Tag Archive | Family

Josiah’s Story about the 4th of July & Val’s Arbutus Beach & Cottage Reminiscences

Source: Josiah’s Story about the 4th of July

Hey, my son Josiah shared some of his insights about the 4th of July & celebrating near our family’s Cottage in Gaylord, Michigan.  There are some lively discussions going on in the Comments Section of his original post, so I wanted to link that post here on my page to find it more easily going forward.

There are some beautiful descriptions of Michigan there from people who have visited over the years!  It’s so great to find even visitors to Michigan have been blessed here!

All of what you see below got generated by looking for appropriate images…which led to reminiscing about life & times Up North…Whew, that was fun but also unexpected!

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This is a picture of Otsego Lake, Gaylord, MI at sunset & that is the very dock used by the street where The Cottage is located & this dock is lovingly maintained by a kind year-round neighbor–image found via a Bing.com image search for “Otsego Lake, Michigan”!

 

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Map of Otsego Lake, Michigan from a Bing.com image search

For the 4th of July, Gaylord usually conducts their Fireworks Show from the Otsego County Park shooting the fireworks off over the Lake.  We get a front row seat to this majestic & patriotic display from “our” beach.  Usually the lake fills with boats so that people watch the show from all angles and situations.  After the County show oftentimes there are many neighbors up & down the beach that put on pretty impressive personal displays, even before such elaborate explosives were available in-state.  Some of the regular out of state visitors also packed quite a bang-up version of personal 4th displays!

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This is similar to our fireworks view, from a Bing.com image search for “Gaylord Michigan fireworks”

From this map of Otsego Lake, you can see that the Lake is roughly 5 miles long and about 1 mile wide at its widest, and many generations of the extended family have taken pride in swimming across the lake–including me!  The Cottage is located along the Northern most side of “The Pointe” that is prominent just North of Otsego Lake State Park.  If you would bisect that Pointe the Northern half would constitute Arbutus Beach, originally set up as a Public Beach (so the Lakefront property owners don’t technically own the Beach between their property & the water).  The Southern half of that Pointe, all the way to Old 27 Highway would be Pine Beach, where Uncle Hugh, Aunt Bernice, & their kids Tom & Karen had cottages.  Pine Beach was set up as Private Beach property so that the lake-front people own the Beach down to the water.  The other owners in Pine Beach only have water access at a couple of access points, somewhat like at the end of the roads.  We actually “slept under the stars” on our cousins’ beach a few times, but that was a more regular occurrence during my Dad’s & Aunt Pat’s Endless Summers of Fun!

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This view is looking South, with The Pointe protruding into the water…from earlier times, like my Dad’s childhood; from a Bing.com image search for “otsego lake, gaylord michigan “

Now Arbutus Beach, because of various lawsuits & disputes has become “The Arbutus Beach Association”.  This makes the Beach rather “semi-private”, whereby in order for people from outside the Association to technically have access to the beach, they need to be guests of Association Members.  We lived at The Cottage during the time the whole lawsuit thing was just getting underway.  In fact, I was operating as an Avon Lady, with a territory that encompassed the entire Arbutus & Pine Beach area.  The Lawsuit was a frequent topic of conversation as I made may way through my Avon Territory and I heard many sad stories from residents.  In some cases friends who had known/interfaced with each other for generations were no longer speaking because they were on opposite sides of the (pointless) disputes.  To my knowledge, some of those historically congenial relationships were permanently destroyed through this lawsuit & subsequent legal maneuvering & fallout.  The only “winners” in all of that were the lawyers…

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This is the sign as you enter Arbutus Beach off Old 27, from a Bing.com image search for “Arbutus Beach, Michigan”

Since my Dad & Aunt Pat, and their cousins Tom & Karen, spent their Summers at Otsego Lake, we get plenty of historical insights & nostalgia about the way things used to be up there.  They traveled around with a bunch of similarly aged kids some of whom lived Up North year round and some of whom, like all of them, were Summer Refugees from Detroit, including a gang of kids at the next most northern train stop, WaWaSoo.  They speak fondly of the days when there were fewer docks & boats on the lake, like two pictures above.  There also were many community events that happened around the lake, at least in the Summer time.  There are many ads in the Gaylord Herald Times Newspapers from like a hundred years ago that show the vibrant community life that seemed to revolve around Otsego Lake back in the day (see some links at the very end of this posting)…The below picture is an historical one of the Resort where historically many community events were held, I believe.  This is now a private residence with a huge dwelling erected on the former community-centric site.

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from a Bing.com image search for “Arbutus Beach, Michigan”

 

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My Great Grandparents’ Cottage & one of their rental cottages in the foreground; from a Bing.com image search for “Arbutus Beach, Michigan”

The above picture shows cottages that are on the street set back from the lake and near the top of the hill.  You can just see the lake in the distance in the middle left of this photo, beyond the car.  This appears to be one of the cottages my great grandparents Rowland Edward & Florabelle Mansell Thompson used to rent to others.  The white cottage in the center of the picture was the cottage my great grandparents moved to Arbutus Beach and was apparently the first cottage there.  The story goes that they bought the lumber company’s manager’s cottage/office? from the South West side of Otsego Lake.  It was pulled by horses over rolling logs across the frozen Lake one winter.

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from a Bing.com image search for “horses pull house across frozen lake”

Though I couldn’t find a picture showing horses pulling a house across a frozen lake, the size of the logs in the above picture and to some degree the time frame may be representative of the process of moving my Great-Grandparents’ First Arbutus Beach Cottage across Otsego Lake.  Also, my Dad’s namesake & grandfather, William Ellsworth Stoddard, found his calling working in lumber, first in Northern Michigan and later managing his boss’ lumber yard in Detroit…WES also had a Gaylord cottage as did several of his children, my Grandpa Elzine Munger Stoddard’s siblings.

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from a Bing.com image search for “horses pull building”

I guess if you add the above two pictures together, divide by two, and pull the building over ice it Might Approximate what allegedly happened with my Great-Grandparents’ First Cottage!  At some time I hope to peruse the historical newspapers from that location & era to see if there might be some mention of this momentous event.  It sounds like the kind of local color piece that would have been so interesting to read from that time period.  Alternatively I may try to see if the Gaylord/Otsego County Historical Society has some record of this event–and hopefully pictures to go with the account!  There’s another couple approximations of that event below…though my great-grandparents’ cottage was bigger (or did it only become bigger later???)…However this was accomplished, it was likely a pretty big deal and involved quite a few people & animals…I would have loved to have heard the tale from my Great Grand Father, as he was a notorious Tall Tale Teller!

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from a Bing.com image search for “horses move building”

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from a Bing.com image search for “horses move building winter”

 

After my Great-Grandparents, Rowland & Florabelle Thompson, died one of their Grandsons, Kenny Moore, who lived in Traverse City, owned their original cottage for many years.  He sold it to his mother’s brother, Thurman Thompson, who lived in California and would occasionally return to Michigan to visit his sisters Vivian Beatrice Thompson Stoddard (my grandmother) & Bernice Genevieve Thompson (Tom & Karen’s mother–she married Hugh Orr Thompson so basically retained her maiden name as a married woman).  After Uncle Thurman died one of his daughters, Mary Louise, inherited the cottage & she eventually moved to Michigan to live there year round.

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from a Bing.com image search for “Fairview Cemetery, Gaylord, Michigan”

By the way  all the names mentioned in the above paragraph, excepting Kenny & Mary, are buried in Fairview Cemetery in Gaylord.  My parents recently bought lots in the vicinity of where my Dad’s first cousin Tom was so lately laid to rest.  Though I hope that it is still many, many years before we need to put that land to use, it is a comfort to know that Mom & Dad will be buried so near so many of the relations on my Dad’s side and so close to our beloved Cottage.  We visited Tom’s grave over Memorial Day and it was a beautiful weather day, though of course bitter sweet in our loss…It was also remarkable the high volume of Military Service represented in that Cemetery, for it appeared that close to half of those graves, going back at least to the Civil War, carried American Flags to honor their Service!

 

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from a Bing.com image search for “Arbutus Beach, Michigan”

This above picture is the cottage that lies between our family Cottage and Otsego Lake–you can see the white “sleeping porch” of Our Cottage behind their side entrance roofing.  When I was a child I used to play with the kids who visited there.  When Michael & I lived at The Cottage in ’93 & ’94 our Pastor’s wife’s sister & brother-in-law lived there with their family.  Later it was bought by a Gaylord native who worked & lived downstate.  It recently changed hands and is now a rental cottage for the new owners.

The swing & platform in the above photo was erected by our neighbors across the street to accommodate the matriarch of that clan when she comes to visit from Florida.  When I was a kid my Grandma & I would sit on the immense log that marked the line between grass & beach to watch sunsets & chat, under where the swing & platform now reside.  Virtually every evening my Dad will sit on that swing, with his sister if she’s Up North, or my Mom, myself, or any of the many grand-kids who might be about to see if there will be yet another spectacular sunset display (& I’ve seen many people up & down Arbutus Beach do this too).

The white cottage on the left is owned by a lovely lady who also spent her growing up Summers at The Lake, like my Dad & Aunt did.  She comes up from Ohio and spends a lot of time Up North throughout the year in her retirement.  To the right of the swing (not in the picture) is a small brown cottage that was owned for many years, possibly generations, by one of the families who generated that dreaded & divisive lawsuit.  They were from California and the man’s brother also had a place further North within the Arbutus Beach community.  The little lake-front gem recently changed hands & is now owned by a couple who live further up the street year round, & maintain that dock in the very top photo above.  They turned that little cozy cottage into a rental place & my parents actually rented it one Summer when so many of our clan were Up North for the 4th for extra sleeping & hangout space–it was quite lovely!

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from a Bing.com image search for “Arbutus Beach, Michigan”

It’s possible that the above picture is from the “Arbutus Beach Highlands”, a small residential community just East of Old 27, across from the Arbutus Beach & Pine Beach neighborhoods & entrance.  Several years ago, Josiah & I along with Brandon & Clarissa spent about 3 weeks at the Cottage in Gaylord.  We walked along the wooded trails of the Highlands, to pick some wild blackberries.  During one of our excursions we ran across some Elk foot/hoof prints.  We would regularly also see Deer prints, but not the animals. Another time, August 2013 to be specific, as Josiah was recuperating following his Liver Transplant in July, he & I had an extended Cottage visit.  On that trip I actually saw a small Red Fox along the Train Tracks where you turn into Arbutus Beach–the only time ever in 50+ years of personal excursions there!  There is so much Natural Beauty abounding in the area.  Sometimes it reminds me of my Grandma, who died in the 1970s, to see the various plants & animals, as we used to walk to the Pointe & some of the wooded pathways together & just talk….She used to be a Teacher, loved kids, and shared her love of God’s world directly with me!!!  These are such treasured memories…

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from a Bing.com image search for “Gaylord, Michigan”

Above is an historical image of the Call of the Wild Museum.  This is a dated though fun family outing place, especially on bad weather days.  My husband often takes our kids there to buy yet another cool knife from their well stocked Gift Shop.  There are many trophy animals on display there including quite a few specimens taken by the legendary hunter, Fred Bear.  He was a dear friend & mentor to hunter, rocker, conservative commentator, and “Motor City Mad Man” Ted Nugent.  I believe Ted has connections to Northern Michigan, but I think more so to the Grayling area, about 1/2 hour South of Gaylord, where he obtained a lot of Fred Bear’s property following Fred’s passing.  I also believe that Fred Bear was a very gifted Archer and even has a particular bow named after him.  In our family my husband brought the Bow Hunting tradition to Michigan when we moved Up North as Newly-Weds.  He used to get various bow-hunting magazines then & I believe Michigan had more bow hunters than any other state!

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from a Bing.com image search for “Gaylord, Michigan”

Gaylord is practically perfectly situated for Four Seasons Living, equidistant between the Equator & the North Pole.  It is known to have the highest snowfall in the Lower Peninsula of Michigan.  The last Winter we lived there, 1996-1997,  I believe it had roughly 220 inches of snow!  Even so, they did a great job of maintaining the road conditions so driving wasn’t too hazardous, relatively–except, of course, during white outs!  There is some picture in the family vault showing The Cottage with snow up to the eaves of the roof, similar to the image below!

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from a Bing.com image search for “Gaylord, Michigan winter”

 

Well I’ll leave this meandering trip down Memory Lane with another stunning Otsego Lake Sunset!  In case you can’t tell, I Love The Cottage, Arbutus Beach, and Gaylord, Michigan & am so thankful that my husband Michael & I began our family there!!!  In fact we may have the only Gaylord born relation within the extended clan, in our firstborn, Nathaniel, who was born in Gaylord, and marked on The Wall at just one day old. We gifted him the nickname of Jackpine Savage because of that Northern Michigan birth!  The Wall would be the Door Jambs at The Cottage between the Dining Room & Living Room.  The Inner-Facing Jamb on the Lake side has my Dad’s Generation & spouses.  The Inner-Facing Jamb on the Garage side has My Generation & spouses.  The Dining Room Facing Jamb on the Lake side has My Kid’s Generation.  Finally, the Dining Room Facing Jamb on the Garage side has my first cousin’s grand-kids–as in my generation’s grand-kids & my dad’s great grand-kids, whenever our side adds to that generation.  No one has been marked on that wall immediately after birth except for Nathaniel…& speaking of marking, the Fourth of July is the traditional time to check everyone’s height (including against existing & ancestral markings)…& this year we get to add in our latest family member, Nathaniel’s New Bride, Tara!

All our years are written with love in the very fibers of The Cottage!

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from a Bing.com image search for “Arbutus Beach, Michigan”

PS If you’d like to see a Newspaper article from back when Michael & I and the Boys lived in Gaylord check it out here, on pages 1, 4, & 5:

http://207.74.70.101:8080/docushare/dsweb/Get/Document-6631/1996-11-07%20Thu%20Building%20Familes.pdf

Page 2 of the below newspaper tells of some of the history of Arbutus Beach and speaks so highly of Otsego Lake as a natural beauty filled resort vacation destination–in 1923!

http://207.74.70.101:8080/docushare/dsweb/Get/Document-8848/1923-07-26%20Thu.pdf

The below link goes to the searchable Newspaper Archive for the Otsego County Library!

http://207.74.70.101:8080/docushare/dsweb/HomePage

 

 

Some Thoughts on “The Price That We Pay as the Keepers of the Memories”

This referenced blog posting is quite insightful and spoke to me as the author articulates an intersection between Family Historian and encounters with pain and death…which, of course, also reminds me of walking that Special Needs Tightrope…These remarks from her blog posting (see below) especially resonated!

“I am my family’s Keeper of Memories.  I pay a price because of that.  But it is a price I would pay again and again because the joy, understanding, and connections that come, outweigh the price every single day…The depth of my pain only exists because of the depth of my love and the joyful memories…”

from https://thegenealogygirl.blog/2017/06/13/the-price-that-we-pay-as-the-keepers-of-the-memories/

Also within her posting she refers to Eternal Families and has a link to share her beliefs.  I did not click that link nor read what she said on that topic, so I am not endorsing her viewpoints, as I don’t know what they are.  From my own Biblical Christian perspective I consider the concept of an “eternal family” to be applicable to the family of God, and those who are in the household of Faith.  There are many biblical passages where family is addressed, especially from the perspective of eternity.

Historically the Jews/Hebrews were/are God’s Chosen People.  Abraham was the Father of Faith, because “he believed God and it was credited unto him as righteousness.”  Later in the New Testament the process of being “grafted into the vine” or “made children of Abraham” is described as a faith journey, beyond descendancy via blood (unless you are referencing the Blood of Christ).

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Bing.com image search for “scripture gentiles grafted in”

Galatians 3:6-8 New International Version (NIV)

So also Abraham “believed God, and it was credited to him as righteousness.”[a]

Understand, then, that those who have faith are children of Abraham.Scripture foresaw that God would justify the Gentiles by faith, and announced the gospel in advance to Abraham: “All nations will be blessed through you.”[b]

Footnotes:

  1. Galatians 3:6 Gen. 15:6
  2. Galatians 3:8 Gen. 12:3; 18:18; 22:18

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide. From BibleGateway.com

 

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from a Bing.com image search for “I am the door”, in context this is Jesus speaking…

 

Jesus describes himself as The Way and The Door.  The only way to the Father is through him.  So, from my understanding, we All have the option of becoming part of the Family of God, of accepting Christ, and then sharing in eternal life.  This assurance of eternity in the Lord’s presence, and being united with loved ones in the faith provides me (and many others) great comfort when those seasons of death and loss arise.  Losing a loved one who is a Believer means only a temporary “See You Later” style of goodbye, not a permanent severing of the connection for those of us who are also in Christ!  As scripture says, “we do not sorrow as those who have no hope”.

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Bing.com Image search for “I am the way”

Here is a lengthy passage of scripture worth pondering…

Romans 11 New International Version (NIV)

The Remnant of Israel

11 I ask then: Did God reject his people? By no means! I am an Israelite myself, a descendant of Abraham, from the tribe of Benjamin.God did not reject his people, whom he foreknew. Don’t you know what Scripture says in the passage about Elijah—how he appealed to God against Israel: “Lord, they have killed your prophets and torn down your altars; I am the only one left, and they are trying to kill me”[a]?And what was God’s answer to him? “I have reserved for myself seven thousand who have not bowed the knee to Baal.”[b] So too, at the present time there is a remnant chosen by grace. And if by grace, then it cannot be based on works; if it were, grace would no longer be grace.

What then? What the people of Israel sought so earnestly they did not obtain. The elect among them did, but the others were hardened, as it is written:

“God gave them a spirit of stupor,
    eyes that could not see
    and ears that could not hear,
to this very day.”[c]

And David says:

“May their table become a snare and a trap,
    a stumbling block and a retribution for them.
10 May their eyes be darkened so they cannot see,
    and their backs be bent forever.”[d]

Ingrafted Branches

11 Again I ask: Did they stumble so as to fall beyond recovery? Not at all!Rather, because of their transgression, salvation has come to the Gentiles to make Israel envious. 12 But if their transgression means riches for the world, and their loss means riches for the Gentiles, how much greater riches will their full inclusion bring!

13 I am talking to you Gentiles. Inasmuch as I am the apostle to the Gentiles, I take pride in my ministry 14 in the hope that I may somehow arouse my own people to envy and save some of them. 15 For if their rejection brought reconciliation to the world, what will their acceptance be but life from the dead? 16 If the part of the dough offered as firstfruitsis holy, then the whole batch is holy; if the root is holy, so are the branches.

17 If some of the branches have been broken off, and you, though a wild olive shoot, have been grafted in among the others and now share in the nourishing sap from the olive root, 18 do not consider yourself to be superior to those other branches. If you do, consider this: You do not support the root, but the root supports you. 19 You will say then, “Branches were broken off so that I could be grafted in.” 20 Granted. But they were broken off because of unbelief, and you stand by faith. Do not be arrogant, but tremble. 21 For if God did not spare the natural branches, he will not spare you either.

22 Consider therefore the kindness and sternness of God: sternness to those who fell, but kindness to you, provided that you continue in his kindness. Otherwise, you also will be cut off. 23 And if they do not persist in unbelief, they will be grafted in, for God is able to graft them in again.24 After all, if you were cut out of an olive tree that is wild by nature, and contrary to nature were grafted into a cultivated olive tree, how much more readily will these, the natural branches, be grafted into their own olive tree!

All Israel Will Be Saved

25 I do not want you to be ignorant of this mystery, brothers and sisters, so that you may not be conceited: Israel has experienced a hardening in part until the full number of the Gentiles has come in, 26 and in this way[e] all Israel will be saved. As it is written:

“The deliverer will come from Zion;
    he will turn godlessness away from Jacob.
27 And this is[f] my covenant with them
    when I take away their sins.”[g]

28 As far as the gospel is concerned, they are enemies for your sake; but as far as election is concerned, they are loved on account of the patriarchs, 29 for God’s gifts and his call are irrevocable. 30 Just as you who were at one time disobedient to God have now received mercy as a result of their disobedience, 31 so they too have now become disobedient in order that they too may now[h] receive mercy as a result of God’s mercy to you. 32 For God has bound everyone over to disobedience so that he may have mercy on them all.

Doxology

33 Oh, the depth of the riches of the wisdom and[i] knowledge of God!
    How unsearchable his judgments,
    and his paths beyond tracing out!
34 “Who has known the mind of the Lord?
    Or who has been his counselor?”[j]
35 “Who has ever given to God,
    that God should repay them?”[k]
36 For from him and through him and for him are all things.
    To him be the glory forever! Amen.

Footnotes:

  1. Romans 11:3 1 Kings 19:10,14
  2. Romans 11:4 1 Kings 19:18
  3. Romans 11:8 Deut. 29:4; Isaiah 29:10
  4. Romans 11:10 Psalm 69:22,23
  5. Romans 11:26 Or and so
  6. Romans 11:27 Or will be
  7. Romans 11:27 Isaiah 59:20,21; 27:9 (see Septuagint); Jer. 31:33,34
  8. Romans 11:31 Some manuscripts do not have now.
  9. Romans 11:33 Or riches and the wisdom and the
  10. Romans 11:34 Isaiah 40:13
  11. Romans 11:35 Job 41:11

New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide. From BibleGateway.com

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Bing.com image search for “grafted into the vine”

Well, thanks for stopping by.  May you find the Lord to be your Savior, Healer, & Lord and may he comfort & sustain you during those seasons of sorrow…and magnify your joy as you Abide in the Vine!

Blessings,

Valerie

thegenealogygirl

PETERSON, Grandma and Grandpa with Kent kids, 1987 My siblings and I with our grandparents – Ronald and Margaret Peterson.  1987

The first time I read The Giver by Lois Lowry, I was in my late teens or early twenties attending college.  I was instantly struck by the lack of true joy that existed in the community because of the absence of historical knowledge and freedom of choice.  The stripping away of freedoms, the complete control of the environment – even the weather itself – eventually led to a deterioration in all that makes us human.  No one chose their own career, spouse, number of children, what to eat.  They took daily “vitamins” to control their sexual urges.  Children were bred and then placed with families.  Members of the community were instructed in every way.  They even lost their ability to see color.

But there was one community member who was the “Keeper of Memories”.  This community elder…

View original post 1,197 more words

Commenting on a Transplant Tale

I’m still coming to grips with a sea of emotions in relation to my son’s Liver Transplant (among many other medical, educational, and interpersonal issues surrounding his life and my intense involvement in caring for his myriad needs) so it is always with a bit of trepidation that I approach other’s stories about the Transplant Journey.  This arena represents a potential emotional hand grenade for me personally & it’s never certain what might cause the pin’s removal leading to potentially devastating internal destruction.

The article below was impacting enough that I just felt compelled to write a comment afterwards, which I wanted to document here and share with my readers and also give myself a known repository of this particular topic in case I want to return to this article again…like for inspiration to gear up for when we finally contact the “Gift of Life” organ registry to attempt a contact with the donor family to express our deepest gratitude.

Such a contact has thus far remained beyond my personal ability to approach except in the most theoretical terms.  It’s hard to know where to begin in expressing the deep gratitude for the life-giving sacrificial gift this other family has provided.  We spent so much time while waiting for the Transplant in prayer for the family and the donor, asking that the Lord would be involved in all their lives, that they would each have a saving knowledge of Him, that there would be such wonderful memories made and no regrets for things left unsaid or undone with the donor.  Contemplating the eventual loss of such a loved one was almost more than I could bear.  What do you say when the Liver Transplant doctor says that your son’s “ideal candidate would be a 12 year old gun shot victim”.  I was more overwhelmed by  the other family’s impending loss than I was by our own upheaval as we awaited this amazing and generous Gift of Life.

Complicating such contemplations is the nature of my son’s complex medical status.  Some staff on the Transplant Team mentioned that in some locales they wouldn’t even offer a transplant to someone as complex as my son (the implication being that his autism or other atypicalities, not necessarily medical in nature, may have lead to a form of disability discrimination against him).  How will this other family feel when they discover that their child’s Liver Recipient is disabled in myriad ways?  What if God has yet to have answered some of the prayers noted above and this family is in a spiritual desert and cannot grasp the value of my son’s life because of his disabilities?  What if learning about who has received their child’s liver they are even more devastated by who/what he is and this adds immeasurably to their grief, pain, and loss?  Should I spearhead the effort to contact them and generate conversations periodically within our family, or at Liver Transplant Clinic Visits (we have another bi-annual one next week), to help prepare us, or should I wait for God to so move on my son, husband, or other family members?  Should I be the one to make the contact or should my son (who has various communication challenges but is incredibly gifted in spiritual insight and compassion) attempt this solo?

Just writing some of these lingering questions down reminds me that this is a process that needs to be bathed in prayer.  I need to reach some place of peace and serenity so that regardless of the donor family’s experience/reception we will feel “persuaded” in our ultimate approach in contacting them.

Any of you reading this that know the Lord please lift us up in prayer as we continue to process and prepare to eventually make contact via Gift of Life and express our Thanksgiving for this family’s Gift of Life to our son!  We don’t want to be among the 9 lepers who didn’t return to thank the Lord for the healing…

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image from bing.com image search

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image from bing.com image search

image from bing.com image search original from blogspot.com

Please consider reading the original story of this group of Transplant Recipients meeting the mother of the Gift of Life donor…what testimonies!

Here is the link to the original article:

https://gma.yahoo.com/face-transplant-organ-recipients-meet-donors-mother-first-181313919.html

Face Transplant and Organ Recipients Meet Donor’s Mother for the First Time (ABC News)

Here are my comments left at the above article’s website:

This story is profoundly moving to me as the mother of a liver transplant recipient. My son was a teenager while going through the transplant process and as a strong Christian was prepared to possibly die if the surgery was unsuccessful. (Before his transplant operation he wanted to tell the surgical team “If I die during the surgery don’t be sad because I’m ready to go home and be with Jesus”–wow). As a young man on the Autism Spectrum he had a hard time understanding that for him to receive the needed whole liver a donor would have to die, so he initially thought he would be murdering someone to get their liver. We had to reassure him that it was ultimately God who would decide who lives and dies and it would all be in His hands…we were not causing the other family’s desperate scenario…

One way my son was comforted in being the recipient of the Gift of Life from someone whose life was cut short was that we agreed before his procedure that if he didn’t survive we would be sure to donate all of his usable organs and tissues so that others would also receive such life-sustaining gifts from him. In fact, while we were waiting for “his” liver we were contacted by the Liver Transplant Team to be prepared as a back-up recipient for another “perfect liver”, a seemingly unprecedented event. At that time another child was higher up on the Transplant List but was so ill that it was possible that they wouldn’t survive the procedure and my son who was to be “waiting on deck” would then get that other liver. This situation was just so unbearable for me personally, thinking that already one family was losing a child for my son to receive a liver was already overwhelming, and it would be incredibly devastating that TWO people would die so that my son would benefit. We called family together and beseeched the Lord in fervent prayer on behalf of this other child…and thankfully they (apparently) survived the surgery and were still doing well more than a year later when my son finally received his transplant. Being involved in a Transplant situation is deeply moving, challenging, and ultimately a lifelong journey of discovery.

Thank the Lord for those brave and generous families who choose to give the Gift of Life during their own season of heartbreaking loss and bereavement!

After checking back at the original article here is a reply to my comment that may have been written by someone who is professionally involved with transplants, and this is such an encouragement to me as it may be representative of other’s perspectives:

  • Avatar
  • these are the stories that make participating in an organ harvest so rewarding. One family’s loss can lead to so many benefits for other families, it is unfathomable. However, the pain, the heartache the loss is so palpable, during our surgical timeout the donor identified…the directed donations are identified as well as research donations. These are huge and incredible gifts

 

 

 

 

Commenting on “Autism it’s Different in Girls” (& so is ADHD)

looking for images with this post…here’s a great Pinterest site

I recently read an intriguing blog post by someone who has autism but chooses to remain Anonymous…hopefully there will be many other nuggets to mine in her blog as well as the interesting comments sections filled with feedback & unique perspectives.

I had wanted (in my comments below) to go into the girls aspect of Autism and mention how there may be a continuum between Autism and ADHD…I’d read a book a few years back that laid out a good scientific case for this insight.  Later, while doing massive amounts of research for Josiah’s special education needs/case I read a number of things that talked about ADHD and how it presents in females…and in particular how there are some mothers of kids with ADHD (and/or autism?) who were never diagnosed themselves but see so many of their “issues” reflected in their kids struggle…apparently to the point that this is a “thing” that gets some degree of recognition in certain circles.

(ironically, while looking for images found these “circles” supporting my views!)

Autism: Different, Not Less:

(from the above Pinterest board…and almost every item ascribed to my son)

Just a few of the many disorders associated with ADHD. Many have similar symptoms and impairments. Getting the correct diagnosis is further confused by the high morbidity rates associated with ADHD. (View only)                                                                                                                                                      More:

the image above is from this pinterest page

I’ve meant to look back on this topic for my own “edification” but have been mightily depleted by the Special Ed case and fallout that it just hasn’t happened yet.  In our family of 6, 4 have officially been diagnosed with ADHD, & the two that haven’t (myself and Brandon, Josiah’s twin brother) exhibit quite a few of the ADHD traits (but perhaps not enough to rise to the clinical level of diagnosis…but then again who’s actually asking to be “officially” labeled)…so we think we probably both have some part of ADHD, at a minimum.  So if the continuum theory holds water, could it be that people that have ADHD are on the (potentially) mild end of the Autism Spectrum?

It’s so hard to really say and it may in large part depend on who you ask and what their personal practice emphasis (if you only have a hammer then everything looks like a nail and all!) might be…It is supported in research, I believe, that many times the parents of kids on the Spectrum have many of those traits themselves.  Certainly when “we” were growing up awareness of Autism “Spectrum” issues was nowhere near the level it is at now.  Also, if it is shown that there is any level of a genetic component to Autism and/or ADHD it would stand to reason that these things would run in families to some degree.

In my own family, from a retrospective perspective there could be arguments made that both my parents have possessed some traits of ADHD, especially when younger.  At least one of my brothers had many such traits when young and his son was also officially diagnosed with ADHD.  My other brother has a couple of kids that seem to have a lot of such traits too.  My husband wasn’t diagnosed with ADHD until adulthood, but it surely negatively impacted his academic trajectory when younger, even though he has learned to “compensate” for the ADHD issues as an adult, as have most of our kids.

Most everyone in my present family has some degree of sensory issue and we all possess varying degrees of emotional vulnerability, but thankfully this trait is at least somewhat intermittent in most of us!  Could these also be evidence of the “Spectrum” Continuum?

The author of the Autism in Girls post speculates on how important it is to find out what is going on with you and to get that diagnostic label (paraphrasing without re-reading her actual words…so I could already be distorting inadvertently her view) and therefore enable some degree of an “Autistic Identity”.  This apparently resonates with a lot of her readers, at least those who have posted comments.  It’s possible that she  draws in these more “anonymously autistic” people by the very nature of the type of blog she writes, as in people who are on the Spectrum, but can “fake it” sufficiently for the outside world to not know they are autistic…

It’s hard for me to relate to the “need” to find an identity, like in Autism.  And frankly I really do not “get” that aspect of our current culture that seems to think one has to discover a “role model” to emulate in order to aspire to things that no one “like me” has ever done before.  This will likely be controversial, and even offensive to some (sorry)–but Obama being “President” of the US should not really make it any more of less easy for any other “black” person to be the President…if the job was about the merits of the individual aspiring to the position (and who could argue that this election year!) and not about someone’s “identity”…and if he had actually obtained such a job based on his own merits (which he manifestly did Not do based on his abysmally thin resume)–no “white” man with his background, (lack of) accomplishments, known dangerous associates, and incredibly thin skin would have ever gotten near to the place of getting his finger on “the button”…but I digress…

Anyway, I don’t fully get why so many people feel the need to find such a label and thereby get some type of identity by identifying with a group.  Obviously, for anyone who knows me very well, I have spent much of my life in isolation, going against the flow, and refusing to join into whatever “group” (like Groucho Marx I wouldn’t be a member of any group that would have me!)…so the herd mentality is far from appealing to me personally.

I do, however, take a measure of identity from my personal faith…as in I’ve considered myself a strong Christian for the bulk of my life and that remains my primary identity…but I am much more likely to think of myself as a person (even as an intellect) than as a woman, wife, mother, daughter, sister, friend, employee, neighbor, parishioner, or any other ready label, per se…

I will acknowledge, however, when it come to my son with special needs, Josiah, when he was first given the PDD-NOS (atypical autism) label it lead to huge sighs of relief for myself and my husband.  That was because we were dealing with so many issues back then that Autism at least made a degree of sense and it was able to take a number of his significant behavioral anomalies under its umbrella.  It is also true now that Josiah appears to think of himself as “autistic” and he uses that label, perhaps as a shorthand code, as a blanket explanation for various aspects of his quirkiness, at least that’s how it appears to me (I am in no way pretending to speak For him)…

I have spent so much of my life seemingly on the outside of whatever the group thinks it is or what it does that it’s actually harder for me to acquiesce to the “herd mentality”, even in a church setting where people are looking to foster “unity”.  This may be a holdover of the “rugged individualism” of the traditional American ideal that I do internalize to some degree, my own individual personality & intellectual makeup that always goes into suspect analysis mode whenever everyone around me jumps on some bandwagon (or follows some pied piper toward yet another cliff), or even can be an outgrowth of having lived virtually my entire life “counter culture” (especially now that Constitutionally Conservative Christian is virtually a pariah position in this formerly free land of ours).  Perhaps being an “outsider” is enough of an identity that it’s not necessary for me personally to seek other labeling for myself.

As far as role models go, though, as a Christian the Only real role model would be Jesus Christ…and that represents a role that none of us could ever live up to!

Philippians 3:14King James Version (KJV)

14 I press toward the mark for the prize of the high calling of God in Christ Jesus.

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

(image from searching Google images for the scripture…may have been a youtube screen grab..but here is the link for the image…well it wouldn’t paste the link just another image)

So, thanks for listening in…and check out the original post below that my comment following pertains to…and let’s support those amongst us who are learning to speak up and speak out and encourage them to share their hearts with all who might choose to listen and care and handle our human frailties with tenderness and truth…

Blessings,

Valerie

Autism—It’s Different in Girls

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My perspective on this is a bit different in that I am a Parent of someone on the Spectrum who was diagnosed as “PDD-NOS” (Pervasive Developmental Disorder Not Otherwise Specified, aka “atypical autism”) and we got such a “label” for our son when he was still a preschooler. He also had many other issues that were primarily medical in nature and during key points of his life these medical needs really took preeminence (2 open heart surgeries, brain tumor, liver transplant, etc).

Our seemingly biggest challenge overall was in getting the educational system to even pretend to address his Actual Needs. We had years of frustration where they absolutely refused to acknowledge his autism diagnosis (in fact they never officially Did recognize that he was on the Spectrum, though his last Special Ed Case Manager did admit the obviousness of his Autism in private conversations with me). The school system was extremely derelict in its legally mandated duties to my son and we dealt with significant frustrations in this arena for the duration of his public schooling, K-12 (ironically special ed preschool did a Great Job with him, so our frustration was mightily increased by the torments that followed).

One extremely important aspect of special education law (in the US) involves Transition Planning & Services that are required to begin no later than the year the student is to turn 16. These services are to be tailored to the individual needs of the student and should be designed to facilitate their Transition from public school to Independent Living, Post-Secondary Education, and Employment. The ideals of this approach are laid out in detail in US law (IDEA, the Individuals with Disabilities Education Act & its later “improvement”), but our experience, and likely that of many others, reveals how far short of the legal mandates/standard things are…let alone compared to what should be “ideal” (as in identifying and addressing All areas of known or suspected disability, regardless of diagnostic “labeling”)…My son was “graduated” from high school not even possessing 3rd grade math skills and his now denied Michigan’s through age 26 special education because he “graduated”. I have a cousin with two autistic sons in Arkansas and her older son also “graduated” but struggled so significantly in college that she got him tested and discovered that his reading was only at grade school level even though he had a “diploma”. I don’t know how much she fought for him educationally but I know to what incredible lengths I went to over the years all to virtually no avail…

My son’s Primary Care Doctor, who has a practice devoted to complex special needs kids & families, including a significant cohort on the Autism Spectrum shared a chilling perspective. She said that the “high-functioning” autistic kids, like my son is now (he’s been significantly lower functioning when younger) are not coming close to having their needs met here in Michigan. If they are high enough functioning to be included in regular academic settings then often their “independent living” or functional “life skills” needs often go unaddressed. Once they get out of high school they discover that “the adult services industry” is woefully inadequately prepared to address so many of their needs. Also, because the many systems are so poorly managed and financially irresponsible and/or overburdened many times kids with significant needs do not come close to getting their needs met at any point…

Given that the “higher functioning” autistic kids are probably the ones most likely to be able to “handle it” to some degree in the regular/normal/neuro-typical world it would certainly seem in society’s best interest to help give them the tools and support necessary to foster their highest level of independence while young and thereby ensure a likely increasing percentage of such kids will grow into (nearly) independent adults. This would mean the possibility of significant resource allocation during the earlier years developmentally but should hopefully result in many more of these kids not needing nearly so much public support as they likely would otherwise had such intervention not have been provided. The arguments for early and intensive intervention for Autistic Spectrum kids have surely now made that perspective widely accepted and hopefully there has been sufficient time for data gathering to bolster this view “scientifically”.

In our family’s case, we spent many years and uncountable mental, emotional, spiritual, and financial capital attempting to get our local school system to DO THEIR LEGALLY MANDATED JOB…and these requests were based on data, diagnoses, and clear evidence of myriad needs (many in keeping with autism spectrum issues)…however the real bottom line was that my son got virtually Only what the school felt like offering whether it directly addressed his needs or not. And since they absolutely refused to acknowledge or address his Autism Spectrum issues (which were known as early as 2000 and had written behavioral pediatrician’s orders) he was significantly negatively impacted by not having received these necessary (and technically IDEA mandated) services.

The cost to our family (we had four kids within four years) was/is truly incalculable. I’m not “blaming” the school for all the issues, but had they done their job there are so many things that would have gone differently. For instance my son required significant therapeutic intervention, especially when he was younger, so we would take him to PT (Physical Therapy), OT (Occupational Therapy), SLT (Speech & Language Therapy), Sensory Integration Therapy, Music Therapy (which I tried for years to get the school to provide to assist in re-mediating his Severe Learning Disability in Math), Art Therapy, Psychological Therapy, Visual Therapy, etc…We spent so much of what should have been family free time shuffling him to and from these visits and when I finally stepped back from it one year due to personal overload and burnout basically watched him deteriorate before my eyes. He should have had year round intensive intervention provided by the school but they absolutely refused to analyze or address his very real needs and declines. I actually ended up dragging all my kids to random Vacation Bible Schools over a few consecutive summers just to try to give my Special Needs Son some degree of educational structure (and all the other kids really came to resent this as they got to attend these nearby VBS’s along with their brother). There were a few years when being out of school got so upsetting for my son that he lost his toileting skills…but they immediately returned when school began. This level of distress did not concern school staff at all but it caused significant suffering for my son…and the rest of us.

Well, this obviously went on Way Longer than I intended it to. I’m so glad you are putting your voice out there and speaking up on behalf of yourself and others who may not choose to speak but whose experiences and perspectives resonate with yours. My son has come such a long way from those virtually non-verbal and overwhelming sensory distress days to having discovered himself and continuing to refine his own unique voice. Although “movie quoting” and verbatim dialogue still punctuate much of his communication he can at least now speak as himself so much more freely now than ever before.

Loving someone with autism and living with someone on the Spectrum can certainly be a challenge (and I won’t minimize the major hardships of our personal journey historically &/or presently) but it also presents a tremendous amount of joy as well. Our “special” son is really the heart of our family in so many ways. He is a constant source of entertainment and his humor is so random that it continues to surprise and amaze us all, which is a huge blessing and counterpoint to the stressors. However he also represents a personal bridge between this world and the Kingdom of God (he is a very strong & outspoken Christian)…he has seen the Face of God while undergoing his Liver Transplant and (similarly to his dad) can have a nearly conversational relationship with the Lord. I really believe that his “autism” facilitates this transparency. Just as he doesn’t know how to put a “mask” on in his human relationships, he is virtually incapable of having a barrier between himself and God. Witnessing his Christian Walk is both humbling & encouraging for those who live with him. If he struggles to talk with us earthlings there is no communication barrier with his Heavenly Father…and that is a gift that no “labeling” nor lack of supports could ever diminish!

Blessings, thanks for all you shared, and thanks for letting me “wax eloquent” too here.

Best Regards, Valerie Curren

PS, I wrote more thoughts on your article at my blog here…I’d love to hear back from you on that, if you might be interested…

https://specialconnections.wordpress.com/2016/10/11/commenting-on-autism-its-different-in-girls-so-is-adhd/

this provocative image could lead us to consider these topics further…hmm; from:

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd

Commenting on a Genealogical Black Sheep Article

Here is yet another comment I’ve historically written to the DNA Explained blog and authoress, Roberta Estes.  It was in response to an article she wrote up about her own “black sheep” ancestor.  Such more notorious people can really make genealogical research exciting (and at times “shocking”)…These “colorful” relations can really lead to a convolutedly branched family tree…depending on the arena of their outrageous endeavors!  Below is the original article to which I replied:

Your rogue ancestor reminds me a bit of my husband’s great grandfather who was living with another woman and having several children with her while apparently still married to his (first?) son’s mother. That woman listed herself as a “widow” to him during his lifetime, perhaps to try to avoid the shame. Besides the infidelity and possible bigamy there were several incidents of apparent criminal behavior by the son and grandson. My research is so disorganized currently that I can’t put my hands on the supporting documentation easily, but the newspapers in the DC area of the time carried some very colorful tales about this group: a shooting (accidental?) by a father of his son (in the groin) and of an uncle of a nephew (in the ear), theft, con-man schemes involving jewelry & call girls, various “alias” names to disguise identity, and incarceration of a minor for unknown crimes but a pardon by the Governor of Maryland….black sheep are so interesting to follow/uproot on the family history tree!

Special Needs & Church

I just read the post at the below site about the challenges one family faced surrounding church attendance…that seemed to be generated, in particular, by one church staff person being inflexible and unaccepting of their child’s unique quirkiness…

http://supportforspecialneeds.com/2016/02/10/when-church-special-needs-do-no-mix/  “…we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that …We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.”

I agree with the exhaustion statement above .  Families facing complex special needs scenarios can be overwhelmed and even burned out because of the day-in and day-out battles they face on multiple fronts.  Church should (theoretically) be a place where we can go and be accepted “warts and all” and where our children can be especially embraced in spite of, or even because of, their differences.

But, oftentimes church can be a battleground.  There are a couple of posts at SpecialNeedsParenting.net that outline a pretty ideal scenario of love and acceptance of a very unique autistic young man in a church.  Please see this story at these two links:  http://specialneedsparenting.net/autism-church/  http://specialneedsparenting.net/autism-church-its-a-good-thing-part-ii/

Our family’s experience has been a bit more uneven than this.  When our son with special needs was born we lived in Northern Michigan, about 3 1/2 hours North of the birth hospital.  At that time I was staying with my parents in Metro Detroit with our just 2 year old son after having seen a high risk pregnancy doctor and being told of my twin pregnancy “we’ve got to get the little guy out before he dies” on a Friday, and being scheduled for a premature delivery on the Monday following.  Both twins were needing to stay in the NICU before coming home.  The basically “normal” baby (Brandon) came “home” (to my parents’ home) after 10 days in the NICU, but Josiah remained there for about 2 months before being transferred to the University of Michigan Hospital for Open Heart surgery.

My husband and I had been quite involved in our Northern Michigan church before becoming parents.  We had been the youth leaders/pastors for a period of time and also both very active in the worship ministry.  When it became known that Josiah would be having heart surgery both pastors traveled South to visit with him (and me) in his birth hospital.  It was a fairly awkward visit as the senior pastor was visibly uncomfortable in the presence of this very small (about 4 pounds then, having been 2# 6oz at birth, a condition called IUGR–Intra-Uterine Growth Retardation, very small for gestational age) and sickly premature infant.  They did ask how they could help our family and offered to stay with us at U of M during Josiah’s upcoming heart surgery, but I did not feel “safe” in their presence so declined this “service”.  I suggested that they could have some families in the church either provide meals for my husband, or invite him over for a meal as he was living alone (in order to work) and coming downstate to be with his family each weekend.  This resulted in one dinner invitation for my husband during that extended time of extreme stress and isolation.

Years later we ended up discussing that early time and how uncomfortable we were with how the senior pastor, in particular, handled us and our situation.  There was something about things that never really sat right, though it was hard to pinpoint.  Our friends had also been attending our church during that time and were quite close with my husband in particular (he and our oldest son had both participated in their wedding).  They provided some needed perspective about how our “heart surgery baby” was being handled by our then pastor at that time.  According to them he would brag about the small sick baby from his congregation, kind of like a feather in his cap about how he/the church were doing so much to “meet our needs”.  Apart from that hospital visit (which was a significant drive and Not requested by us) and that one meal for my husband there was nothing done for us by our church…including during multiple surgeries and intensive home interventions from government program workers for about the next two years before we left the area.  I forgot, the Senior Pastor did visit me and the boys in our home at one point, I’m not sure when, and asked what I needed.  When I said that I could really use a friend he exclaimed (in seeming outrage) “I can’t get you friends!”, which wasn’t what I was actually saying.  Needless to say, talking to pastors about “issues” has never been very high on my priority list (and perhaps I’m too picky in this arena given my background in Christian Counseling)…

In the early days after the twins’ birth, when we were finally all back in our own home I heard a very moving story on the local Christian Radio Station.  There was a family that had given birth to a very medically fragile child and they had been surrounded by love and support from their natural and local church family.  This involvement rose to the level of round the clock shifts to provide extra assistance during the early weeks, and perhaps even months, of intensive neediness.  What was portrayed seemed so ideal and so far apart from our own experience that I was very saddened at that time by how unsupported we ended up feeling from our local church family (our natural family being hundreds of miles away and helping us with housing/babysitting during medically based visits).

Because of our son’s complex medical needs, which were all being treated and followed at U of M, a good 3 hours South of our then home, we began to explore the possibility of moving closer to this needed ongoing medical care.  Ultimately my husband went through a job change that allowed him to work downstate and live in my parents’ home for about a year, commuting to our home for the weekends, while I stayed North with our three sons so that we could sell our home ourselves (For Sale By Owner).  The boys and I would head South with their dad for any weeks where Josiah had medical appointments and return home the following weekend.  This situation was extremely stressful for all involved and for the most part we had no support from our local church.  I lived in extreme isolation during the weekdays, rarely leaving the house because of Josiah’s fragility and risk of infection, etc.  In fact I was shocked to find out that the woman I considered my closest friend from that church had been attending a weekly bible study a few houses from my own, but she had never stopped in to see me or the kids nor to check on why we attended church so sporadically, if at all.  That lack of attendance was due to the fact that Josiah contracted life-threatening RSV (Respiratory Synsichial Virus) and required lengthy hospitalizations for it twice in the first year of life–basically taking him out in public was risking his life.

When we finally accomplished moving the entire family downstate and got situated in our “new” home, we began searching for another church home.  As the twins were now toddlers (2), our oldest son 4, and our daughter an infant this was an extremely challenging process.  If we found a church that had sufficient nursery capacity they rarely, if ever, were able to handle the magnitude of Josiah’s behavioral or emotional needs for the duration of a worship service and either I or my husband would need to intervene with him, sometimes multiple times in one service (this was before we knew about “autism”, but even after such a diagnosis we had minimal autism treatment so it was more just an “ah ha” explanation for us about what was going on with him).  This really meant very sporadic church attendance overall as it was very difficult to “get anything” out of a service being so distracted by Josiah’s needs.  The magnitude of those needs was also a major reason why we sought the support and sustenance of a local church “family”, as a way to cope with the massive pressures of the special needs family’s life.

It was a number of years before we began attending our present church and we ultimately went there because it had a bit of a “comfortable old shoe” component to its ambiance for us.  During Clarissa’s infancy I had attended a MOPS (Mothers of Preschoolers) program at that particular church and felt that it had a pretty welcoming atmosphere.  Because of that positive MOPS experience, and because the church was pretty local and seemed relatively welcoming we eventually began attending more and more frequently.

Since our children were then mostly in their elementary years we were no longer battling the nursery situation.  Also, this church has a fairly limited “Sunday School” type programming, so we often just kept Josiah with us during the service in order to minimize some of the upheaval.  Josiah has always had a true worshiper’s heart for the Lord!  This means that either in church or during times of spiritual meaningfulness (family devotions and/or communion, etc.) he was more attentive and/or more behaviorally appropriate than he might otherwise typically have been.  That meant that at least sometimes he was appropriate to attend the kid’s programming, and having him included in some musical kids productions was a definite blessing.

Even though our current church home is relatively “special” friendly there are still glaring times of insensitivity that can be on display.  A couple years back our daughter was nearly moved to tears while at a youth event when she observed how her special brother was not at all appropriately included in a physical activity.  His processing challenges and  poor coordination meant that he was rather bowled over and disregarded during a sporting event.  Clarissa was very sad that the attending leaders were either unaware or unconcerned about how Josiah (and his sister) was being hurt by not being appropriately accommodated.  It would be great if either of them would have been assertive enough to speak up and seek help during such difficult experiences, but that is unlikely to happen.  That means that people in leadership need to develop increased observational skills and sensitivity and perhaps creativity in how they reach out to people and families that are “different” and who may need extra help, patience, or understanding…

Being able to reach out and embrace kids/adults with special needs and their families really should become a primary mission of virtually any local church.  The uniqueness of the needs represented would mean that staff and parishioners would need to be especially sensitive to where a given family was in multiple domains.  There could be great opportunities to reach out in service to such families who often face more than their “fair share” of crises and upheavals.  Having a ministry targeting special needs families could mean a much more vibrant style of community outreach and Christian witness.  The love and compassion, gentleness and patience, joy and peace, kindness and self-control that Should accompany the Christian life would be the ideal characteristics for people reaching out to special families to possess.  Wouldn’t it be wonderful if the Lord would lay such a burden on the hearts of so many in ministry?

Until such a time as that ideal scenario presents itself, those of us who know the Lord need to allow Him to move in and through us in developing eyes, ears, and hearts of compassion toward one another…and especially to people and families that are often broken and hurting.  And if you come from a special needs family it is almost certain that you bear burdens and wounds and need the love and tender mercy of the Lord poured out into your life.  The author referenced at the beginning of this post took a long hiatus from church and didn’t really raise her kids much in the faith.  Although she herself is attempting a return to church now, it is unclear what spiritual relationship her kids have–and those losses are at least partially attributable to an incredibly insensitive church leader who by her demeanor may have inflicted permanent damage on a vulnerable family…How Tragic!

May the Lord give His wisdom to His people that they/we as individuals and as local church bodies may open their/our eyes to the many needs around them/us represented by special needs families.  May they/we choose to see and to give of themselves/ourselves in time, prayer, emotional support, or tangible means of assistance and so reach out to so many of the vulnerable, lonely, hurting, and fragile within our communities.  Consider the Randy Stonehill song () below which beautifully portrays the need for each of us to be Christ’s hands and feet to a hurting world…Blessings to All, Valerie

RANDY STONEHILL
Who Will Save The Children Lyrics

Cry for all the innocent ones
Born into a world that’s lost its heart
For those who never learn to dream
Because their hope is crushed before it can start
And we shake our fists at the air
And say “If God is love, how can this be fair?”

But we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

We count our blessings one by one
Yet we have forgotten how to give
It seems that we don’t want to face
All the hungry and homeless who struggle to live
But heaven is watching tonight
Tugging at our hearts to do what’s right

And we are his hands, we are his voice
We are the ones who must make the choice
And if it isn’t now, tell me when?
If it isn’t you, then tell me who
Will save the children?
Who will save the children?

As we observe then through our T.V. screens
They seem so distant and unreal
But they bleed like we bleed
And they feel what we feel

Oh, save the children
Save the children
Save the children

Now we decide that nothing can change
And throw up our hands in numb despair
And we lose a piece of our souls
By teaching ourselves just how not to care
But Christ would have gone to the cross
Just to save one child from being lost

And we are his hands, we are his voice
We are the ones who must make the choice
And it must be now
There’s no time to waste
it must be you
No one can take your place
Can’t you see that only we
Can save the children
Save the children
Save the children
Please, save the children
Will save the children?
Who will save the children?

Lyrics taken from:   http://www.elyrics.net/read/r/randy-stonehill-lyrics/who-will-save-the-children-lyrics.html

 

Rarity & Comfort

Here’s a snippet from an article from Special Needs Parenting, original is at this link:
http://specialneedsparenting.net/not-as-rare-as-you-think-you-are/I heart someone who is rare 2016

“YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

Raising a child with a chronic illness, disability or special need can often be a bone-achingly isolating existence.  The stares, exclusion, judgment, and hurtful comments can sometimes make caregivers like us feel like we are serving time in a penal colony, far from the comfortable normalcy of the average family. Without realizing it, well-meaning family and friends can push us further to the margins with their suggestions, pointers, and unwelcome recommendations.  (Thank GOD for places like Not Alone!)

Add to this isolation a rare diagnosis, and parents have an entirely different cluster of challenges.  In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.  For those caring for a child who has a diagnosis in this category, the stress only increases as…

  • Getting to that proper diagnosis can often be a huge struggle.
  • Cures are non-existent.
  • Treatments, if there are any, are extremely expensive.
  • Information on the condition can be difficult to find.
  • Practitioners specializing in the diagnosis are only available at major medical centers, if at all.
  • Schools are completely at a loss when it comes to comprehensive understanding of the diagnosis.
  • Pity or confusion from others seems to multiply exponentially when they learn a child has a rare disorder.

This cluster of added challenges can make us feel unenviably rare indeed.  We can buy into the lie that no one in the world understands what we are going through.  Nothing could be further from the truth!

YOU ARE NOT AS RARE AS YOU THINK YOU ARE!

The Old Testament prophet, Elijah, bought into a similar fallacy after he had confronted the prophets of Asherah and Baal.  In 1 Kings 19, Elijah flees for his life, whining to God, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” (1 Kings 19:10, NIV, emphasis mine)  Later in the conversation, the Lord reveals to Elijah that he is certainly NOT the only prophet left.  He reassures Elijah and directs him how and where to unite with others who share his commitment to the Lord.

God has done nothing less amazing to refute the false, isolating beliefs of families in this day and age.”

Not As Rare As You Think You Are was first posted on February 17, 2016 at 12:00 am.
©2014 “Special Needs Parenting”.

Author Bio:
Barbara Dittrich
Executive Director at Snappin’ Ministries
Mother of 3 children, all of whom have a variety of diagnoses, Barbara is the foundress of Snappin’ Ministries (www.snappin.org) and currently serves as Executive Director. Besides being passionate about sharing the hope of Christ with parents, Barb is active in legislative advocacy, and serves as a partner and ambassador for rare disease.

I don’t actually know about the rarity of the diseases/diagnoses we’ve faced with our son.  When he had the brain tumor the type of tumor he had was rare for a male and for someone his age.  Many of his vascular atypicalities are extremely unique–does that equal rare?  Prior to the Liver Transplant the underlying liver condition, Congenital Absence of the Portal Vein, was a very rare condition.  If memory serves I looked this condition up at the hospital, accessing medical literature via computer not usually accessible to me seemed to show that this condition has only been written up a handful of times, I believe less than 20 times, over many years after having been first discovered during an autopsy in the 1700s.

When my son was an infant and still in the NICU I spent significant time accessing that hospital’s medical library looking for info on his then known conditions.  I couldn’t find material (granted I didn’t ask for assistance and it could be out there) that linked more than a couple of his conditions.

We’ve undergone numerous rounds of genetic testing, including “exome” testing where Josiah’s DNA was compared to immediate family members, in the search for the elusive, yet presumed, genetic syndrome he “has”…All syndromes suspected have been found to be negative.  At special needs events we’ve had conversations with others who have suggested the possible “condition” present, but subsequent testing has said No.  If he Does have a genetic syndrome, it is either so rare or such an atypical presentation of a more common condition that it seems unlikely to ever be identified, or apparently treated…

Whether or not my son’s conditions are “rare” or not…the sheer volume of conditions and the existence of so many issues overlapping and interweaving in his life makes it “seem” rare in totality.  I would Love to Hear from Anyone out there who has dealt with ADHD  AND Autism AND Congenital Heart AND Liver issues (& Transplant) AND Brain Tumor AND Learning Disabilities AND High Blood Pressure AND Sleep Disorders AND Neurological & Sensory Impairments AND Growth Hormone Deficiency AND Hernias AND RSV AND Ear Issues AND Eye Issues AND Depression AND Anxiety AND Obsessive Compulsive Disorder AND Asthma AND Prematurity AND Twinsanity AND IUGR AND you get the idea…

Here is a link to the blog from the group affiliated with the above quoted article, with apparently daily postings from a Christian perspective:
http://www.comfortinthemidstofchaos.com/

I even find the name of their blog comforting, for chaos is something we’ve come to live with, endure, and eventually embrace…it is a way of life for families dealing with Special Needs. I used to think the chaos was more a function of so many kids so close together and the energy & upheaval that accompanies that family composition. When one of my brothers started having a lot of kids I used that word “chaos” in describing family life implying that he might be facing that scenario too. It came across as offensive to him, perhaps his household wasn’t chaotic like ours was…or perhaps his wife kept the chaos enough under control that it didn’t intrude on his personal space the way our chaos intruded on my space…perhaps he didn’t like the nomenclature and found that offensive, or perhaps he had a tad bit of denial of their actual status.

Any way, I hope to partake of the offerings at the above blog on occasion. Being people of Christian faith, yet also facing the Fact of the Chaos that seems ubiquitous with Special Needs living and parenting is an important reality check. Just like an alcoholic will never approach AA nor get help for their alcoholism if they never admit/acknowledge that they Are an alcoholic, so, as a parent facing complex special needs scenarios (both present & historical) it is difficult to receive help for the “chaoticness” of life if one doesn’t first acknowledge that it exists.

Sometimes I have found the “advice” of people of faith to be frustrating in the extreme. Some seem to focus only on the God’s Blessing side of life, virtually supplying a ready-made guilt trip if you are experiencing more of an “in this world you will have tribulation” type of an existence. It’s not that God isn’t meeting your needs or supplying blessings and sustenance in the midst of the storm(s). However pretending that the hard road is really the easy road doesn’t offer much comfort to someone on a seemingly hard road pathway–a journey not necessarily of their choosing nor the result of sinful behavior or bad choices. When we, as believers, Must walk that difficult path (and of course the Lord is the One who supplies All that we need to endure and hopefully overcome) I for one do not receive much/any comfort from others who minimize or disregard the pain, hardship, and suffering that are constant companions for such a trek; in fact I do Plenty of my own minimizing (when Monday’s Doctor said something like “you have been through a lot” I looked at her funny because I really have no frame of reference about all of this and feel guilty for “whining” if I try to offload/explain some of where I “feel” like I am)…

Well, all that to say I have hopes to encounter a measure of comfort and support from the above blog. Perhaps it’s because I’ve been a lifelong reader, but sometimes there can be much gained from the written word of others who have also traveled a challenging path. Years ago I read a Reader’s Digest article about a man who survived a small plane crash in the frozen wilderness and hiked out to get help for the even more severely injured other survivor. This hiker had no appropriate clothing or supplies. He also had a broken ankle. His hardships and perseverance were a great inspiration to me. Having had a sprained ankle a few times and basically crying when a bed sheet touched it I cannot even imagine the level of pain he endured in his quest for survival…

Anyway, speaking from within the current emotional pain of the fallout of further disappointments and systemic “abuses” recently endured, I am hopeful to encounter testimonies via the above blog that will be an encouragement and inspiration.

We are not alone, regardless of what it may “feel” like. The Lord has promised “I will never leave or forsake you” and that is a promise worth clinging to! Especially during those seasons when “chaoticness” overwhelms…