Thirty-One Things - The Most Important Thing

The most important thing…

Profound question. There are constant priorities and then those that shift. This weekend I have thought a lot about it with opportunities that have presented itself.

I’ve been thinking a lot about having an influence on others. Being faithful to my responsibilities. Investing my life into others.

Since Elisabeth Elliot died this summer, I was researching some of her work and came across a youtube video about “A Grandmother's Influence.” When Noah and/or Elijah come to visit, they know to leave their DS’s at home. They know there are other things to do at Mamaw’s. I’ve always given them my attention. But Elisabeth spoke about writing letters and being present when you are apart.  I wrote them a card when they started school.  So proud of them. Lydia said Noah put it on the refrigerator and Elijah put the photo in their room.

This summer I had Noah and Elijah help with the flowers. They planted marigold seeds and sunflower seeds.  Today they came over for the afternoon.  They were amazed at how big the sunflowers were and Elijah was so proud of his orange and yellow marigolds.  Elijah helped trim the dead flowers off the butterfly bush. They were thrilled to discover a big grasshopper on one of the stems. Hot dogs and ice cream sandwiches. And two games of Quirkle. It was an investment for eternity.

Caleb is in the hospital. Admitted since late Friday night. He is so vulnerable and so does not understand. He is my responsibility. A God-given responsibility. Seeing him in that hospital bed, my heart swelled and I knew what I already knew.

Once in a golden hour, I cast to earth a seed.

Up there came a flower.  The people said, a weed.

--Alfred Lord Tennyson

My life is dedicated to showing the world the flower that Caleb is.

Renewing the Mind in the Middle of Painful Change - Conclusion

I believe wholeheartedly that following Christ means a pathway of bends in the road, so we cannot see what lies ahead...but trust Him one day at a time.  I had no idea whatsoever what lay ahead when Caleb was born...but Jesus led me all the way.

After the hearing, I knew the decision would move at the pace of bureaucracy, and it would be months until I heard if we had prevailed or if we did not, which meant we would have to appeal to a higher level.

It was amazing the peace I had after that hearing.  I hardly thought about the decision.  Here was the timeline:

• November 1997 - Caleb was hospitalized in Pittsburgh
• January 1998 - Caleb went into a re-opened group home near me
• March 1998 - Informed funding for those services would cease April 1; filed due process through Ohio Legal Rights Service against our local county board of developmental disabilities
• July 1998 - Feature article about case appeared in The Cleveland Plain Dealer
• August 1998 - Administrative hearing; then hearing before the county board members

It was December.  I was sitting in a conference room waiting to meet with folks running Caleb's group home to talk about a behavior plan or something.  Kevin, Ron, and Heidi walked in and congratulated me.  For what????

I had not heard yet.  But the board members reversed the superintendent's decision, and Caleb would continue to get residential services just minutes away from me.  I would remain his mother, guardian, decision-maker, advocate, case manager, and his constant.  Caleb would be assured of a life of safety, contentment, and functioning to his highest potential.

So back to Genesis 50:20:  

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

So how did Caleb's autism and this decision affect the lives of others?  I don't have enough time, but here are a just a few ways.

• A new group home was created based on Caleb's needs making openings for 3 additional guys to have a place in a residential setting.  (There are long waiting lists!)
• Caleb's needs created 14 autism specialized classrooms in our local school district.
• Because of my experience and my job, I was able to walk beside a parent during her two-year journey with her son to fight this same fight. 

And I could go on...

I still hurt daily and yet the tears are what create the rainbows I've experienced to see God's hand on Caleb's life.  Without the renewal of God's word and leaning totally on Him (and not following after the idols of power/control, affirmation/approval, and security/comfort), I would not have made it.

But as the Psalmist wrote, "Surely the Lord has done this and it is marvelous in our eyes!"

Renewing the Mind in the Middle of Painful Change - Part 5

I sat around a large table, next to my attorney...and the county board superintendent sat on the other side, next to his attorney.  All witnesses, including myself, were under oath.  There was a wonderful feature article in the Cleveland newspaper about this case.  At this point, my hands were wide open and I knew just as Abraham laid Isaac on the altar...so had I placed Caleb on the altar of God's will.

The Sunday prior, our pastor preached on Nehemiah 4.  I remember it was incredibly powerful!  And somehow the pastor referred to the story of Joshua and Caleb in an illustration and stated boldly, "Caleb has a great God!"  I wrote it in the margin of Nehemiah 4.  I had also underlined passages in that chapter that spoke directly to me about the opposition I would soon face.

They all plotted together to come and fight against Jerusalem and stir up trouble against it.  Nehemiah 4:8 (NIV)

 Don't be afraid of them!  Remember the Lord, who is great and awesome, and fight for your families, your sons and your daughters, your wives and your homes. Nehemiah 4:14b (NIV)

Our God will fight for us! Nehemiah 4:20b 

Was that sermon a coincidence?  Absolutely not!  And I had my Bible laid open to Nehemiah 4 during the hearing.  God whispered peace to my heart through His word.

I had no agenda but what was in Caleb's best interest...and what was God's will.  None of our witnesses had an agenda different than that.  Caleb's neurologist testified as expert testimony without charging a dime.  All of us had only one thing to present...the truth. And the rest was left in God's hands.

Tomorrow...the verdict and the conclusion.

Renewing the Mind in the Middle of Painful Change - Part 4

After several months, the county agency providing supports to individuals with developmental disabilities and their families no longer wanted to pay for Caleb's intense programming.  At one point it was costing $300 per diem.  As the superintendent said to me,

"I'm not interested in taking care of your son so you can take Caribbean cruises."

It was cruel and a slap in the face...as if that was my plan!  I wanted three things for Caleb:  to be safe, able to function, and contentment.   That was impossible given Caleb's inherent issues in a family home (plus we were doing it alone).  Even his neurologist (a MAJOR autism expert) concurred that Caleb's needs were beyond the capacity of any family.

With the help of Ohio Legal Rights Service, I sued the funding agency who wanted to stop services.

Out on a limb for what was best for Caleb...the stakes were HIGH.  If we lost...if the agency could prove that Caleb no longer needed these services...I could lose custody.  But just as the pioneers traversed an unknown land...filled with dangers they could not predict...I refused to be deterred because my focus was on what Caleb needed, not me.

To fight for your 9 year old son to live outside of his home is so counter-intuitive as a mother.  I prayed for guidance and peace and confirmation that I was doing the right thing.  Secretly, I wanted a sign.  God brought one that renewed my mind and gave me amazing peace.

Sunday noon, after church.  Pulling into the driveway after church, I noticed a baby sparrow on the ground beneath a nest that had been built on the ledge of a 2nd floor window air conditioner at the house next door.  Getting the ladder out, the bird was placed back in the nest -- but the mother quickly kicked the baby bird out.  I called the park service to get some advice.  The naturalist on the phone told me if the baby had feathers it was probably time for the baby to go...that it was best to let nature take its course.  Then he said, "Do not worry...that mom's job is not over.  She will continue monitor the baby on the ground to ensure its safety from harm."

I hung up in tears.  God had used birds before to speak to me.  God had given me a tremendous gift of a new perspective, a renewal of my mind, convincing me that beyond a shadow of a doubt that this was part of His plan.  I never looked back.  That did not mean, however, that it did not hurt.

And I embrace the verse:

What is the price of two sparrows--one copper coin?  But not a single sparrow can fall to the ground without your Father knowing it...So don't be afraid; you are more valuable to God than a whole flock of sparrows.  Matthew 10:31, 33 (NLT)

Isn't God's word powerful?

Tomorrow -- the legal process begins.
 

Renewing the Mind in the Middle of Painful Change - Part 3

Mea culpa to my readers...yesterday I came home from work exhausted and went to bed early...so I apologize.  Back to my story...

Despite my quest to help get Caleb all I could that would serve his attainment of his highest potential (and at the same time to defer my pain and at least pretend I had some control), while Caleb obtained the best services and education possible at that time, his autism  was swallowing him whole.  At age 8, my darling boy was still nonverbal, incontinent, becoming continually agitated, becoming aggressive, becoming destructive.  He was no longer safe, no longer functioning, and definitely not content.  I did not know how to help him.  My marriage was over.  I had no idea the price my daughter had paid as Caleb took my entire focus.

Eventually, my mother and I drove him to Western Psychiatric Institute and Clinic, part of the University of Pittsburgh that had a psychiatric ward for children and adolescents with developmental disabilities and psychiatric manifestations.  He was now a danger to us and to himself.  He was admitted for 30 days for further assessment, adjust medications, and make programming recommendations for increased opportunity for success at home and at school.

Caleb's autism we now knew was extremely severe.  His issues were inherent; part of his underlying disability.  There were three things that he desperately needed to make sense of his world and to not be in so much distress.  They were:

• A controlled environment
• Behavioral programming
• And structure and predictability

He did not come home to me.  The county re-opened a closed group home (it had been a convent at one time) with one-on-one staff where the environment was controlled, structure could be provided, and they could begin behavioral programming.  This was in January.

My heart was crushed with excruciating pain of a mother who felt helpless...hopeless...

But the Lord is close to the brokenhearted and saves the crushed in spirit. --Psalm 34:18 (ESV)

And He was...

Until tomorrow...

Renewing the Mind in the Middle of Painful Change - Part 2

I wanted those days back...but they were gone forever.

Normalcy was out the window...my world became about fighting to get Caleb services, trying to keep a child safe who had no fear and very little sense of pain, advocating for him to be included as much as possible with other children, and trying to manage a child with whom I could barely communicate.  I had this highly active child who was often agitated and all my interventions seemed to fall flat and not make much difference.

When I was carrying Caleb, I knew he was a boy and named him Caleb due to Numbers 14:24:

But because my servant, Caleb, has a different spirit and follows me wholeheartedly, I will bring him into the land he went to, and his descendants will inherit it. (NIV)

Prior to his birth, I prayed that Caleb would be different...envisioning him as a man of God not afraid to be in the minority by proclaiming his Lord. How do I get my arms around this?  Lord...this was not what I meant when I prayed Caleb would be different!  Often I would have to renew my mind with:

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the hidden place, when I was woven together in the depths of the earth.  Your eyes saw my unformed body; all the days ordained for me were written in your book before one ever came to be. Psalm 139:13-16 (NIV)

I took my grief and channeled it into advocacy and activism...getting linked up early to others who were in the same boat only further down the river.  That is, other parents of children with disabilities...many who were also Christians.  I was a sponge soaking in all I could about Caleb's rights, the special education system, learning a whole new language, and understanding autism.  Often I used this to defer my sadness...but what I did not know was that God was preparing me and Caleb for so much more.

In time I would be able to say the same as Joseph:

You (Satan) intended to harm me, but God intended it for good to accomplish what is being done, the saving of many lives. Genesis 50:20 (NIV)

More tomorrow...

Renewing the Mind in the Middle of Painful Change - Part I

Honestly, I don't know if I can write this...  It began 25 years ago (and hasn't ended), but yet, it is still so painful.  Without this story, however, my life would be drastically different.

I gave birth to a beautiful little boy, Caleb, in January 1989.  He stole my heart and life could not be better.  I had my happy little family:  mommy, daddy, my girl, my boy.  He was bright...interactive...smiled easily...affectionate.  But by 18 months, there was reason for concern.  He had lost his words, he was falling behind developmentally, he became more agitated and harder to know how to parent him.

It wasn't until he was four that we were rescued from the quicksand of "developmental delay" only to face the 40,000 feet high mountain called autism.

I could only remember the prayer I had prayed before he was born:

For this child I prayed and the Lord has granted me my petition that I made to Him.  Therefore I have lent Him to the Lord, for as long as he lives, he is lent to the Lord.  I Samuel 1:27 (ESV)

 Yet, I was crushed...grieving and craving for the time back when all seemed right in my world.  I needed control.  I needed security and comfort.  I needed approval...reassurance that I had not failed as a mother.

I was broken.  (continued tomorrow)

Astonished and Amazed - A Friday Find

A week ago I wrote this post...

A week ago I opted to rest and rely on a God who loved Caleb far beyond my capacity...

Whose wisdom is beyond my ability to comprehend...

And seek His solution...His way.

Monday I was humbled, by a voice on the end of the phone, to hear that the Lord had "turned the heart of the king"...

That, indeed, Caleb has a great God...

And all the barriers that were standing in the way of Caleb receiving the services he deserved and needed for a meaningful life crumbled by standing firm and trusting God.

There are no words that can express my awe of God's Divine intervention...

He is alive...He cares...He is involved!

Practicing Gratitude When You Don't Wanna

Hot, searing tears well up...pour out...sting...

No one warned me of the unrelenting power my children have over me...even as adults...

I hung up the phone.  Those who know me, know I've focused the past 22 years of my life on advocating for children and adults with severe disabilities AND their families...

Inspired by my courageous Caleb...

But today it all feels for naught as he is being terminated from his day program provider and the other options are not viable.  And barring a miracle (for which I still believe)...he will be at home, without structure and limited stimulation 24 hours a day.  It's complicated...a system that is to serve fails.

But my post is not about that...it was about giving you some context for what I write now.

Gratitude is easy in the nice warm fuzzies of life...it is practicing gratitude to God when the feeling is not there at all that it becomes a sacrifice...it is pure obedience.

Friday, Caleb, Edster and I went out for a drive in our mini-van.  I sat back with Caleb, helping him as he ate his lunch...only to have Caleb lay his head on my shoulder and lean up against me...for at least a half hour.

Caleb's autism tends to manifest itself like a pinball...pacing or moving to self-regulate.  Kodak moments don't come often.  But I am so grateful for those moments on Friday.

Yet...even without those moments...I will praise and express my thanksgiving to God...because He is worthy as I'm reminded in the Old Testament passage:

Though the fig tree should not blossom,    nor fruit be on the vines,the produce of the olive fail    and the fields yield no food,the flock be cut off from the fold    and there be no herd in the stalls,18 yet I will rejoice in the Lord;    I will take joy in the God of my salvation.  Habakkuk 3:17-18 (ESV)

 Caleb has a GREAT God...and I will take joy in Him.

A Cuppa Challenge Connected to One Little Word

My Beyond Layers class is coming to an end...it's been an amazing year...learning so much about editing, photography, life, and myself...plus meeting some wonderful women.

Day 101 brought a specific Challenge from Kim...

Make (or take) a photo with the following 3 items: a cup, a book, and an accessory. (think creatively on the accessory.... perhaps a favourite thing or even something unexpected.)

Experiment with different light and perspectives until you create the just right look and feel for your photo.

Edit the photo using one or both of Monday's textures (chaos and calamity).

  

 

 

I knew I wanted to incorporate this book...I have just begun to scratch the surface in reading it.  It is Susan Cain's book name Quiet: The Power of Introverts in a World that Cannot Stop Talking.  Knowing the book had strong colors of gray, bold red, and white...I knew my accessory choice would be limited.  I chose these red carnations.

 

This mug I had found just yesterday...I love the theme and the type was consistent with the font type on the book's dust jacket.  I loved the repeat of  the "Life is good" on the inside of the mug, as well.  I turned the tag on the teabag around to the plain side...typing the word "embrace"...my one little word.  Reading yesterday's post, you can see my reflection about embracing life and just to be born is a compliment from God.

 

But today it was around 60 degrees in Ohio in January...unheard of!  And I thought I would take my still outside to photograph...

 

 

The issue of introversion in a world that values extroversion is a new area of exploration for me...answering a lot of questions about myself and questioning if I've felt, at times, as if this value of extroversion has pressured me to live a double life at times?  This will be part of my year's pursuit in My Little Word in embracing who I truly am...with the unique gifts God has given me.

 

 



 

 

And then I wanted to bring to the forefront the words "a World That Can't Stop Talking."  I could not help but think about my son, Caleb, who cannot talk, but says so much, to people who stop and listen.  He communicates continually, if one takes the time to know him and read him.  He has touched many and has made lasting positive impressions on others in his own silent way.

 

But there is not a single person born who does not have a valuable contribution to the world...who has something to say.  As Susan Cain says, "Those with the best ideas are not always the ones doing all the talking."

 

This is going to be an interesting year!

 



Christmas and the Gift Unexpected

Merry Christmas!  What a beautiful time of year!  The Christmas season can be such a mix of emotions:  remembering Christmases past with fond memories but also with misty eyes as loved ones have gone to be with Jesus...no longer with us.  Or those who are ill.  And those who are hurting, are alone, or are unloved. 

And yet it is the one time when the world stops, and we have pause to remember the Greatest Gift given...Jesus, our Savior.  And that all overflows into an unbelievable outpouring of gratitude...not for the presents under the tree...but for the basics...the important stuff...family, friends, love, a roof over our heads, food on the table, freedom to read the Bible in our home without fear...even just being able to read, to see, to hear, to feel, to smell, to touch...the list is endless...we are so blessed!

 

 

And I think about how Harry toasted George in It's A Wonderful Life...saying "To the richest man in the world!"

 





And aren't we all?  But actually, my Christmas was made for me yesterday, by an UNEXPECTED gift!

Edster and I went to spend time with my son, Caleb, who has severe autism and is non-verbal.  We picked him up at his group home, which is about 10 minutes from us.  We always take him out for a while...he loves double cheeseburgers from McDonald's. 

Now, Caleb is not known for being still and sitting down for long periods of time.  He's been a pacing pinball since his youngest days.  But yesterday, he took my hand and pulled me into his room.  He laid on his bed putting his comforter over him.  He wanted me to snuggle up to him and lay with him.  I had an hour of precious moments stroking his face and singing in his ear...reminding me of when he was little.

This Kodak moment was an UNEXPECTED gift to me from him for Christmas...or maybe I was his gift, too!

But like Mary, who pondered all these things in her heart at Jesus' birth, I will hold on to this gift forever...

Five on Friday

 

 

It's back...!!!  Five Fact Friday!  A feature inspired from Kim and Xanthe's site.  But it has taken on a twist...it can be 5 anything (not just facts)...whatever rocks your boat.

 

So, today, it is five photos of a very special place...that has been on my mind the past week or so...

 

Here's the story...

 

 

 

I've written about my wonderful son, Caleb.  I "Googled" his full name one day ... about 8 years ago.  Just curious.

 

"C-A-L-E-B S-M-I-T-H" then hit "ENTER"...

 

Wow!  I couldn't believe it...there was a "Caleb Smith State Park."  I vowed if ever it became possible, if I was even remotely close, I would visit there.

 

In 2009, when Edster and I married...we honeymooned in Maine.  I had never been to Maine. 

 

This was my chance...

 

These photos were taken back in my point and shoot days...the park was beautiful, as I knew it would be.  I made quite a collection to make some photos to mount on the walls of Caleb's room at the group home.

 

But I've been concerned...

 

You see, Caleb Smith State Park is on Long Island, New York...one of areas of major New York City devastated by Hurricane Sandy at the end of October...

 

How has the park fared?  Is it salvageable?  Will I ever be able to return?

 

Like the spirit of New Yorkers, I believe the park will rebuild...and I will return...and take glorious photos...new ones for the walls of Caleb's room.

 

 

 

 



Day 26 ~ Three Gifts Extravagant

When I pondered this category...I looked up the word extravagant and came up with quite a few synonyms from the Thesarus:  crazy, flamboyant, exaggerated, expensive, unreasonable, unrestrained, over-the-top, extreme, fantastic, fancy, excessive, outrageous.

But I would like to approach this word from the perspective of one of my favorite verses:

Now to Him who is able to do far more abundantly than all that we ask or think...

Ephesians 3:20 (ESV)

 

God can do anything, you know—far more than you could ever imagine or guess or

request in your wildest dreams!

Ephesians 3:20 (The Message)

 

Doesn't that sound extravagant?

 

 

Day 26 ~ Three Gifts Extravagant

 

 

 

I did not dare dream, hope for, imagine that I would ever marry after a decade of singleness.  And I was okay with that ~~ content.  But extravagantly, over-the-top, the Lord brought Edster into my life, at just the right time.  I had no idea...no idea that when our paths providentially crossed on that Friday, June 6, 2008, that it would result into the love of a lifetime, allowing Edster and my dad to form a good relationship, giving my dad peace knowing God had bestowed a wonderful Christian man to his daughter for life.  Just over a year later from our meeting each other ~~ my father would be in heaven, entering the day before we married.

 

 

 

I know that same feeling my father must have felt.  Last December, my Lydia ~~ a single mother of two boys who are the heart of my heart ~~ she married a wonderful Christian man who adores her and the boys.  He could have only come along as an extravagant gift from her Savior.  And what a gift to me...peace knowing my daughter had a helpmate, a partner, a role model for those boys, and a godly man to lead their family.

 

 

Oh...before I go on to my third gift extravagant...with the gift of Edster came a bonus!  My stepdog Bruno!

 

 

 

I never dreamed that I would ever obtain a college degree and work in the field I so desired.  Caleb had taught me so much, and I was able to help other families facing some comparable challenges.  But I was an executive assistant full-time, doing good advocacy for others in addition to my job, wanting to make a difference...but I needed the credentials.  I had two years' college completed from thirty years' prior.  Single, sole-supporting...how could I, at age 46, work full-time, go to school full-time, and not only need to get my BSW, but I would also need to get my Master's degree? 

 

How do I explain that by age 49, I had graduated from Case Western Reserve University with distinction and am now in a position that is a dream come true?  A privilege?  A ministry? Making a difference...?  I cannot answer any other way except that God did it...an extravagant gift of love...He who makes the impossible, possible.

 

Yes, God's love, God's grace, God's goodness is extravagant...i.e., crazy, flamboyant, exaggerated, expensive, unreasonable, unrestrained, over-the-top, extreme, fantastic, fancy, excessive, outrageous...actually...

 

it defies words...

 

Watch for His extravagance this weekend!

 

 

 





Days 20 and 21 ~ Three Unconventional and Three Undervalued Gifts

It's hard to believe we're talking Days 20 and 21...didn't we just start this?

I sometimes think...when I am looking for gifts...I am looking for some great "aha!" moments...

Like the earth will shake and they will come announced, neatly wrapped...

Something out of the ordinary...

But not so...

Day 20 ~ Three Gifts Unconventional

Like this morning...(and I'm not being silly...)

A Q-tip to clean my ears...

A safety pin to fasten the part of the hem of my pants I noticed was torn as I was quickly getting ready for church...

This smooth-writing teal gel pen to take notes this morning as we pored over Hebrews 4:12-13.

Day 21 ~ Three Gifts Undervalued

Turning on my faucet with clean water readily available to drink...(how can we not value what 89% of the rest of world does not have access to?)

Speaking of access...do we realize the gift, the incredible gift, that we can connect from all over the world through the internet...although we may never meet face to face?

And did we value the moment that just passed...and the one we're in now...or are we looking ahead or too numbed to live in this very moment? 

These are the baby shoes worn by my Caleb...life, at best, is brief...it all goes so fast...

Value the moments...

Look for God's gifts...

Don't miss a single one...

Days 18 and 19 ~ Daring On to Crazy Joy

The weekend is here...

In full disclosure, I'm sitting up in bed in my jams writing this on my laptop...

No alarm, no schedule today...shower and clean up at will...now THAT'S a gift!

But my blog is on the itinerary...and my venture through the October Joy Dare!

Day 18 ~  One gift shared, saved, surrendered...

A gift from our good friends, Josh and Missi, sharing it with them and more than 54,000 folks, the inaugural Big 12 game for WVU against the Baylor Bears (I kept going "da Bears").  Several things happened that I had always wanted to experience:  seeing the Pride of West Virginia (WVU's marching band) form the state of West Virginia and then reverse it...marching down the field; staying til the end of a winning game to sing "Country Roads" along with the 54,000 others, along with John Denver; and hear Trace Adkins (who sang the national anthem).

On Valentine's Day last year...I was recovering from a medical procedure and went through these letters that had been saved for over sixty years.  I made this still from them.  They were love letters between my parents before they were married.  He was attending WVU in Morgantown (where my mother lived) but at the semester break, he went back to his home in Buckhannon, WV, two hours away.  It was a gift to read their playfulness with each other (my dad wrote almost the whole letter about returning back to Morgantown a few days later than planned...and then did a gotchya at the end.)  But the greatest gift was reading of their desire to serve Christ and to be certain their plans to marry was in line with God's will.

Wow...a gift surrendered! God has blessed me with legs I can use...legs that walk...legs that are sturdy.  And nearly every day I surrender that gift to Sidda, my cat, who loves to lay on them.  She's right there now on the other side of my laptop...sweet.

Day 19 ~ Three gifts unexpected...



















Truly...I don't mean to bring Edster into every blog entry...but he was a much unexpected gift.  I was content and satisfied with a decade of singleness.  Marriage was not something I was expecting again...







































Have you ever googled your name?  Well...I googled my son's name, who I introduced here and here, Caleb Smith.  Guess what...there's a Caleb Smith State Park...on Long Island, New York.  I never expected to go there...but here I am.  Ed took me there on way home from our honeymoon in Maine.

Caleb is involved with developmental disabilities county board.  Most often promotions are down with much higher functioning individuals.  And yes, it could feel hurtful. 

But I attended a bike race he and his pals participated in ~~ held in the parking lot of the county board.  It was a hoot!  They were paired up.  I remember one contestant who said to his female competitor, "You're going down!"  She SMOKED him! (But I digress...)  They were videotaping and because I was a parent there, they asked to interview me with Caleb promoting the county board (this is not the greatest photo).  Totally unexpected!!!

But we'll never see God's gifts if we don't take time to see...

What gifts have you seen today?

Remembering God's Mercies When I Hurt...Part II

I really had no idea how God could break through and help me see His gifts in the pain I spoke about in my last entry...I doubted  it could be possible.  My perspective was dismal.  That was my first wrong move.



This week we had psychosocial intensive time with the two doctors doing their pediatric palliative care fellowships with us over the next 12 nonths.  On Wednesday. I was able to spend four hours with one, talking about my role as a social worker on the team, my training, educating about areas not necessarily covered in or known from medical curriculum.  She knew about my son and that a part of my acquired knowledge was enhanced by the necessity of being informed to advocate for him.  She asked, "What things became available to your son because of this, that he might not have received?"

To answer, I had to pause to think...and blessings came flooding in.  These are only some of the things I shared with her:

• At age 5, I sent Caleb to Vacation Bible School, along with his 8 year old sister, at The Chapel...a mega-church in Akron.  They had a "special needs class" but I wanted Caleb to be in a class with typical children (his severity of autism was still not known).  He was assigned a one-on-one to aide him as he needed.  Fourteen years later, I was at Barnes &  Noble and saw a woman reading a book on Asperger's Syndrome.  I walked past her and said, "That is an excellent resource."  She asked if I worked with children with autism and answered "yes."  She stated her concerns that her adolescent son might have this disorder and she did not know anyone with autism...except a little boy who came to Bible school named Caleb.  My eyes welled with tears and I said, "That was my son."  This was the woman assigned to him and she said with tears, "Ohhhh, he taught us SO much more than we could give to him.  He was such a gift!"

•  In his school, the largest public school district in our county, they were not "used to" having students with autism and most were classified as multi-handicapped placed in classrooms  that were not designed to meet the complex needs of autism.  This was not acceptable and I pushed for the district to create an educational setting for him in the regular school that met his need for environtmental controls, programming and structure.  It was so successful that Caleb was the pioneer of the ACHIEVE classrooms -- 14 of those classrooms were established all over the district by the time he graduated, all because of him.


• By the time Caleb was 9, his need for programming, a controlled environment, and structure, was becoming more than I could provide at home.  He was becoming extremely agitated, aggressive with his frustrations toward property and sometimes me...flailing out of despair rather than targeted purposeful attacks.  Unable to work and receiving no support services, I filed due process against the agency charged with meeting these needs.  I was in a full blown court case.  The stakes were high!  He needed to be in a group home setting in a regular house in a regular neighborhood -- no more than 4 in the home plus trained staff.  I must tell you this was SO counterintuitive as a mother!  I would die on the sword for him if he would have benefited - but I was expending all I had and still he was not content, functioning, or safe.   I so needed a word from God to know I was following His plan.  Faithfully, before I could even ask, he provided!

After church, getting out of the car in the driveway, I noticed a baby bird on the ground.  Looking up, there was a nest of sparrows on the ledge of a window air conditioner.  I got out the ladder, climbed up, and put the baby bird back in the nest.  Immediately, the mother flew and kicked the baby out.  Distressed...I called the metro parks.  The ranger asked if the bird had feathers...which the baby did.  He said, "Then it is most likely time for the bird to go."  I asked, "What about cats?"  The ranger said, "Oh, just because the baby is out of the nest, the mother will still monitor, feed, and protect.  Her work is by no means over."  I said, "So you're saying it's best for nature to take its course."  He said "absolutely."

I hung up the phone, eyes welled with tears.  How could it have been any clearer?  How could I doubt God's Providence?

I recalled what Jesus said in Luke:  Are not five sparrows sold for two pennies?^[a] And  not one of them is forgotten before God. ⁷ Why,  even the hairs of your head are all numbered. Fear not;  you are of more value than many sparrows.

Caleb had a great God and we won the due process.  Now living 15 minutes away...he is content, safe, and functioning at a level beyond my dreams.   This was an unheard accomplishment and became known across Ohio.  A group home was created and structured around his needs, opening opportunities for three others with the same needs yet unserved.

And my reflection and answers on Wednesday to this doctor brought many more blessings and gifts to mind, because of this beautiful soul God chose to bestow to me.  Too many to mention here.   No longer did I see the pain of Sunday...but only the mercies showered on me over the years and God's gift of remembering and reflecting on it with the doctor.

With gratitude,

Remembering God's Mercies While Hurting...Part I

Sunday was devastating!  Church was wonderful...time with my husband out shopping for new polos and oversized T-shirts for my son, Caleb.  Have I told you about him?  That would take a separate blog alone!  But let me try...briefly.



Caleb, named after Caleb of the Bible who chose to stand in the minority and about whom God said, "has a unique spirit and serves me wholeheartedly," is 23 years old, has severe/profound autism, nonverbal, functions at an 18-month level, and lives in a group home with 3 others; it is also staffed 24/7.  He has extroadinarily high  needs of environmental controls, structure, behavioral programming, and predictability in order for him to be safe, content, and functioning...equating to the best life for him as possible.

Very often on Sundays, we get Caleb and take him to his favorite place - McDonald's - and go for rides in the country.  But this past Sunday, going to the group home, I was flooded with pain, hurt, and anger...as so many of the basics with regard to staff providing care responsibilities had been totally neglected and the competence of staff was very questionable.  In truth, except for one staff person where I am sure the issue is competence, the true issue is laziness.



So...how do I find the gifts or look for the mercies of God when I am blinded by righteous indignation that Caleb, dependent for full assistance with everything, is not served with the dignity and the quality of life he is entitled to?  Well, stay tuned, as my next entry will show you how this was possible and how God incredibly reminded me of His providence and gracious mercy in the middle of my hurt.

With gratitude,