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When disappointment comes

March 4, 2013 By 2 Comments

I have spent the past five months raising funds for my son’s service dog. He was matched in November with a dog named Kingsley. We met Kingsley in December and counted down the weeks until he completed his training and could come to live with us.

Two weeks ago, Kingsley came home. Jonathan was supremely happy. His siblings were equally thrilled. But then the unexpected happened. My youngest, who is two, began to exhibit signs of profound allergies to Kingsley. After a few days of watching him worsen, I had to make the choice to return Kingsley.

It broke Jonathan’s heart. It broke mine to put him through this. I was angry at God, whom we all know could have overridden whatever genetic makeup is responsible for the allergies my son has in the first place. Or He could have gifted me with the knowledge of my son’s allergies before allowing me to bring a dog into our home. But He didn’t.

Thankfully, our story may have a happy ending after all. The organization who trained Kingsley has located a standard poodle to begin training for Jonathan. Poodles are hypoallergenic. But we are once again months away from having a service dog for Jonathan.

There is this part of me that feels my child with special needs should be exempt from the disappointments we all face in life. Doesn’t he deal with enough already? Isn’t it unfair that his brain has been altered due to prenatal exposure to alcohol? How is the goodness of God to triumph over bumps in the road that feel as large as Mt. Everest?

I do not have answers to the questions in my heart. But, as I am honest with God, my questions turn to prayer. Deeper dialogue between us flows. And He reminds me that it is my heart He is pursuing and that my son’s special needs are one instrument He uses to chip away the rough edges. Faith does not make up easy answers, but it makes moving forward possible.

Father, give us all grace to trust you with our disappointment.

~ Rebekah

Filed Under: Disappointment, Fetal Alcohol Syndrome, grace, Parenting, Trust, Uncategorized

Raw, Raging Reality

March 3, 2013 By 3 Comments

I have been asked several times of late how the Mom in Newtown, Connecticut found herself so isolated.  Did she deliberately disconnect?  Was she protecting her son? Did she not ask for help? Given that she is gone we will never know the answers to many of these questions.

But I have to acknowledge that sadly, I understand how she could become isolated.

I am a very social creature who seeks out and wants connection.  I reach out to friends, remember birthdays, send love notes, send notes of encouragement, etc.

I even ask for help when I feel we need it.

So how is it that despite asking there is little help that actually happens?

Honestly, I don’t get it.  It grieves me.  I don’t know what more I could do to make our family needs known.  What does it take to be heard? Truly heard?

Days turn into weeks. Weeks turn into months. Months turn into years.

People are busy.  They are engaged in their own lives and ministries.  They have their own priorities.  Good priorities.  Important priorities.  Priorities I would support also.

And in the words of an old friend who I will never forget, “We know that when push comes to shove, God will meet your needs.” This is true, of course.  But it is true of all of us.  God will meet our needs.  But He wants us to be in community.  He created us to be connected.

So this morning I awoke with an ache of loneliness.  Yes, even I, the one who founded this community for connection, feel lonely.  Why do you think I am so aware of the need for this ministry?

What am I called to do?  I am called to continue to share transparently, even when people don’t respond.  This is obedience to Christ.  It is tempting to stop sharing.  To crawl into a cave and pretend not to need others.  But that is not true.

And what do I do when I ask for help and it does not come?  How do I respond then?  I pour out my heart to God.  I weep.  I thank Him for His presence.  I remember Jesus experienced the most raw, raging, gaping loneliness man has ever experienced.  He went to the cross and became sin on my behalf.  And when He did, God turned His back on Him.

Unimaginable.  Unfathomable.  When all others fail I have the Father.  I can’t imagine Jesus’ suffering to not have Him either.

He is my sustaining grace when I am lonely.  When I long for someone to understand the daily journey.  When I long for someone to reach out to my son, I ask, I appeal, and it doesn’t happen.  My heart breaks.  My soul grieves.  How must I respond?  I must forgive even if they do not realize their need for forgiveness.  Because I need to forgive them.  If I don’t the enemy will use it to stir bitterness in my heart.  I refuse that outcome.  I reject it completely.

So today, if you are feeling lonely, disconnected, know I hear your heart.  I see you.  And more important, the Father sees you. He knows your life. He sees your loneliness. He can be trusted. Remember with me this sweet word from I Peter 4:19: “Therefore, those also who suffer according to the will of God shall entrust their souls to a faithful Creator in doing what is right.”

You are loved and prayed for today.

Shannon

Filed Under: community, Forgiveness, God's presence, grace, Uncategorized

Sorrow and Grace

December 29, 2012 By 1 Comment

This year brought the deepest sorrow my heart has experienced in this life. My marriage ended in divorce. Along with the feelings of failure and disgrace came the sorrow of what this means for my children. It does not seem fair that children with special needs must also know the pain of a broken home.

This Christmas season has caused me to ponder the Baby who came to dwell with us. How does this impart joy into all the broken places of my heart? His coming does not make everything instantly better or okay. Life hurts. It is struggle. Those of us parenting children with special needs know this very well.

Yet the One who calls the stars out by name and sustains each with His power chose to come to us. Right into our pitiful mess. Right into our suffering. He chose to suffer with us and for us. Each time our heart hurts for our child who struggles, we join in His suffering. Pain is the pathway to experiencing Christ in all His fullness. Though we may wish to know Him any other way than through our hurt, our suffering is often His chosen instrument to probe and chisel the deepest places in our heart.

My attempts to solo parent push me closer to the throne of grace. I am thankful for a Father who understands what hurting feels like. I am thankful He offers grace to rise up and meet the need of the moment. I pray you find His grace today in the moments when you need it the most.

“Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.” Hebrews 4:16

~ Rebekah

Filed Under: grace, Grief, Uncategorized Tagged With: ,

Saying Grace

November 22, 2012 By Leave a Comment

Today, I will bow my head over the largest meal of the year. A meal conceived from groceries that spilled from counters and tables onto the floor in their abundance. There will be turkey and mashed potatoes, cranberry sauce no one but my father eats, the wild rice casserole that is in the second generation of its iteration, and the din of barking dogs and kids asking if “they can be done yet.” It will be a big, fat, happy mess.

We have so much, our family. Even as we contemplate another series of complicated diagnoses for Noah’s brother, we are buried in abundance. We have great cause for Thanksgiving. We have been shown such grace.

“All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God. Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” (2 Corinthians 4:15-16) (NIV)

At some point, my mother will pass the blessing cup, and into it, we will each place a clove. The clove will represent our thanks for a particular blessing. One of us will give thanks for a job, one for health. Another will give thanks for the salvation of their children, for their spouse, for the safety and warmth that a home provides.

This year, I will give thanks for grace. After all, ‘tis grace that brought me safe thus far.

It is God’s grace that provided what can only be described as an “escape hatch” when certain financial death loomed on the horizon. His favor was apparent in Matt’s speedy recovery from a surgery warned to involve a difficult recovery. God’s leniency was apparent in the speeding ticket I might have received the other day when based on past…shall we say…motor vehicle “indiscretions,” I might have had my license suspended, instead. His favor: in the doctor’s appointment we got in less than a week, when we were originally told it would take months; in the money that shows up in the mail; in the promises of friends to help us pack and move an entire life during the dead of winter. There is more of this – so much more, that you’d never stay awake through the tryptophan to read it all.

“Only you,” they say of our family. We are the “skin-of-their-teeth”-ers.

Really, I think the Lord just prefers a bit of flourish with His grace. It’s often so apparent, all I can do is shake my head and laugh. When He knows I need the reassurance of His presence, I can practically feel His hand upon me. And I don’t deserve any of it. None of us do.

“For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast.” (Ephesians 2:8-9)

Which is why today, when I bow my head over a plate piled abundantly high, I will say – and give thanks for - grace.

~ Sarah

Filed Under: Blessing, Challenge, Faith, Family, God's presence, grace, Gratitude, Thanksgiving, Uncategorized

It Takes A Village

September 12, 2012 By Leave a Comment

Having a family member with hidden disabilities often means that we need to give up our “ideal” version of reality for an altered version of reality.  As a Christian, we need to remember that this different version of reality is not second best, but God’s perfect plan for our lives.  God has reminded me of this truth several times this week in unexpected ways.

For the past few months, my husband’s disability has left him unable to drive.  He also had knee surgery in June and has had to find rides twice weekly to physical therapy.  We’re relying on friends and neighbors much more than we ever could have imagined…particularly since I recently started a new job 40 minutes from home.   At the same time, the children have all started in new schools.  I think I’ve mentioned here before that our kids have attended the same small, private Christian school for the last five years and this year we’ve enrolled them in public school.   My new job has me once again struggling with the strange role-reversal that God has for me and my husband.  Another one of my struggles has been that we would lose the close-knit Christian community in our church school.

Last week, during my daughter’s second week of public school, I received a call from the school nurse saying that my third grader hurt her knee and needed to come home.  I haven’t accrued any leave time at my new job and I was forty minutes away from home.  My husband was home, but couldn’t drive to go get her.  I was tempted to despair.  Ten minutes later my husband called me with a lift in his voice.  “I’m home with Meg,” he said.  “Who gave you a ride?” I asked, confused.   “I went across the street and asked Al,” he replied.  Al has been our neighbor for years but we’ve never really known him.  I discovered that Ben has been building a relationship with him each morning as they wait for the school bus with our other neighbors and their children.  In fact, Al is now on the schedule to give Ben a ride to physical therapy this week.

Today I received a text from a new friend whose daughter is in school with my third grader.  This mom had graciously offered to give my daughter a ride home from an after-school program even though her own daughter wasn’t participating.  Today she texted me with the name and phone number of another mom in our community whose daughter is in the after-school program Meg joined.  “Carolyn will be happy to drive Meg home twice a week,” she texted me.  My eyes filled with thankful tears…I’ve never met Carolyn, and I barely know the mom who had coordinated these rides.

I know it takes a village to raise a child.  I have three children and a disabled husband.  Coordinating rides for my husband and children has left me feeling that it takes a small city to care for our family!  But as our circumstances continue to change, as I am drawn farther from home and our children are drawn farther from the safety of our church school, I see God enlarging our village.  I am overwhelmed with thanks and look forward to meeting new villagers over the coming months.  God is with us, and we are thankful for the ways He continues to surprise us with His care.

Warmly,

Nancy

Filed Under: God's presence, grace, Gratitude, Provision

On Acting

August 11, 2012 By 1 Comment

For the past three years, our church has produced a summer youth musical.  My children adore the two weeks of rehearsals.  Over 100 students participate in our original musicals.   It’s exciting to walk through the church and see rooms of students intently focusing on their individual parts.  We have students from Kindergarten through 8th grade participating in various ways:  orchestra, choir, cast, singers, dancers … and an army of high school volunteers who are assisting with everything from dancing to make-up to costumes.

Growing up, I always wanted to be an actress.  As a young child, I was filled with excitement each year watching our high school musical, dreaming of the day when I would be old enough to participate.  As a teen, I attended theater camp for many years and loved being in shows.

Now my greatest role is my life.  A few months ago, when I was really struggling, I wrote in my journal about how I always wanted to be an actress, and how strangely, that desire has been oddly fulfilled as I feel that I am acting every day:  “watch Nancy ACT like everything is OK when she is crying inside.  Watch Nancy ACT happy and joyful when she’s filled with grief.”  But I also realized … the more I act like I am OK, the better I feel.  It’s amazing what control we really can have over our behavior.  There are so many days when I just want to cry and stay in bed.  But I don’t have that luxury … and I know that by simply doing the next thing, with a smile on my face, the help of the Holy Spirit, and a kind word to my neighbor, I am not only acting, but I am becoming the person whom I am seeking to portray.

I hope I win an Academy Award in heaven.

~ Nancy

Filed Under: Emotions, grace

On Handling Unpleasant Emotions

July 11, 2012 By Leave a Comment

Ben and I are walking down a road right now that neither one of us could have ever imagined.  Ben is being asked to lay down so many things that comprise the very essence of who he is.  I am being called on to take on more and more responsibilities.  God, in his providence, has arranged our circumstances so that we both feel stretched beyond our limits (and have for many years).

We pray.  We ask God to change our circumstances.  But our tendency can also be to grumble.  To complain.  To charge God with not being good to us.

Ben and I were talking today, and we realized that behind all of our complaining, underneath all of our anger and frustration and grumbling, what we are really experiencing is grief.

The Bible has a lot to say about grumbling and about complaining, and none of it is good.  But the Bible also has a lot to say about grieving.   The losses Ben and I are experiencing are very real.  We are grieving the loss of Ben’s health.  We are mourning the loss of his freedom and ability to do many of the things he loves.  We are saddened by the fact that I need to take on even more work to help our family financially.  And we are grieving over the impact of all of these things on our children.

In 1 Thessalonians 4:13, the apostle Paul reminds his readers not to “grieve as others do who have no hope.”  My prayer is that Ben and I would not grumble or complain, but that we would grieve as those who have hope.  I pray that our grief would remind us that God promises us that there will be a day when God will wipe away every tear from our eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.  Lord, help us to live in light of that day.

~ Nancy

Filed Under: Challenge, grace, Grief Tagged With: ,

The Hurt and the Healer

June 2, 2012 By Leave a Comment

I slept in this morning.  For me, sleeping in means anything but getting up at 5 or 5:30 a.m.  Sleeping in means NOT setting my alarm and just waking up naturally.  I love mornings like this.

This morning I woke up and heard music first thing.  My sons like sleeping in the basement on Friday nights and one had left his clock radio on the weekly wakeup setting.

When I entered his room to turn off his clock radio, I heard this.

Wow.  Love this song.  The lyrics are so good and a fresh reminder that life is a gift, even the hard days.  And what do we do then?  RUN, don’t walk, to Jesus.  The healer of our souls.  He is so good.

____

The Hurt and the Healer, MercyMe

Why?

The question that is never far away
The healing doesn’t come from the explained
Jesus please don’t let this go in vain
You’re all I have
All that remains

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into Your arms open wide
When the hurt and the healer collide

Breathe
Sometimes I feel it’s all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When the hurt and the healer collide

It’s the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes its rightful place
And all these questions fade away
When out of the weakness we must bow
And hear You say “It’s over now”

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When The hurt and the healer collide

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide [x2]

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here

Filed Under: Encouragement, God's presence, grace, healing, Music Tagged With: ,

Dealing with Difficult People…

April 25, 2012 By Leave a Comment

Louise and I are at Orange. It is so great to be here surrounded by so many ministry leaders from around the nation. We arrived, set up our booth and headed off for the first seminar, “Dealing with Difficult Families.”

Steve Adams of Saddleback Community Church shared a practical and challenging word about dealing with difficult people that can help all of us. Bottom line: Listen, learn and love.

When dealing with difficult people I need to listen to them. They need to know they have my undivided attention. I need to look at them. Uncross my arms. Put away my handheld device. Forget others walking by. Really listen to them. We have all been here. There are times when we need to deal with difficult people — got any challenging family members to deal with? I have to LISTEN. This requires getting outside of myself and focusing on them. I have to remember “it is not about me.”

When I listen I will LEARN. What is on their heart? What is driving their concern? Is there something I can do to help? How can I serve this person in front of me?

And why would I serve them? Why would I care? Because the love of Christ compels me to LOVE them. He LOVES them. If I am the body of Christ, His love compels me to love them also. This is the driving response that comes from His heart and His Spirit. I do not possess the capacity to love the difficult person apart from His grace. But the good news is: He has given His grace. He is sufficient to the need.

I was also struck during this breakout by another thought. As families living with hidden disabilities we often deal with very difficult issues. But that doesn’t mean we have to be “difficult people.” Our goal should always be to share our difficult challenges in a kind, loving and truth-filled way. After all, we are addressing our concerns to another person who is loved of the Father. He would have us speak the truth in LOVE.

Because He lives,

Shannon

Filed Under: Challenge, grace Tagged With: , ,

Resurrections…

April 20, 2012 By Leave a Comment

I know Easter is past, but indulge me – I’m still enjoying thinking about resurrections :) ….

For instance, Easter weekend 3 years ago, I remember driving to the beach for refreshment with a few friends. I love the beach!  Blue-green waves, diving birds, leaping porpoises, moonlight. Shells. I have many happy memories of my family on the beach…

My parents had just died, six months earlier, but I had done most of my grieving by the time they went to Glory. So I was really surprised when I saw the familiar sea, with its memories of days past, to be suddenly pushed under by a wave of grief. You know when you stand in the waves, with your back to the ocean, how a wave can sneak up on you, and plunge you under, leaving you choking for air? Exactly like that.

In fresh grief, I pored over e-v-e-r-y word of the Easter Story that weekend in Matthew, Mark, Luke, and John…and eventually, dwelling on that event resurrected my joy. My parents were alive and well in glory, because Jesus has conquered death, forever!  “God will redeem my soul from the power of the grave, for He shall receive me. Selah.” Ps 49:15

Then last week I witnessed a completely different example of resurrection…

I am nursing one of the young adults in our extended family who is fighting cancer, for the 2nd time. Everything had smoothed out after the first treatment, when suddenly (and I mean in the incredibly short span of an hour) infection overtook his diseased body, and by the time we raced to the ER,  most of his body systems were failing fast. It was 36 hrs before life really took hold again. A LONG 36 hours. But 4 days later, after a speed pass through ICU, he had a spring back in his step as I followed his tennis shoes down the hall (pushing his IV pole, of course).  “Resurrection” was the single word that came to my mind!

Last but not least, by any means, a resurrection has happened in my marriage these last 2 months. We always live with bipolar disorder in our marriage, so in that sense, there is always chronic disease which, if not monitored, saps the health of our marriage – either slowly or dramatically. This was the slowly-turned-dramatic scenario. We ended up in the ICU of marriages, with a whole team giving personal and marital CPR. I could hear taps being played, somewhere in the distance.

But God intervened. Actually, I could just say, “But God.” Period. When I allow God into the middle of my crisis – any crisis, He changes the equation (for the good). This time, He gave me needed clarity and courage while medications stabilized, and granted my husband the breakthrough he needed to conquer the infection of suspicion that comes so easily to him. Our marriage was resurrected! (no more taps)

Now we’re in the dig-out-phase where it’s imperative we “make straight paths for your feet, so that the limb which is lame may not be put out of joint, but rather be healed.” Hebrew 12:13  This phase is slow, because there is woundedness and mistrust that can only be overcome by “straight” paths – consistency, patience, counsel, accountability. We’ve tried the “just put it behind you – move on,” but that’s like trying to run on a freshly broken leg. We will run again, but not today. Today we limp. BUT a limp is a long way from being in the grave!

And for this resurrection, we are humbly, eternally grateful.

Thankyou for your prayers…

Lovingly,

Joan

Filed Under: Bipolar Disorder, Encouragement, God's presence, grace, Grief, JOY, Marriage Tagged With: ,
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