Thursday, August 31, 2017

You Can't Swing a Dead Cat and get Medicaid Approval

Me and My Cat...Here's to 15 Wonderful Years.

I feel like I'm being overwhelmed by the wave of anxiety that washes over us once a year when my daughter is due to be re-evaluated for her medicaid.  

Every state has a different approval process, requests different amounts of information, and gives you certain "if you fail to comply then _____________________" statements.  

It's brutal, it's busywork, it's by-the-book OR ELSE.

I'm requesting records for the past two years from her:  general doctor, ophthalmologist, endocrinologist, speech pathologist, oncologist, nephrologist, and cardiologist. Only two of those providers run on the same computer system, so I can't just go to one provider...no, no...it takes phone calls, and forms to all of them.

I'm also suffering from vertigo right now. Constantly looking up and down at the keyboard, paperwork or phone to dial numbers is aggravating that.  

Did I mention I'm also renewing my teaching license? Yeah, I'm working with two government agencies right now. Good times.

And our cat is dying...I know, some of you may not like cats...that's okay. But this is breaking our hearts. It's adding to the cacophony in my head of all that is wrong with this broken world.

These are the "life and times" of the special needs parent. People can look at Facebook and Instagram and see our smiling faces and think everything is alright. But, underneath, the stuff we don't post is about paperwork, and deficit-based evaluations where we have to DWELL on our child's weaknesses or we get denied access because we are trying to stay positive.  

However, God calls us to persevere:

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. (James 1:12, NIV)

Since you have kept my command to endure patiently, I will also keep you from the hour of trial that is going to come on the whole world to test the inhabitants of the earth. (Revelation 3:10, NIV)

WE ARE BLESSED because we stand through our trials. WE WILL BE REWARDED in the end for our ability to carry on when things seem so bleak today.  

You are not alone, my friend...I'm right there with you in your struggles to be a parent, advocate, and steadfast soldier of the faith.

Pray:  Heavenly Father, we need your strength.  We need your hope.  We need your courage to carry on when things are overwhelming and we have trouble seeing the light at the end of the tunnel.  Precious Lord, you are our shepherd who can speak to us and calm us when we are frightened, weary or lost.  Speak to us now.  Calm our weary souls and give us peace to help us persevere.  Amen.

~Tammie Hefty

Wednesday, August 30, 2017

I Am Weary

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”  
Isaiah 55:8-9 NIV

Nothing moves quickly with medical equipment. Earlier this year, we ordered a wheelchair growth kit because my ten year old son, Liam, is getting tall. After eight months, many phone calls, and a long office visit, the growth kit was added to his chair. We expected to walk out with a chair that was a great fit for our tall boy. Instead, his chair looked like a hodgepodge and was unable to seat him properly. Now I will need to make a mountain of calls, go to more appointments, and advocate aggressively to try to get him into a new chair that fits him well. Liam will have to use a poorly fitting chair for all the months that this takes.  
Today I sat in a back-to-school meeting for Liam and realized that despite a caring team, I will be working very hard this year to get the help that he needs. In our home, I need to hire new personal care workers and until I do, I will need to do all of Liam’s feeding, bathing, and other cares. My list of to-dos and frustrations goes on and on and on. Does yours? Do you spend hours and hours fighting for services and benefits? Do you feel like you constantly transporting to and from appointments? Do you lift, feed, tip a cup, dress, and change? Do you have to check, double check, and reteach others to be sure that your child’s needs are being met in the best possible way? Are you weary and exhausted? I know that many of you fight battles like these every day. My Liam just turned 10. That is a decade of loving my precious boy, but also a decade of advocacy. How long have you been a mom?  How long have you been an advocate. Do you find yourself weary?

As I felt frustrated and overwhelmed at the unending tasks before me today, I thought about Moses. Moses did not feel well prepared to lead the Israelites. He had to keep going back to a stubborn Pharaoh demanding the release of God’s people. Later Moses had to wander the desert for 40 years. He had to remind the Israelites of God's faithfulness and encourage them. Can you imagine his feelings of weariness? Yet God gave Moses the support of his brother Aaron to speak for him. God sent manna and quail for the Israelites to eat. Each day this manna and quail were a miraculous reminder of God’s presence. 

Martin Luther wrote, “
I know not the way God leads me, but well do I know my Guide.”  When things feel overwhelming and we are weary, we can rest in knowing who our God is.  The same God who led the Israelites...The same God who took Moses to heaven...The same God who sent his son to die for me…THAT same God is the God who ordained Liam’s days, my days, your days. “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” We don't rest in God because we understand his plan. We don't rest in God because his plan feels easy. We don't rest in God because his plan meets our approval. We can rest in this God because he took care of our deepest need with the blood of his son on Calvary. This God who sent his own Son for us is worthy of our trust. We can do what Moses and the Israelites did. We can wake up each day, we can praise the God who saves, and we can do the work he gives us.  When we feel weary, he will send the Aarons, the manna, and the quail. He sent his Jesus.  Our Savior. He will strengthen us for this earthly travail with his precious word and someday he will deliver us to our heavenly home. 

Dear Heavenly Father, Thank you for revealing yourself to me in your word. When I feel weary and tired, please lead me to your word. Strengthen me with your truth. Provide earthly supports for me to encourage me. Be with me. In your name, Amen.

~Wendy Heyn

Tuesday, August 29, 2017

Mothers and Meekness

Photo image courtesy of Michelle Patrick©
"Blessed are the meek, for they shall inherit the earth." Matthew 5:5 NKJV


At this time of year I frequently find my heart in the fifth chapter of Matthew,  usually reading and focusing on the following verses:
"You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house."

Matthew 5:14,15 NKJV
There may be no verses that are more God-breathed for the soul of a parent sending their child out into the world, especially a parent whose child faces difficult circumstances. What a base of comfort and stability that we have to set our children on. A firm foundation that can not be shaken, an incredible place from which a light emanates, purposed to dispel even the darkest of nights. 

Every time I send my son to school, my heart beats those verses.

There is a bold and brave feeling to the notion and words, that I am "setting him out to shine his light," but so often there is nervousness and uncertainty in the actions, in the doing. You see, "setting him out there to shine" sounds lovely when you say it, the imagery to the untrained eye, ear and heart is beautiful. But those of us who have lived it know it is a story so often written in heartbreak, grief, struggle and strife.  

It is only with time and a growing of faith in what God says, that we begin to see the bigger picture and start to exchange beauty for the ashes...
"To appoint to them that mourn in Zion, to give to them beauty for ashes, the oil of joy for mourning the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the LORD, that he might be glorified."  Isaiah 61:3 NIV
As we settle into what we know, we can see what it means for them to truly shine.  We can also see every mountain and valley of our path trailing out behind us, for many of us it was a journey of struggle, desperation and we are worn from the trip. Many of us have fought for every step that we have taken, that our children have taken, its what we do and we are tired. Beautifully tired from the fight.

There is this verse, these words spoken by Jesus...

"Blessed are the meek, for they shall inherit the earth."

How are we supposed to be "meek" when we have to struggle and fight for our children? The meek may inherit the earth, but will they inherit a well written and implemented IEP? (For those of you who may not know that is and Individualized Education Plan, a legal and binding document that is intended to guarantee our children a Free and Appropriate Public Education, this is also known as FAPE and we fight for this constantly.)

I stopped on those words recently as I was reading through the fifth chapter of Matthew... The word "meek" caught me off guard and kind of stuck in my head, well maybe more so in my heart... There was nothing about being "meek " that sounded like it would possibly relate to being the parent of a child that struggles with school, a child that does not communicate and interact with the world around him in a typical fashion.

I don't have time for meekness, at least not worldly meekness, the type of meekness that implies you will be trampled on and can not speak up for yourself. In fact as parents of children in need of services and inclusion we strive to be exactly the opposite.

Then I wondered if maybe I didn't really understand what it means, maybe I didn't know what biblical meekness referred to.

Maybe I should know.

I should know that Jesus was the most incredible example of that type a meekness. He was a strong example of a gentle spirit strengthened by knowledge of His Father's love and purpose. Jesus saw the big picture, the need and he knew the plan. Because of this understanding he was able to conduct himself with a spirit of humility, of quiet strength drawn from that knowledge of a greater purpose.

It takes great discipline to stand up for our children with a spirit of gentleness and humility, especially when we know that we are right and we have been conditioned over the years for fighting.

The earth if filled with amazing examples of the image of God. Some of those examples are sitting across from us in meetings, some are providing therapy for our children, teaching them, or crossing paths with them in our community, and they are walking their path. A path that may be just as wearing and incredible as the one we have found ourselves on.

As frustrating as some circumstances may be, especially when we take those steps back to school, lets remember that "the meek will inherit the earth" and, by the grace of God, a well written and implemented IEP.

Oh Dear Heavenly Father, you are the director of our steps and the creator of our paths, a guiding light shining throughout existence. I pray that you fill us and our children with your presence so that we can step forth in humility, grounded firmly on a lampstand that will allow us and our children to fulfill your purpose. God we want to shine. So please hold fast in our hearts the knowledge that those frustrating circumstances and people that we encounter also have a purpose. We may not always see the big picture and understand your plan but Father we have faith that whatever it may be is created by you and God that is good. Hold tightly to our precious children as we set them out into the world. In Jesus name I pray. Amen

~Beth

Monday, August 28, 2017

A BETTER KIND OF GRADUATION

You made all the delicate, inner parts of my body
    and knit me together in my mother’s womb.

Thank you for making me so wonderfully complex!
    Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
    as I was woven together in the dark of the womb.
You saw me before I was born.
    Every day of my life was recorded in your book.
    Every moment was laid out
    before a single day had passed.   

Psalm 139: 13-16, NLT

Let’s be honest.

Once our loved one’s name is called out during a graduation ceremony and we cheer our hearts out, wouldn’t it be nice to sneak out and not sit through 700 more names being called? Especially when your last name is Abbs? Makes a lot of B-Z names to come after that!

I’m not someone who enjoys getting dressed up to attend the ceremony either. Fancy isn’t my fashion. I’m a jeans and t-shirt kind of gal.

But I was excited to be going to my son, Luke’s, 6th grade graduation. He was moving up to junior high! I also had the typical terror of wondering how he would do. Would his senses get overloaded and that lead to a meltdown? Would he stand still for a picture? Keep the cap on his head?

Besides these normal autism mama concerns this ceremony was so different and delightful. Only 12 children were in the ceremony for one thing. Each child had a video made with pictures of them at Giant Steps (his school—shout out to elementary E!) or on outings. You could tell on Luke’s face how proud he was. And he even walked down the aisle with his cap on his head! Then it came off but so what?

It truly was a celebration of each graduate and reminds me of some of the well-known verses in Psalm 139 that David wrote. He knit each of the 12 graduates together. He made them wonderfully complex and knows every day of their lives. Ours too.

The end of the ceremony was fantastically unscripted! While the elementary principal, Becky Kaufman, was giving closing remarks one of the graduates took the microphone and gave an ending spiel of his own and thanked us for coming. Even better, Becky, and the rest of us had a big smile on our faces while he did it. Being a school made up of those on the autism spectrum from kindergarten through age 21, (plus services for those who are older) staff there know how to be flexible.

And have I mentioned we didn’t need to dress up?

It’s easy to focus on all the difficult things that come with the special needs, chronic illness or mental health diagnosis. But the Lord says each of us is made in His image. So it was wonderful to be reminded there is also a fun, upside if we take the time to notice.

Prayer: Lord, thank you so much for the unexpected fun that comes with our children’s diagnosis and for the times they make us proud! Help us to notice the good stuff more often.

By Deb Abbs

Sunday, August 27, 2017

Hear Us, O Lord ~ #SacredSunday

Photo image courtesy of graphics4fun via pixabay.com
Whether you are feeling beaten because of hurricane winds, rising flood waters or other life storms, God's mercy is boundless. Call out to Him and trust in Him.

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Friday, August 25, 2017

When You Feel as If Death is Upon You

Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.
~ 2 Corinthians 1:9, NIV ~

Wow, this verse is powerful! Suffering is an opportunity to rely on God.

Any trial. Any heartache. Any trouble.

It gives us an opportunity to see we cannot rely on ourselves but instead must rely on God who raises the dead.

Paul does not indicate what trial or trials were causing this deep pain but the important part is to focus not on the trial but on the why of it, which caused them to rely on God.

Self-reliance is sin. God is not as concerned about relief of our trials as He is for us to rely on Him with our entire hearts through those trials.

Sin is a cancer to our soul that needs to be eradicated. It is often trouble or trial that exposes this cancer. When we see it we must confess our reliance on self and entrust our selves to God. This is what Paul is talking about here.

We will have trials that we cannot endure but we are not supposed to carry this alone; God is always there to offer comfort and be our Comfort. Then as we learn this comfort we can in turn comfort others in need. This is a way of receiving God's love and in turn pouring out His love onto others.

Paul was being questioned because of his weakness. People were starting to think he was not credible due to his sufferings and afflictions. Those accusers had it wrong. Paul was actually learning God's character in a way that only those who suffer do.

We must learn that "God's grace is sufficient for us because His power is made perfect in weakness," 2 Corinthians 12:9.

Paul also goes on further to say, "Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:9-10.

As parents of those who have special needs we may often feel the sentence of death on us. We may often feel weak. We may feel burdened or persecuted. Yet, in this weakness is when we are truly strong because it is His power that is at work. It is Him who rules our lives. It is His glory that shines brighter. So rejoice in your troubles because He is at work and His power is on you.

Prayer:

Father forgive us for relying on our own strength in life. Forgive us for seeing the strong as more valuable. Help us to change our perspective toward Your perspective. Help us delight in weaknesses, insults, hardships, persecutions and difficulties because that is when you are strongest in us. Forgive us for whining or complaining about trials. Help us to run to you as the One true Comforter. In Jesus Name. Amen.

~Angela

Thursday, August 24, 2017

Everyone needs a flock to call their own

“All the believers devoted themselves to the apostles’ teaching, and to fellowship, and to sharing in meals (including the Lord’s Supper ), and to prayer. A deep sense of awe came over them all, and the apostles performed many miraculous signs and wonders. And all the believers met together in one place and shared everything they had. They sold their property and possessions and shared the money with those in need. They worshiped together at the Temple each day, met in homes for the Lord’s Supper, and shared their meals with great joy and generosity — all the while praising God and enjoying the goodwill of all the people. And each day the Lord added to their fellowship those who were being saved.”
Acts of the Apostles 2:42-47 NLT

As soon as I received my box, I knew something wasn't right. This little box that I had just picked up from the post office should have been chirping and peeping as I brought 8 little chicks home to my little homestead. But something wasn't right; the box was way too quiet. When I opened the box, I was broken-hearted to find 6 of the chicks had passed en route, a seventh was not well at all, and only one chick remained standing on its two little chick feet. The last chick standing snuggled with its buddy until the sick little chick had breathed its last. And then the little chick began to cry. Chicks, much like people, were not meant to be alone.

We named her Beulah, and although we provided Beulah with everything a chick could ever want, she continued to cry. Beulah needed a chick family. My husband jumped in the van and drove to the nearest Tractor Supply so that he could bring Beulah a whole new chick family. As soon as we placed those new chicks in with Beulah, she stopped crying and snuggled right up to her new friends. Beulah was happy again.

Chicks, much like people, were not meant to be alone. We all need a flock, a tribe of our own, to belong. I think of that when I read the Acts passage about the early Christian church. They didn't just worship together, they did life together. They shared meals. They made sacrifices in order to meet each others needs. They spent time together. They studied and learned about God together. And they prayed together. Churches today look very different than that early church, but the essentials are always the same: studying the Bible in order to know Christ more fully, helping each other, sharing meals, worshiping together, spending time together, and praying together.

People, much like chickens, weren't meant to be alone. If we really believe in Jesus, we need a tribe, a flock, a church family to call our very own. And it's hard to get to church services when you have a child or children with special needs. Medical problems, behavioral problems, social anxieties, exhaustion, just to name a few, can make it nearly impossible to get there. But you need to be there. Not every church needs to look like a mega-church, or a large church, or a fancy or famous church. It might just be a few folks that gather in your living room on a Saturday morning or a few hundred folks coming together on a Sunday in the fire hall. You need a church family who will support you, encourage you, and help to meet your needs as well as be devoted to Bible reading, spending time together, sharing meals together, and to prayer. Because people, just like chickens, weren't meant to be alone. We all need a family that comes together in the name of Christ.

Dear God,
Thank you for creating amazing churches of all shapes and sizes. Please help me to plug in to a church that studies Your Word, prays, and eats together and spends time together and helps each other. Please remove the obstacles that get in the way of my church attendance. And if a church doesn't exist that meets my needs, please give me the wisdom and the knowledge to start a church that follows You. Amen

Amanda Furbeck

Wednesday, August 23, 2017

Peaceful and Peacemaking in IEP meetings and Life

photo credit: pixabay.com
We … continue to live through the Spirit’s power and wait confidently in the hope that things will be put right through faith. …
The Holy Spirit produces a different kind of fruit: unconditional love, joy, peace, patience, kindheartedness, goodness, faithfulness, gentleness, and self-control.
Galatians 5:5,22,23 (The Voice)

When God reigns, the order of the day is redeeming justice, true peace, and joy made possible by the Holy Spirit.
Romans 14:17b (The Voice)


After homeschooling my oldest (with ASD) for 8 years, I decided to send him out to school. This was 4 years ago. In that period, he's been to two schools, and I'm thinking about exploring a third option. Now, the biggest reason I homeschooled him was that it was easier than the persistent and painful conversations needed to cajole, negotiate, advocate with the powers that be, for his best interest as I see it. 


Learning a new school takes a lot of time, for both of us. Sometimes I feel the time is well spent, most times I feel the frustration of Sisyphus carrying water in a basket, up hill. Whether to engage a new school, or to remain in the current one, the barest thought has my chest tightening, and my shoulders bunching, as the anxious feelings flood my system before I have even formed a coherent rationale. It seems as if peace is hard to find.


God is wise, and clearly knew that, left on our own, we have no idea how to maintain internal peace, nor peace with each other. The current political climate and racial tensions in the US highlight this integral human struggle: the difficulty with difference, with the other, with not being able to control the outcomes, with being peaceful, peaceable and peacemakers. I'm tempted to wonder why they can't be peaceful and why they can't be peacemakers. The Gracious God quickly reminds me of my struggles to be peaceful internally and how perplexed I feel trying to be a peacemaker while negotiating and advocating for my son's needs.

Peace Inside?

Prioritizing internal peace has been a recurring theme of mine for the past couple of months, and that means building my awareness of my rapid cascade into panic at the drop of a hat. What are my triggers? What am I believing? How can I help myself? What is my gracious Father saying to me in this moment? What tools has He made available? What way of escape has He created that I can't yet see?

Peace Without?

When I'm not aware of my internal state, it's easy for me to navigate relationships and the world at large in a state of fight, flight, freeze! Who knows which option I'll choose if you cross my path! And even when I'm exercising supreme self control, almost completely hiding the fact that I'm close to the edge, my non-peaceful state can be felt by others, whether they are aware of it or not. Like other humans, my emotional state is contagious! And in my home, who knows who's initiating the emotional tsunami? Someone woke up on the wrong side of the bed, full of anxiety and fear, and it's downhill from there!

God Does it!

The kingdom of God operates on different rules than our earthly systems. And some days, I remember. I remember that the King of the Kingdom lives in me, and empowers me to live the kingdom way. What's that way? The way of righteousness, peace and joy, made possible by the Holy Spirit (Rom. 14:17). After all, peace is a produce (by-product) of the Holy Spirit (Gal. 5:22). The peaceful, peaceable and peacemaking life is a supernatural reality, available to me as I remain open to the control of the Spirit (Gal. 5:16; John 15:5).

Me First!

So it does start with me. Not to exert extreme control, to clamp down on my panic and not spread it, but to yield to the flow of peace from the Spirit, and to lean into the Peaceful One when I'm wracked with panic and fear of the future. The anxious feeling may not leave me, but true peace is more than a feeling, it's a knowing. And when I know Peace lives in me, I can speak peace and negotiate peacefully, regardless of the struggles, pressures and just miserable behavior from others that I encounter. The Ultimate Source of Peace will permeate my being and flow out to others, hopefully bringing and making peace, whether in my next school visit, IEP meeting or Medicaid interview. Perhaps the healing our families and country need will happen, one person at time, as we all make peace a priority.


Dear Heavenly Father, May Your Kingdom come in our families and in all that concerned them. May your peace permeate my being so much, that I will be peaceful, peaceable and your peacemaker, helping to bring healing to this world you have given us to care for. 
Amen.

Tuesday, August 22, 2017

the kindness of strangers ...

“The fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law.” 
Galatians 5:22-23 (NASB)

Girlie and I watch Speechless from time to time. Okay, well, it is just me. But, I love the characters. They are just adorable – witty humor in the face of obstacles. This weekend I was doing a little binge watching some of the last season episodes while the boys went to see a movie at the theater. Theaters are just not Girlie's thing, especially loud films, and being in her wheelchair the whole time is not her favorite.  

I found this episode about the family’s experience in a grocery store, all the people they encounter, and the interactions with both the strangers and their own family (all 3 children are teenagers – Lord help them). 

Kindness was the theme, what kindness looks like and does not look like both in the family and with strangers. Kindness was not extended to the mom by her middle son. Kindness was not extended to JJ (son in a wheelchair) by a stranger. Kindness was not extended to the father and daughter by the employees.

Each group responded differently. The mom’s response was to put on an elaborate hoax to “trick” her middle son in to kindness. The dad and daughter tried to take what the employee would not sell them. And JJ, let’s just say he took revenge on the guy for treating him like an object to be moved out of the way, by becoming an object in the guy's way through the entire store.

In the end, JJ’s aide for school/home (who happened to work as the store manager on the weekends for extra money and could see all the interactions on in store cameras), showed them some amount of truth in each of the situations and assisted in some kindness between them all. 

At the end the mom pleads with the middle son to “treat her like a stranger” because he shows strangers more kindness than his family.

Sometimes strangers are actually much kinder because they don’t know my personality, my flaws, my fears, my failures, my family background. The stranger who offers a smile on a hard day, the stranger who offers to let me go ahead in the grocery line, the stranger who compliments my child, the stranger who offers a gesture of grace, going out of the way to show kindness.

The truth is we all need to extend grace and give kindness, regardless of whether we are extended kindness or not. Kindness should be my FIRST response to unkindness.

  My first response should be to extend grace, not assume the worst.

The visible extend grace to the invisible.

The invisible extend grace to the visible.

The son extends grace to the mom.

The mom extends grace to the son.

The clergy extend grace to the lay people.

The lay people extend grace to the clergy.

The neighbor extends grace to the neighbor.

Those who hear extend grace to those who are deaf.

The deaf extend grace to those who hear.

The limited extend grace to those who think they are “unlimited.”

Those who think they are unlimited extend grace to the limited.

The stranger extends grace to the stranger.

Proverbs 3:3 says “Do not let kindness and truth leave you; Bind them around your neck, write them on the tablet of your heart.” 

We are called to kindness because we are chosen of God (Colossians 3:12).

We are to grow in kindness in order to become useful and fruitful in Christ (1 Peter 1:7-8).

The kindness of Christ leads to repentance (Romans 2:4).

Please pray with me:

Father, thank you for your kindness you have extended to me. Thank you for your good gifts you bestow on your children. Lord I ask you to teach me kindness as my first response, just as You have shown me. Please work through me in your kindness extended especially in the face of unkindness.

Amen.

Monday, August 21, 2017

Confession: I didn't do my summer to-do's

“…for his compassions never fail.  They are new every morning;”
Lamentations 3:22b-23a, NIV

The first day of summer break I was optimistic and inspired. I had a long to-do list for my son with special needs. We were going to find various new specialists, therapists, do an “intensive” or two, and end the summer with an enhanced boy and a momma whose list was all checked-off. I envisioned the first day of school a triumphant return for both of us.

I should have tempered my enthusiasm a bit. My son is 17, we’ve done summer before.  And despite my enthusiasm, this one turned out like many of our previous summers. Have you ever felt like you are not doing nearly enough? Surely all the other special needs moms are getting it ALL done, right?

I decided I would share my summer to-do fail with you, and then I’ll burn the whole list! Because lamenting what I have not done isn’t going to help me. And focusing on what we didn’t do, or have, or find, is not what will lead us into a successful Fall. My un-checked items include: Find an ABA therapist (which we got a prescription for in February and I just got my fourth rejection); Go to the beach a lot (haven’t been once since summer started); Get an appointment with ___________  (fill in the blank, he needs about 4 different specialist check-ups at this point).   

I can’t even type all of those without getting a knot in my stomach and having to shut down some pretty harsh self-talk. I find that I review the list often, and almost never do I visit all the great things we did this summer. I guess that’s the special parent dilemma: There is always something ELSE that we could be doing or finding to help our child. The more complex the special needs, the greater the myriad of new specialists, services or medicines that one could be researching. It’s never-ending and definitely overwhelming. 

Let’s start school by congratulating ourselves for starting school. Seriously! If your child is going to attend a school (or homeschool) great job! Just that has taken a lot more work for you than for parents of typical children. You survived IEP meetings and new teachers and questionnaires and re-shuffled therapy schedules, etc. And while we’re patting ourselves on the back, you survived summer! Hooray! Making it through a long string of days where schedules are off, sleep patterns are different, food is not routine, therapists are on vacation, and rain (or heat) change plan: that is not for the weak or frail. 

I’ve decided not to focus on my still-pending items, but rather on the positive aspects of summer and starting another year of school. Maybe I won’t burn the list, I’ll scoot it over to my Fall to-do items, and give myself a few more months to get them all done. Whether or not you got everything done this summer, feel free to enter the school year at peace, with positive thoughts about yourself, your parenting, and the new season. We all made it through summer, and thankfully we are entering a new school year. This time I am vowing to NOT place any new or unrealistic expectations on either my son or myself. That way my perfectionism will have nothing to criticize me about. Yes, we’ll keep plugging away at doing special needs life, but enjoying it along the way.   

An end-of-summer prayer:  Thank you Heavenly Father, that your compassion toward me is new each morning. Help me to see and feel that you are pleased with me, and not look back on anything I haven’t accomplished with regret. Let me instead look forward to your grace and mercy. Enable me to greet this new school year with strength and a positive outlook for myself and for my child(ren). Bless this school year, protect my child, and keep me in your will as their mom, following the steps that you have ordered for us.

Sunday, August 20, 2017

Take Time to Listen ~ #SacredSunday

The Sabbath was made for rest. We can't hear God's voice if we fail to slow down and listen to His Word as well as the prompting of the Holy Spirit. Be intentional about taking time to turn your ear towards your Maker this weekend. You might be surprised what you hear. 
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Friday, August 18, 2017

Loving God Enough to Let Go

Copyright: kuznetsovkonsta / 123RF Stock Photo
Offer the sacrifices of righteousness
        by trusting the Lord.
(Psalm 4:5, GW)

Last week I spent five days in a row with a group of remarkable "warrior moms" at a special needs day camp. On Friday mornings I have been training an inspiring group of mothers to be mentors. Other days I am speaking with parents one-on-one, in our small groups, or connecting with moms and dads by happenstance. The prevailing theme always seems to be the samefear and worry.

At the same time, I am preparing to send one of my children who is still in search of medical answers abroad for a full year of study in Japan. Her college advisers have marveled at how her father and I cheer her on in this endeavor. We are so proud of her! And while I hate the thought of not hugging my precious girl in my arms for an entire eleven months, I cannot wait for the woman she will become on this trip. 

At camp, we shared many, many stories of our children. My daughter's release was juxtaposed to other parents who are terrified to even leave their child alone with their spouses. The dread of the new school year also seemed to haunt many. Others still were wrestling with the thought of their child's transitions to adulthood in the not-so-distant future. 
Copyright : ymgerman
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 don't know how you can be so calm about letting her go!" one of the mothers commented to me at camp. 

I have had parents I serve say virtually the same thing to me as my daughter's departure draws nearer.

Strangely, if you had ever told me that I would be at this point of peace twenty years ago, I would have told you that you were crazy. Still, God has done a work in me that only He could do. In my younger years, I had an almost relentless desire to be a mother. That certainly made it extra-challenging going through repeated miscarriage and infertility treatment. I was also a high-strung control freak. But God broke me of that tendency as He taught me very early on in parenthood to hold my children with an open hand

Perhaps hemophilia was a gift to me in this way. The worst things always seemed to happen to my son when I was standing right next to him or when they were without explanation. Like the time he stood up in the double stroller and landed face first on the hospital floor, seemingly bleeding from nose and mouth, astonishing his hematologist who hadn't really dealt with a toddler having frank bleeding in recent years. Or the time he got into the car after school one day after school with an "Ouch!" to his upper thigh and then ended up hospitalized for a week with home health care for a month because of a life-threatening bleed in his hip compartment. 

"We like to have control, don't we?" I pondered with the camp moms. 

The funny thing is that if having a medically fragile child or one with special needs doesn't teach you that you are not in control, nothing will. 

God has proven Himself faithful before and He will be again. Jesus told us that God has numbered every hair on our heads. I haven't even done that with my own child's head. How much MORE must God love my child than I! 

In the worst of circumstances our Father has been provider, comforter, healer, and defender. When things seem hopeless, He is our hope. Despite hardships, He shows us an incomparable peace and joy.

The natural response to this matchless love is for me to love God enough to let go. As I release my children to Him, I worship Him with my trust. And each time I trust Him, He shows Himself more trustworthy. After all, 90% of the things we worry about never come to fruition! 

With the unsettling behavior of North Korea increasing, my eldest and I have had the "what if something happened" talk. She was taken aback when I expressed to her that, while I would be crushed if the worst case scenario took place, I have the blessed confidence that I will see her soon again in heaven. She would be the lucky duck who got to beat me there! That reassurance of knowing what will happen to my girl regardless of earthly circumstances is a blessing beyond all measure. 

So as I lovingly escort my daughter to board that plane to Japan; as I trust my son to venture out one more day, despite having missed an infusion; as I suddenly allow my youngest daughter to have a sleepover with her new-found friends, I know that my faithful Savior will go with each of them when I cannot be there. They will spread wings to become their best selves. And I grow deeper in love with the One who is truly worthy.  

Pray with me...

Father, we parents raising remarkable kids always seem to have to be on high alert. A disproportionate amount of worry and concern seems to haunt moms and dads like us. Holy Spirit, fill us with Your strength to push through those emotions to a point where we can trust You fully with our children. Help us to love you enough to let go.

~ Barb Dittrich