mr. Brown re-tells this story, you suddenly realize how God chooses us today in the very same way as He chose people back in biblical times.  

When you read Luke 5, you read about some fishermen who are cleaning their nets and Jesus asks Simon to take him out in his boat so he can speak to a crowd who has gathered on the shore.  Now, fishermen fish at night, which means, if Simon was in and cleaning his nets, he had just been out fishing all night long.  

Working hard.  
He was exhausted. 
And Jesus comes along and says, "Hey, can you take me out in your boat?"

Ugh.

I'm a substitute teacher, and by the time I'm on my way home, I don't even want to stop for gas...I just want to get home.  

Stop for milk?  Nope...we'll go without.  
Stop to get the mail?  No...I'll walk out to the mailbox later and get it.  
Tammie, will you keep your classroom open and stay in there so we can have a meeting?  

Forget about it!!!  

But Simon, thankfully, "gets it."  He knows that it's JESUS asking, so he agrees to take him out in the boat.
But THEN, Jesus has the gall to go even further and say to Simon after he's finished speaking, "Take us out further in the water and drop the nets."
Simon gives him the same response I would...
"Ummm...I was fishing ALL NIGHT...and, I can tell you, ain't nuthin' goin' on out there."
Simon pauses...
"But if you say so..."
Mr. Brown then asked us, his audience, a question:  
When did God interrupt you?
My instant response was: 
When He made me the parent of a child with special needs...
That was quite the interruption to our life...no worry-free homecoming with our new baby girl (we knew she'd be blind, and possibly get cancer, and likely have intellectual delays); no routine toddler years (she actually DID have cancer, developmental delays and was legally blind); no regular "drop-offs" for play dates or sleepovers; no easy enrollments for summer camps and extra-curricular activities (not with OUR medical history and list of current medications)...EVERYTHING would be more difficult, would take longer, would require repeated attempts and baby-steps.

BUT, how we respond to these God-terruptions is very important.

What did Simon Peter do?  He responded...

"Because you say so..."

And after he catches literally more fish than he can pull into the boat, and he falls down at Jesus's feet, Jesus says:
“Don’t be afraid; from now on you will fish for people.” So they pulled their boats up on shore, left everything and followed him. Luke 5: 10-11 NIV
I think when I fell down at Jesus's feet and said, "Go away from me, Lord, I'm a weak girl with too many fears and failures..." He replied, "Don't be afraid; from now on I will be closer to you than ever before, you just need to lean on me. Just as I encourage you, YOU will encourage others." (This is the Gospel according to Tammie.)

So, I ask you the same question that Chris Brown asked me as a member of his audience...when did God interrupt you, and how did you respond?

Pray:  Heavenly Father, you have called us all to be bigger and better IN YOU than we could ever be APART from you. Help us to remember to turn to you EVERY day so we can be reassured by your presence, strength and promised victory over this world.  Amen.

Wednesday, May 17, 2017

Special Needs: Finding God in the Eye of the Storm

Image result for Gods eye is on us even in the storms
I will instruct you and teach you... 
I will direct you with My eye.
Psalm 32:8, ISV 

Storms are part of this life. Some “brew up” giving us advance warning. Some blow over. Some take us unaware. 


But the promise of God is that He is with us in and through the storms of our life. Jesus' disciples exclaimed, "Who is this? that even the winds and storms obey Him?
credit:   Jesus - the Way, the Truth, and the Life STORY BIBLE
Having a child or adult in your life who has "special needs" means learning to live through a lifetime of uncharted weather. I'm often overwhelmed or frightened I won't be able to manage the brunt force of some of these storms. 

When our daughter, Bethany, was born with Down Syndrome, Jeff and I discovered our parenting will extend throughout her lifetime of challenges.  As a mom, that seemed more daunting than facing a timeline of challenges as other children grew up. 

We have to be alert and anticipate dangers Bethany might face but not understand.
(*predators, social media, prejudice, haters)   We navigate therapies, IEP’s, extra doctor appointments, and future living and employment possibilities. I'll admit- we are stressing out a bit as we plan for her adult future without us: financially and choosing guardians. We encourage her to dream (her current dreams are to drive and get married) all the while preparing her that she might not achieve those dreams but that her life can still be good! 


Added to the storms we face as parents, our hearts also are assaulted by every storm she faces. If she feels rejected or lonely, left out, or passed over, we feel her pain. Her storm is also our storm. 


But the good news is this: 


Our storms are Jesus storms. 

The storms of life are His specialty. 

Psalm 32:8: God will direct me with His eyes upon me

I am not hidden from Him.  You are not hidden. He’s not distracted, bored or just checking in once in a while to see how we're doing! Somehow, He can be fully focused, engaged, and acting in each and every one of our lives- throughout our whole life. 

This is incredible!!! I’m so limited in my abilities to focus I can hardly fathom this truth. 

He knows where I am - 24/7. 

He knows what I need and will provide - always. 

He will anchor me through life and ensure I safely reach heaven's shore. #NoMoreStorms 

Unbelievably, the best place to be in a hurricane is smack dab in the middle in the eye. The eye is the calm spot that whirls winds around at a fierce velocity, it creates an impenetrable circle of calm. I find Him in the eye of the storm. 

The next time you get a storm alert in life, remember God sees the storm from His vantage point. Every storm is small to Him. He will guide you and be your anchor. The winds of His love will encircle you creating His eye in your storm. 

Pray: God - You have authority over all things. You see, You know, You care. Shelter and surround us with your love in times of chaos and stress. Thank you for guiding us safely through our storms. In Jesus Name.  Amen 

Listen to "In the Eye of the Storm"... 


Cindy Barclay