Spittin’ in the Wind

Consider the work of God: who can make straight what He has made crooked?  In the day of prosperity be joyful, BUT in the day of adversity consider that God has made the one side by side with the other, so that man may not find out anything that shall be after him.   Ecclesiastes 7:13, 14

Believe it or not, God makes some things c-r-o-o-k-e-d on purpose, and you are WASTING YOUR TIME if you try to straighten them out. I’ve tried. The results are about the same as spittin’ into the wind.

So, if I could go back in time (which, btw, I have NO desire to do), and have a frank talk with myself (like I don’t already talk to myself), THIS is (some) of what I would say:

  1. Honey, relax. If your children get to high school (and I know that’s an “if”), they will NOT be in diapers. (I thought we would never get through potty-training.)
  2. Yes, God knew EXACTLY what He was doing when He assigned each child (regardless of temperament, talents, or disabilities) to you, to parent.
  3. Don’t freak out when your mother, who you greatly admire, declares none of her children were anything like this. God didn’t give them to her.
  4. I know you don’t think you need to change, but you do. And wonder of wonders, this husband, this child, this season of life, is going to help you change.
  5. Remember: Jesus saves. Not education.
  6. No matter what anyone says, there is no one “right” way to educate a child.
  7. Welcome to war. There is no AWOL, so quit looking for an out. Make it count – ask God for ALL the spoils.
  8. You will need help, so get over it, humble yourself, and ask.  Lone Rangers do not last long.
  9. Suffering comes to EVERYONE. (I thought if I did enough right, I could avoid pain. Wrong.)
  10. Sweetie, God is perfect goodness, so His plan for you is perfectly good. It is never, ever pointless pain.
  11. There are RICHES in this dark place. Mine those treasures, girl.
  12. God will NOT fail you or your children. Ever.
  13. Sometimes you WILL feel BETRAYED by God, but it will never be true.
  14. I know you think this will never happen, but when you see the end results, you will completely AGREE with His choices for your life!
  15. You can (and will) live without everything you THINK you need (marriage, friends, children, good reputation, being understood, predictability) but you cannot live without GOD and His Word.

Live and learn. I know I am preaching to the choir….

Affectionately,

Joan

Contact: Joansjourney@chosenfamilies.org

Ambiguity

Trust in the LordI was being interviewed as a student by the Dean of Students at a large university for an assistantship in the department. Here I was in my mid twenties being asked a question and not having any idea what the word she used meant. After learning what it meant, I still wondered how I could have spent that long in life without encountering the word yet having lived it so profusely. (I also felt very stupid and still do when I think back on it.) The question was ” How do you handle ambiguity?” I had to ask her what it meant. Somehow I got the job which gave me a few more lessons in ambiguity.

The right word or term can bring clarity to a feeling or situation. Knowing a right word or right term can begin the process of healing, the process of finding a solution or at least send me in the right direction for help to deal with an unsolvable situation.

In a way we have been parents twice. The first time was with our boys who were a joy to raise. They followed normal patterns and they are now into their young adulthood, having launched and beginning relationships with significant others. (I am hoping for at least one wedding next summer.) Ambiguity was at a normal level.

Then we had the girls and I loved it! Finally, dolls, ruffles, lace, cute hairdos and sweet times. It wasn’t long before I was introduced to First Steps, IEPs and developmental delays. I was up to the challenge and enjoyed the journey of learning about them and loving them. Ambiguity was taking a back seat; until now!

Now, uncertainty is hitting us square in the face. It is so different than anxiety. I am relaxed in knowing that God has a future for them and that He is in control. It’s the “me” that is confusing.

I am uncertain with the decision of how we are educating them, especially Cassie. She is now working toward her GED. We could still send her to school for her Sophomore year if she insists on being lazy and unhelpful. Does she need the structure? Can she endure the environment? Can she endure the structure? Should we make her endure the structure to combat her laziness and bad use of time? Do we insist on her getting a job?  There are many more questions and they remain that because I see no clear answers.

What does Borderline Intellectual functioning and mildly mentally handicapped mean in disciplining them, pushing them, not pushing them…?   We want to raise producers, not consumers. What is the level of  maturity that we should expect from them? I have no idea. I just know I don’t like what I see.  I want some clear cut guidelines. I want to do this parenting right!!!

Both girls are rebellious, snitty, and just plain mean, especially to me. We are exhausted in trying to put a stop to it. We are both nearing 60 and we find that the energy and excitement isn’t there any more. Compound this with all the ambiguity and you know the only way we can rise above it is with His strength.

The familiar verse comes to my mind and heart. “Trust in the Lord with all of your heart and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your path.” (Proverbs 3:5-6)

As I see it, the new word is “steps”.   You have to take steps to walk down a path.  Take steps – one at a time- in the midst of all the confusion.  First step:  Ignore the ambiguity for now and deal with what is obvious. What I know for certain is that what I am seeing now in their behavior is not acceptable.  The steps will be softer than how I feel, but directional and intentional.   In the midst of dealing with aging parents and their immediate needs, my husband and I will meet, hopefully eating gyros sandwiches, and plan the steps we will take to begin the process of making life at home bearable again and turning them into productive young women.  Then we will meet with the girls and let them in on the plan.  If they rebel, I guess the steps will have to have more muscle.   If we are intentional now with what we do know, maybe the rest will fall in place.  I will let you know how this turns out.  If we don’t act now, summer could be unbearable.   I also want you to know that we have friends praying for us because we have been open about the situation, but please, don’t let that stop you from also praying for us and everyone on this blog!   There is strength in prayer!

Jan

Contact: jan@chosenfamilies.org

Taking a Break…or Broken

“Come unto me, all ye that labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.”  Matthew 11:28-30

It seems straightforward enough, doesn’t it? When exhausted from our work, we are to go to the Master. We are to attach ourselves, side by side, to Him and learn of Him. This is how we find the rest that our souls so deeply desire.

In March, I needed a break. I’d had a tough fall and winter, trying to manage to be “Mom and Dad” in the fall semester evenings had been truly stressful and I’d gotten sick, time and again. My husband’s work schedule for the fall put him teaching every afternoon and evening, meaning that I was the one to deal with homework issues, supper, and getting the kids ready for bed and tucked in each night. Many moms manage this, right?

I am not like most moms. I have a chronic illness that causes me to fatigue easily. In addition, stress triggers the symptoms (from difficulty with mobility to difficulty thinking … and several other, more nasty symptoms). Plug in a child with Anxiety/OCD and a sibling experiencing his first year of middle school (and the uglier side of puberty), and you have my worst fall semester … ever.

I needed a break. I ached to see a glimpse of spring, after the long bleak winter. In March, I was given the gift of a week to “get away” to my parents’ home in the south, where spring was “springing up” already. It WAS wonderful to see blossoms everywhere and green leaves, again. Therapeutic is a word I’d use. I attempted to read my Bible more often and seek the Lord, but not quite enough. I spent more time drinking in the beauty of His creation than the refreshing of His Word.
Flory didn’t like me being away. She fought it, tooth and nail, before I left. I assured her that I would talk to her on the phone at night, or in the mornings. Each phone call, however, included a demand at the end: “Come home, Mommy. Right now; today.” But “Mommy” needed a break.

After a sweet period of rest and fun with my parents and my sister-in-law, we loaded up the car and headed back north. Even the road trips, to and from, were a slice of enjoyment for me. Long talks, laughter, no dishes or laundry, and lots of scenery were a great source of refreshment to me.

Not long after I came home, though, I experienced an exacerbation of my symptoms … right before our family was to go out of town to visit my husband’s relatives. A hospital stay is not exactly my idea of the perfect getaway. However, my body was telling me that I needed another “break.” Again, Flory missed me, greatly. My illness is almost like a “trigger” for her anxieties. She and her brother came a few times while I was there; sitting on my bed and watching television, reading books, and/or updating me on all that was going on in their lives. God used that time, oddly enough, for me to forge a few friendships (a kind and funny nurse and a roommate who took the time to get to know me and enjoy some laughter, despite our circumstances).

Now, I find I need a break again. Life’s ups and downs , the complications of having a chronic illness, my kids’ experiences as they both are entering the roller coaster of puberty … all are working together to make me feel, well, broken. Perhaps this time, before our family vacation that promises fun and refreshing, I will heed the words of the gospel of Matthew. In order to TRULY be the wife and mother I need to be for my family, I don’t need a “break.” I am already broken. I need to come unto the Master … for true rest.

Learning of Him,

Grace

Firstborn Newborns

Mom and sleeping babyMy first baby just had her first baby!!

I can’t find the words to describe what I feel when I hold my baby’s baby in my arms…

She is so perfectly beautiful!!

Her full bodied stretches amaze me,

And her wide mouthed yawns amuse me…

Her utter stillness (when something catches her attention) awes me…

And sheer magnitude of what God has done between those two births, 25 years apart, is profoundly affecting me.

My firstborn was born into a manic crises (a story for another blog – after I’ve had SLEEP) … and in all my exhaustion and pain back then, I could not imagine anything in my future being worth living for. Certainly not something as amazing and powerfully good as holding HER firstborn! To me, at the time, my future held nothing but gloom and doom. “Gloom, despair, and agony on me! Deep dark depression, excessive misery! … if it weren’t for bad luck, I’d have no luck at all – gloom, despair, and agony on me!” (a song from the old TV show, Hee Haw)

It astounds me God wove all these meaningful tender newborn moments into my future.

During those dark days though, my mama shared a tender poem, to encourage her firstborn (me).  This is for any of you in our Chosen Families family, who feel this way:

I’m too tired to trust and too tired to pray,

Said one, as the over-taxed strength gave way.

The conscious thought by my mind possessed,

Is, oh, could I just drop it all and rest.

 

Will God forgive me, do you suppose,

If I go right to sleep as a baby goes,

Without an asking if I may,

Without ever trying to trust and pray?

Will God forgive you? Why think, dear heart,

When language to you was an unknown art,

Did a mother deny you needed rest,

Or refuse to pillow your head on her breast?

Did she let you want when you could not ask?

Did she set her child an unequal task?

Or did she cradle you in her arms,

And then guard your slumber against alarms?

Ah, how quick was her mother love to see,

The unconscious yearnings of infancy,

When you’ve grown too tired to trust and pray,

When over-wrought nature has quite given way;

Then just drop it all, and give up to rest, (mama starred this line)

As you used to do on a mother’s breast,

He knows all about it – the dear Lord knows,

So just go to sleep as a baby goes;

Without even asking if you may,

God knows when His child is too tired to pray.

He judges not solely by uttered prayer,

He knows when the yearnings of love are there.

He knows you do pray, He knows you do trust,

And He knows, too, the limits of poor weak dust.

Oh, the wonderful sympathy of Christ,

For His chosen ones in that midnight tryst,

When He bade them sleep and take their rest,

While on Him the guilt of the whole world pressed –

You’ve given your life up to Him to keep,

Then don’t be afraid to go right to sleep.

– Ella Conrad Cowherd

(one comment: Jesus didn’t “bade them sleep” as in “sweet dreams!” Actually, He urged them to pray, at the worst moment of His life – and they failed Him completely. But their failure did not change His mind. He accepted their limitations, and saved them anyway.)

Sleepy and still saved,

Joan

 

 

Photo credit: David Castillo Dominici/Freedigitalphoto.net

 

 

 

Audio of Interview, 5-13-13

For those interested in the interview with Janet Parshall, further discussing suicide and the response of the church, you can listen here.

I pray this conversation will continue the openness that has begun.

Warmly,

Shannon

 

 

Seeing Red

Jesse has an infatuation with firefighters. And, for that matter, fire trucks, fire engines, and firehouses.

Not unusual, you say? Little boys love firefighters, policemen, army men, you add? True. So, let me elaborate a bit.

He’s had 2 fire-themed birthday parties, dressed as a firefighter for 3 consecutive Halloweens, owns 4 fire fighter costumes, 1 fire fighter umbrella and raincoat set, 4 model fire house sets, 22 fire engines and 31 firefighter figurines of various size. Each day, he methodically lays out his firefighter costume, invites me into his “fire house” and shows me his gear before suiting up. We have made no fewer than 6 impromptu stops at fire stations we’ve passed on our journeys, and have waylaid something like 10 firefighters from their very real duties in order that Jesse might sit on one of the engines, wear a helmet, or ask “where is your black and white fire dog?” (He’s been often disappointed to learn that Dalmatians are mostly relics of a by-gone firefighting age. If he sees a Dalmatian in his firefighter story book, he LITERALLY expects to see one at the fire house. That literal nature? Yep, that’s ASD.) There are even firefighter coloring books, firefighter pajamas, firefighter DVDs. For a period of time, all Jesse would watch on television was a 1987 firefighter training video we were able to stream through Netflix. He could recite it word for word. It started out as cute. Sometime after viewing 15, it got downright annoying. He had all of us, and PARTICULARLY his older, emotionally labile brother Noah with ASD himself, seeing red.

As you’ve probably guessed by now, a restricted or limited interest (one that plays out in real life more like an obsession) is one of the hallmarks of an Autism Spectrum Disorder (ASD). These are kids who know every Star Wars character ever introduced, or who can name every dinosaur that ever trod the earth. But I was surprised to discover recently that the MORE restricted the interest, the HIGHER the anxiety – that the latter often incites the former. http://ultimateautismguide.com/2011/06/autism-news-anxiety-restricted-interests/  And, with anxiety being the defining emotion of Asperger’s and other ASD’s, it goes to reason that these kids are destined to experience both – some, more intensely than others. I thought Noah was one for restricted interests, but my sweet Jesse has shown the capability to outpace him red engine for red engine.

This morning, I walked into Jesse’s room and found yet another pile of engines and figures to be re-shelved:

Just a small selection.

But this time, instead of seeing the mess, I HEARD what he was saying. So I sat down.

“Can I visit your fire station?”

He grinned, freckles and dimples squinched up. “Yes. Yes, you can.”

Then I asked Jesse why he liked firefighters so much.

“Because.”

“’Because’ is not really an answer, Jesse. Why do you like them more than anything else?”

“Because they put out fires and save people.”

They “save people.” I exhaled, and squeezed my arms around him. I will do what I can, with God’s help, to make him feel safe and ease his worried mind.

And in the meantime, I suppose there are worse things he could be interested in.

- Sarah

Of Isolation and Personal Responsibility

E Elliott quoteI have been pondering of late this sense of isolation that seems to go with hidden disabilities.  I have to acknowledge that some of it is my responsibility.  In order to move toward change we have to acknowledge our piece and deal with it.  We also need to share with others ways they can help us.  But one without the other is not likely to be effective.

So my piece.  The reality is that sometimes engaging in the “normal” or “typical” things in others’ lives just screams at me how not typical our life is. (Note, I DO recognize that “atypical” would be the proper word there but somehow it doesn’t feel as emphatic.  Go figure.)  Sometimes I can manage this and be o.k. and I participate.  Sometimes it is so painful as to be almost unbearable.  In those moments, I tend to not engage.  Is that the fault of others?  Of course not.  They are living their lives, celebrating their moments.  I want to celebrate with them.  How do I do that through my own ongoing grief…?  Not sure of the answer to that one. And in those moments I feel like some of them are thinking that I just need to get over any grief and deal with it…. The challenge, of course, is that the grief is not an event in time to “get over.”  It is an ongoing death upon death that is hard to explain unless you are living that kind of life also.

It isn’t even something I can wrap words around.  I am sitting here weeping as I type.  It just is.  It just is what it is.

Perhaps the day will come when those moments will not be so raw.  If so, I have not grown that much yet.  I am often not able to be there.  I want to be but I don’t know how.

Honestly that distresses me.  But I don’t know how to change it.  I take life as it comes and try to process as I go. I am not typically one who holds on to past offenses (real or perceived). I typically process and talk through as I go.

There are moments, however, when the processing is so beyond painful that I can’t do it with others.  Perhaps if I did they would understand more of our journey.  In that way, I suppose I may keep them from understanding.  Perhaps that is part of why this journey feels lonely at times.  It isn’t that people aren’t trying to understand. Sometimes they really are.  But they don’t understand.  And some of that responsibility may lie at my feet.  Because the most painful moments are borne alone or with our family… not shared.  Not borne publically.

So I am ponderous today.  How do we make things better in this area? Is it possible for it to be better?  Or is this just part of the hidden disability journey?  I would welcome your thoughts.

Moving toward the goal of true maturity,

Yours,

Shannon

Contact: shannon@chosenfamilies.org

Get Thee to a Bible Study, Girl!

Let us hold fast the confession of our hope without wavering (not my strong point),

for He who promised is faithful; (my unpredictable life needs His kind of steadiness )

and let us consider how to stimulate one another to love and good deeds, (the opposite of being rash)

not forsaking our own assembling together, as is the habit of some,

but encouraging one another; (I need it)

and all the more as you see the day drawing near. (“all the more” sounds good to me)

Hebrews 10:23-25

I know my journey has been isolating in significant and painful ways … but I have NOT been isolated from studying the Bible with other women.

That may sound like No Big Deal to you, but I’m here to tell you many times it’s been THE difference between spiritual life and even physical death for me. I was never made to live without God’s Word, and I am not cut out to be a Lone Ranger.

I remember attending a women’s Bible study right after I married. I had no idea why my marriage was so hard and draining (I didn’t know what “bipolar” or “manic” really was) but I felt literally infused with hope and strength after every meeting. That fellowship around God’s Word did not change my husband or his diagnosis, but it strengthened me. In fact (it’s no secret) I know without a doubt I would’ve bailed out of my marriage, my faith, or my life itself if it had not been for godly women pouring God’s truth into my life each week – and I say this after being born in a pastor’s home, and attending a Christian college!

On the short list, studying God’s word with other women anchors me (in an inconsistent, unpredictable life), transforms me (from naïve to more discerning), convicts me (gently), and sustains me (or I’d die of discouragement). When my kids were little, I could’ve climbed Mt. Everest with less effort than it took to get us out the door every week to Bible study (and I was usually late) but I was going to get there, or die trying!

It would be years before I understood enough of what was happening at home to explain it to anyone else – but that was OK at the time. The time for disclosure and education would come later. Those women were not equipped to “fix” my life. They just gave me healthy love and God’s Word. Every week.

This year I had an epiphany of sorts: women’s Bible study is literally THE single constant of my 28 years of marriage. That’s saying something. If you have bipolar family members, you know what I mean. I’ve been in and out of every other activity… children choir helper, nursing, dance recitals, home schooler, public school and sports mom, caring for aging parents, college mom … everything except women’s Bible study.

It doesn’t mean I am devout. It means Bible study and fellowship are critical.

Are you in a good Bible study? If not, will you consider joining one? It doesn’t matter if you’ve never done it, or used to teach it! Just make sure they believe God so greatly loved and dearly prized the world that He gave up His only begotten unique Son, so that whoever believes in (trusts in, clings to, relies on) Him shall not perish (come to destruction, be lost) but have eternal (everlasting) life. (John 3:16 Ampified) If you find one like that, then “get thee hence to it, pronto”-  some way, some where, some how!

Wouldn’t it be amazing if we were all in the same place and could study the Word together?? …heaven must be like that….

Love you,

Joan

A Walk in His Shoes

Tennis shows and soccer ballJesse threw a fit this morning. Why? Because we asked him to put his clothes on. “I want to stay in my jammies!” he screamed. “I don’t want my clothes!!” The clothes were scratchy and cold; his pj’s were soft and room temperature. Later, at the breakfast table, he yelled at me when my dabbing with a napkin proved inadequate to remove the syrup from his jammies. “Get it off!” he howled. “It’s still sticky!” A light touch is like a thousand tiny feathers to Jesse; a warm room is an oven. He has been known to strip completely naked in the wee hours, only to greet our saucer eyes and gaping mouths the next morning with the explanation, “because I was hot!” He prefers dark rooms to light, spicy to bland, movement to stillness. As a child with ASD, Jesse’s world looks, feels, sounds, and smells differently from that of the neurotypical, and he therefore exhibits strong preferences for the things he likes or alternatively cannot tolerate. His brother, Noah for example still cannot eat a meal if there is a candle in eye range, because something about the consistency of the wax that sets him to vomiting.

In recognizing the differences between the sensory processing of ASD and non-ASD individuals, YouTube video footage proved illustrative recently. To the extent it could, it demonstrated what it’s like to walk in the shoes of someone who has a sensory processing disorder. And it gave me a near-instant injection of patience with Jesse. After a lunch consisting of a veggie wrap with hummus (the child can eat hummus by the spoonful, I believe somewhere he was tricked into believing it was peanut butter) I went to put my son in his pj’s (clean, of course – with no sticky residue). I did it slowly and quietly, rubbing his back as I did, bringing the stimulus in his world down to a manageable level. I buried him in his “stuffies” (his stuffed animals) as he requested, and lay with him until he got sleepy. And then I put his tiny shoes back under the bed – the ones that I found could also fit my grown-up feet.

- Sarah

Contact: Sarah@chosenfamilies.org

 

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

Clueless Meets Titus Woman

My husband’s 1st manic episode (in our marriage) collided with the birth of our 1st baby. I didn’t have to be Einstein to realize I was in WAY over my head. My baby was crying all the time, my husband never slept, AND he thought the world was coming to an end, literally.

Now, I had taken psychology courses and even done a few nursing rotations on psych floors – but NONE of that education helped me recognize a manic husband. Scary, huh? By the time he was hospitalized, it became crystal clear how clueless I had been. Introducing words like “hypomanic” and “manic” to my vocabulary eventually helped me understand my 1st 18 months of marriage….

But I was still pretty lost. I had NO idea if I was loving my husband in any way remotely biblical. I felt my marriage had suddenly fallen into some category that was not even IN the Bible. I had had to call 911 on my own husband because he was no longer safe around me and our newborn baby – THAT just isn’t in the Bible anywhere.

One day I read these exact words, “… Older women … are to be reverent in their behavior, not malicious gossips nor enslaved to much wine, teaching what is good, so that they may encourage the young women to love their husbands, to love their children, to be sensible, pure, workers at home, kind, being subject to their own husbands, so that the word of God will not be dishonored. Titus 2:3-5

Well there. I definitely needed one of those “older women”!

I summoned enough courage to call the only older woman I knew in our church … You know anyone willing to be a Titus woman to someone like (as needy as) me?  - embarrassing, but I was desperate. I was so relieved when she said she would pray. Sure enough, a few days later she gave me a name. Since thousands attended our church, it was no surprise I didn’t have the slightest clue who it was….

Soo I never made the call. How could I ask a complete stranger for the level of help I knew I needed??

Three months later it was my turn to host the wives from our young married class. Someone had invited a guest speaker, but I hadn’t been part of that planning. When I opened the door of our tiny duplex to greet our guest, she introduced herself, and I recognized “the name” I had not called. Wow. 

I may have been chicken, but I was not blind. God personally brought her TO MY DOOR.

But did I say anything to her? Nooo.

SO about midway through her sharing, she mentioned (as a side note) she had begun mentoring a few young wives, about 3 months ago. She had been praying for women to fill the 4 seats at her breakfast table, but only 3 seats were filled….

I had been uncertain about so many things that year, but I was SURE I belonged in that 4th seat.  GOD lovingly prepared a place for me, and held it, every week, even when  I didn’t make the call …. He was waiting, she was waiting….

And this is what I love about Jesus: He knew I was too weak to initiate (that lesson would come later). He all but said out loud, “Here honey, I’m helping you….”

I couldn’t stand it any longer. That night I told her I was her “vacant” seat. I couldn’t believe how delighted she was! and how loving … it made me regret every single week I had missed.

For 5 straight years, every blessed Tuesday morning, I sat at her little round yellow table in her kitchen, where Jesus taught me how to love my bipolar husband.

When I get discouraged (like now) I remember this miracle, and it renews my confidence in God’s loving plans for me and my husband….

… accuser of our brethren has been thrown down,

he who accuses them before our God day and night.

 And they overcame him

because of the blood of the Lamb

and

because of the word of their testimony….

Revelation 12:10-11

 

Hold On, by 33 Miles

 

…a part of my testimony,

Joan