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His Deeds

November 26, 2012 By 2 Comments

Oh (Joan) give thanks to the Lord,

call upon His name;

make known His deeds among the peoples (of Chosen Families)….

I Chronicles 16:8

Tonight as I sit by the absolute last embers in the fireplace, watching my college girl scooch as close as possible to those fading embers to stay warm (in true “cinder”rella fashion), I’m reflecting (in a dazed sort of way) on all the things that happened this year – so many things I did not know were coming….

if it were not for God’s deeds on behalf of our family, we would be toast.

For instance, this time last year I did NOT know my husband (in a matter of weeks) would be in a full blown worst-in-twenty-years manic episode.  There are some things I just do NOT need to know ahead of time. God decided that would be one of them.

BUT, I also did not know God would use that episode to help us change doctors and medications — something we had been needing for YEARS. God accomplished those Medical and Marital Deeds through the manic episode.

I did not know, simultaneously, I would have to move an aging relative into assisted living. I’m too sentimental to be good at those kind of decisions…much less during a long manic episode.  But unknown to me, God would do many Moving and Logistical Deeds on my behalf, helping me dismantle and condense 84 years of life and belongings into a single room, in a city 16 hours from where I lived.

Don’t get me wrong – I still felt like God had double booked trials last winter (unnecessarily). But, as can be expected from Omniscience, He knew what was coming the REST of the year, and why that task had to be done THEN. (I thanked Him later). Not only that, but the “double booking” forced my blistered soul to live with elderly saints for 2 weeks, giving me fresh courage to endure the long manic siege.

On a different note, I did not know if my son, with learning disabilities, and ADD (and aversion to all medications) would graduate college last May. It would not have been the end of the world it he had not. But he DID! If you are reading this, you know God did 16 YEARS worth of Educational Deeds to make that happen.

Nor did I have the slightest clue this son would choose a bride this year. You would think, with the bipolar and then some disabilities around here, he would just go take a long walk off a short pier. But no. Because God is merciful, He answered our son’s prayers, and ours, leading him to a Jesus-loving life mate. Even though she lived half way around the world, one of God’s deeds was to make their paths cross!

I wish we had been the only ones with a manic episode this year, but we were not. One  dear in-law suffered as well, disrupting their young family for months, as the long search for the right med blend depleted their resources.  They were just getting some relief when they came for Thanksgiving….

SO…the sweetest moment of Thanksgiving for me was after dinner, when we were taking turns, naming God’s deeds on behalf of our family. It has been a HARD year because of hidden disabilities. But lo and behold, here we were, alive and well (all things considered)…I wept as I listed His deeds….

Thank you, dear Chosen Families readers, for letting me “make known His deeds” to you each week…for understanding what I mean, even when I am not skilled enough to explain….

Dearly Dependent on His Deeds,

Joan

 

 

Filed Under: Bipolar Disorder, God's presence, Gratitude, Thanksgiving, Uncategorized Tagged With: , , , ,

Rockwell and Reality

November 23, 2012 By 1 Comment

I don’t know about you but I often get caught up in the “wish it was” moments of the Holidays.  I so long for that Norman Rockwell picture of the holidays.   All of the family together as one big happy family.  Sharing gifts.  Sharing a beautiful meal.  Sharing laughter and memories.

Our home isn’t that Norman Rockwell picture.  We are broken by hidden disability and it affects that picture.  It is sad in some ways.  And it isn’t just sad for our little family.  It affects the extended family also.  It isn’t their “Norman Rockwell Thanksgiving/Christmas” either.

It is important to acknowledge this.  It is that elephant in the room that needs to be acknowledged.  It is important to acknowledge because without acknowledging it there will be hurt feelings, unrealized expectations, crushed dreams.  But by acknowledging it we open ourselves to new perspective.

Just because it isn’t Norman Rockwell doesn’t mean it can’t be beautiful.  It just has to beautiful in the way that works for YOUR family.

I was pondering this early this morning and praying for God to show me His heart about it.

And I was reminded of the reality that this is why Jesus came.   He came to redeem all of these broken places.  The broken places in our health.  The broken places in our hearts.  The broken places in our families.

Jesus came to redeem our brokenness.  He came to give us abundant life today.  But abundant life doesn’t mean it will look like Norman Rockwell.  Norman doesn’t live at my house.

He came into this darkness to bring His light.  And He reminded me of this lovely song I have been singing all morning.  Listen.

Isn’t He, by John Wimber

Isn’t he beautiful?
Beautiful, isn’t he?
Prince of peace,
son of God.

Isn’t he?
Isn’t he wonderful?
Wonderful, isn’t he?
Counselor,
almighty God.
Isn’t he?

Yes, you are beautiful!
Beautiful, yes, you are!
Prince of Peace,
son of God.
Yes, you are!

Yes, you are wonderful!
Wonderful, yes, you are!
Counselor,
almighty God.
Yes, you are!

____

I pray as you enter this holiday season you will embrace the beauty of God’s presence and see the beauty in your life.

Warmly,

Shannon

Filed Under: Christmas, God's presence, Gratitude, Holidays, Hope, Thanksgiving, 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

Upside Down

November 17, 2012 By Leave a Comment

My focus has had me contemplating my navel here lately. “What if?” “What, then?” “How will we…” I’m focused on the “cup” of difficulty the Lord’s handed in my direction. It brims with challenges. And I want to pass it back to him, with a “No, thanks.”

“Father, if you are willing, take this cup from me; yet not my will, but yours be done.” (Luke 22:42)

“And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame” (Romans 5:2-4).

It’s November, the perfect time to exercise gratitude and remind myself of God’s constant, unchanging presence. Of the little ways He shows me love during the day. Of the blessings big and small. I need to turn my cup upside down, empty it of its difficulties, and refill it with what is good, and what I’ve maybe been missing.

There are the three little elves that call me “Mama,” with personalities as big as their mouths: Jesse, my lover-fighter, he of the morning snuggles and the “Hold me, MAMA’s!”; Grace, my artistic athlete with arms open for my hugs, and a new picture colored for me every day; and Noah, my enigmatic leader, whose charisma and wacky giftedness enters the room before he does, and who’s brain I will not ever fully understand.

There is my husband of under-covers footsie, and shoulders wet from crying on, and the one big enough to take my ranting and my instabilities. The one who loves me as close to God as anyone.

There are our scrabbling dogs, and closets with clean laundry (though it does not get there without much wailing and gnashing of teeth). The pantry abounds with food, and the fridge that stores the surplus is humming with an electrical current that means we have enough to keep it on. The cars run, and though it recently took two new batteries to keep them that way, they both inch toward 150,000 miles with no car payments to be made.

There is my wallet, full with the Aetna insurance card that reminds me of the health care I can get whenever it’s needed; the coupons I’ll use when grocery shopping, the gift card I received from a friend, the number for a babysitter that will buy Matt and me a little sanity, and the note that Noah wrote and hid there for me to find later: “Mom, I love you. I hope you have a grat [sic] day.” There is not a dollar anywhere in its folds. But my wallet is full to bursting with things of value.

And there is the big bay thoroughbred standing in a field some miles from here with a new blanket on his freshly-clipped hide who may act like a pill while I tack him up, but after our ride, will put his nose on my shoulder and smell me quietly in a gesture of something like love.

It turns out my cup was full of something else.   And it overflows.

- Sarah

Filed Under: Blessing, Change, Encouragement, Family, God's presence, Gratitude, Holidays, Thanksgiving, Uncategorized

Venti (Twenty)

November 8, 2012 By Leave a Comment

I’m sitting in Starbucks as I write this, and feel compelled to share it only because it differs in large margin from where I normally write. Where I normally write is in the corner of my bedroom, on a desk barely large enough to contain my few writing implements and resource books. I write mostly in my pajamas.

Right now, I feel like a duck in a hen house.

This place is crawling with Audi-driving hipsters. They are the wives and well-dressed babies of local dermatologists. They are the partners of large law firms recently off their fox hunts. They are software neophytes (venti-something’s) who’ve biked here from their cavernous, video-gaming offices up the street.

They chitter with each other, coo over their babies, read the Times. They order their lattes to a certain temperature. One hundred and forty for this one, 135 for the other. I cannot tell the difference. Mostly, I’m just content to burn my tongue a little and then wait until it cools off. They order with certain panache, coming to the counter with a confidence that eliminates the need to even scan the menu board. They order their “regulars.” They are identified by name by the baristas.

What I am doing? I am scanning the American Bar Association homepage, and trying to figure out if it’s worth spending $150 to order a CD rom that provides a comprehensive overview of special education law so that I can continue to track Noah’s highly specialized educational entitlements. The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) requires that school districts provide disabled individuals with a “free and appropriate education” (FAPE). My husband and I have recently spent quite a few hours (venti, or more) meeting and corresponding with our local elementary school in a novel attempt to develop a service plan for Noah who – though he does not attend school there, but attends instead a private Christian school over the line in Pennsylvania – is still entitled to a “FAPE.” This means we have to act as though he is attending the local Maryland school, turn over our health care records and assessments for Noah, request they develop a service plan for him based on the documentation, decline the service plan because we plan to utilize it at another school, and then take the formal findings and plan to the Christian school where Noah attends in order that they might have access to government funding that will help them provide specialized materials and services for Noah.

Did you get all that?

THIS is what I’m doing in Starbucks this morning, sitting next to my venti coffee.

And then a lovely, freckle faced mother sits down next to me. She wears no makeup. Her belly is still swollen from recent birth. She sees either the safety of an understanding face in mine, or just an empty seat, but she places a portable baby carrier on the counter we share. Inside, is a mewing, spider-fingered two week old named Jack. I ask her about him. I tell her he is beautiful and that she should cherish every moment of his small-ness. I reminisce to her about my own Noah and how, while he was never truly small (nine pounds at his arrival, no less), he is bigger now than I ever could have imagined.

I am sometimes mired in the steps of our journey, and seeing this woman, misty eyed with infatuation for her newborn, brings me back to where we began, before I needed to research things like educational entitlements. Jack has a baby smell, and I am taken back to afternoons nursing Noah in our white glider, looking out over the backyard, listening to a disc of lullabies. I remember what it felt like to tear up for pure joy, carrying a heart I thought would break under the strain of perfect happiness.

I smile, and tickle Jack’s foot, and wish his mother all the best. Then I turn back to my computer, sipping my venti coffee, and logging another hour of research on Noah’s behalf because soon, he will be venti, too.

- Sarah

Filed Under: Asperger, Challenge, Contentment, Family, Gratitude, Journey, learning disabilities, school, Uncategorized

Showers of Blessing

October 28, 2012 By 2 Comments

Last month, we spent a week in a beach house with Michael’s mom, his siblings, and their families. Our anticipation about the trip escalated through August and September; we were both excited to go and nervous about going. Neither Cami nor I make transitions quickly nor gracefully. Add having other people watching us struggle to make transitions, and it can get stormy.

My sis-in-law found a house that had a third-floor suite, all one big room, but with doors to close—a place to pull away, calm our emotions, and regroup. Boy, did we need that space. The first night we were there, God put on a show with thunder and lightning and rain. While the family was gathered on the main floor, I found Cami sitting at the opened sliding glass door in our room, singing praises to Jesus as she watched the storm, as close as she could get to the powerful display without being in it.

I spent my week being an advocate for Cami, making sure she wasn’t left out or put on the spot, making sure she had space to do her Cami thing. It was exhausting. At home, in our normal environment with our usual routine, she hasn’t had an emotional meltdown in months. The week at the beach, she had three major meltdowns. I knew there would be rough spots, places to navigate skillfully being around different people with different personalities than the people we see in our lives at home. I didn’t expect things to be as intense emotionally as they were.

God knew, though. That night He showed off with the powerful storm? The next morning, I was catching a minute alone with Him, asking Him to give us strength to stay present in each moment, to celebrate Who He is and who we are because of Him, when I looked up and saw this promise:

He stayed so close to us that week. When I asked Cami what the most pleasant experience was from that week, she said, “I can tell you the most unpleasant experience, but not the most pleasant because there are too many to choose from.”

Her most unpleasant experience during that week? She fell on some rocks and scraped both legs. (More on that incident in another post.)

Her pleasant experiences?

  • seeing the Milky Way in the night sky (Let me just say: A.maz.ing.)
  • seeing multiple shooting stars on multiple nights
  • building unusual sand castles with her cousin

  • watching dolphins playing in the surf right off shore
  • looking down off a pier that’s only accessible by boat and seeing a momma horseshoe crab with her baby on her back moving through the sea grass
  • visiting a sea turtle nest, looking for signs of hatching
  • watching incredible lightning displays
  • chasing crabs and catching them

  • meeting a puppy named Monty in one of the shops in town
  • all the shells

  • eating some incredible chocolate chocolate chip cookies her dad made from scratch
  • making a birthday cake for her cousin from scratch with her dad

Were there rough moments? Oh, yeah.

But the brilliant, glorious moments? There were so many more of those.

Thanking Jesus for His showers of blessing,

Cassandra

Filed Under: Gratitude, vacation Tagged With: , , ,

Journeying Together

October 15, 2012 By Leave a Comment

Walking the daily journey with hidden disabilities can be wearying.  We all know this.  Somehow it feels better to say it out loud.

Walking the journey with your spouse is meant to ease that burden.

I don’t know about you, but rather than lightening the load, sometimes I find it adds stress.

Like any relationship, our marriage is attended by two broken people.  We each have our way of dealing with stress and responding to the challenges in our lives (related to disability or not).

We are intended to be growing in intimacy and oneness but at times are strained with distance from the wearying journey. How do we deal with this to lighten the load, brighten the darkness, encourage the weary?

Perspective: We both love and serve the same Father.  He called us to this journey together and He will equip us to walk in it.  I am so grateful for a husband who has stayed when so many others have taken the easy road of walking away.  I am reminded of the passage in Ecclesiastes 4: 9-12:  9 Two are better than one because they have a good return for their labor. 10 For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up. 11 Furthermore, if two lie down together they keep warm, but how can one be warm alone? 12 And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart.

Perspective: Let’s be honest.  At times we are weary from the dailyness of our lives.  The tasks can seem endless, the strain difficult.  Sometimes it can feel like the waves are crashing and you are going down.  Gratitude is a gift that changes your perspective even when your circumstances remain the same.  I am grateful for a husband who works long hours to support our family and then more hours to do homework with our son with gross learning disabilities.  Rather than focusing on how I wish we had more time together, I can choose to be grateful for his faithfulness in the dailyness of our lives.  And I can speak with kindness and gratitude for that faithfulness.

Will gratitude change the stresses of our lives?  Probably not.  But it will change my perspective.

Journeying with him and you,

Shannon

P.S. Bill can also make me smile:

Filed Under: Gratitude, Journey, Marriage, Parenting

A Father’s Touch

October 6, 2012 By Leave a Comment

I will praise God’s name in song and glorify him with thanksgiving. Psalm 69:30

I don’t know about you, but I am still growing to continually trust my children to our Heavenly Father’s care.  While I think this may be true for every Christ following parent to some degree, I think it may be even harder for those of us parenting a child with a hidden disability (SPD).

It can be so easy to worry about them when they are not in our care. Will teachers notice the subtle hints my daughter gives when she is struggling internally or will she ask for help if she needs it?  The list is virtually endless.

The fact is, although I cannot be with her all of the time, God is.  The more amazing fact is that He loves her even more than I do! It doesn’t seem possible, but it is!

I was reminded of His deep love and care for her a couple of weeks ago while she was upset and did not want to go to school.  Adjusting to full day Kindergarten is a challenge for any child, but especially for someone with a hidden disability.  I did my best to console her and suggested that perhaps God has something special for her at school that day and she wouldn’t want to miss out would she? We prayed together and she was off.

I thought about her all day wondering if she was having a good day despite the rough start.  I was eager to pick her up to see how she was doing. At dismissal I was greeted by a girl with a huge smile as she proudly shared about her opportunity to be the teacher’s helper.

“I bet you are glad you went to school today, since God DID have something special for you,” I reminded.

We both learned a valuable lesson. I thanked God for His loving touch in both of our lives.

In awe of His loving ways,

~Lynn

 

 

Filed Under: Encouragement, God's presence, Gratitude, Parenting, Sensory Processing Disorder, Trust Tagged With: , , ,

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

Of hypervigilance and time zones

August 4, 2012 By Leave a Comment

I am in Birmingham, Alabama and up before the dawn.  No really, it is still pitch black outside and I should be sound asleep.

I arrived to the hotel late last night after our flight was cancelled for mechanical difficulties.  We had been delayed 4 times over the evening, which should have been our 1st, 2nd, 3rd, and 4th clues.  But no, they waited until the flight landed 2 hours late to inform us it was being cancelled.  The good news?  They were giving us a hotel voucher and rebooking for in the morning.  The other good news?  We would get our bags!

Ok, not happy that I would not see the Royce boys but very happy I would at least get my bag and a little sleep, I headed with 30 sleepygrumpytiredirritableunhappygrateful campers to the line to get rebooked, hotel vouchers, and shuttles.  Almost an hour later (I was at the end of the line) I was sitting on the curb with said sleepygrumpytiredirritableunhappygrateful campers waiting for the shuttle to arrive.

Now for any of you who know me, I am really not a night owl.  I am normally up around 5 a.m. each morning and off to the gym by 5:45 with a dear friend.  We burn lots of steam, solve the problems of the world, and come out a little over an hour later dripping wet but happy and grateful.

So when I arrived at said hotel late last evening I knew there would not be much sleep to follow.  I set my watch, requested a wake up call (you can’t be too careful about these things) and laid my very sleepy head down for a few hours sleep.

When my running watch went off this morning I was out of bed before I could even blink.  I turned on the coffee pot and went in to brush my teeth.  I waited for the back up call to come through, not wanting to be in the shower with the phone ringing incessantly.  2 minutes, 3 minutes, 4 minutes passed and I am waiting (impatiently as you can tell).  I thought about the fact that my watch is a few minutes ahead of my bedside clock at home and decided to pop in the shower anyway.

I was dripping wet before it dawned on me that, HELLO!  My watch is on Eastern time zone and Birmingham, Alabama is central time zone.  It was really an hour earlier and I was wide awake.

So here I sit, reflecting on the humor of my life, and grateful for another reminder that I can at times be just a wee bit hyper-vigilant.   For those reading this, you probably get it.  Volumes have been written about  this tendency among parents of special needs kids.  It is one of the reasons I run – it burns some of that stress off and allows me to rest more effectively.

So I am up and ready an hour early, sitting at the airport now.  Good morning to you too.

Wide awake Alert and Strong,

Shannon

Filed Under: Gratitude, humor
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