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Feelings

This a beautiful post that seems to encapsulate some aspects of the autism experience from within. I’m so thankful that some people will choose to open up & share their unique insights from their personal perspective. I hope to get my autistic son to read the original post some time & see if he actually relates to this description of emotional/sensory overload.

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Here’s what I shared with the author:

valeriecurren
Beautifully & eloquently stated. This helps me understand my autistic son just a little bit better. Thank you for sharing this!

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Please read the original post, I will revisit it too, which is why it’s posted to my blog, for it is precious & in her own words!  Blessings, Valerie

autismthoughts

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it…

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Celebrating the Life of The Legal Genealogist’s Nephew Tim

from the posting below “That’s Tim there in this family photo from a reunion in 2002. The one on the left, in the wheelchair.”

http://www.legalgenealogist.com/2017/06/24/saying-goodbye-2/

I was just moved to tears by this family’s loss and the beautiful tribute this Aunt wrote about her nephew Tim.  She shared some of the things that made Tim unique & special…and none of them was about Special Needs!  May we all be remembered thusly by those we eventually leave behind, clinging to treasured memories & love…

Please lift up this family in prayer as they lay Tim to rest…may they all find comfort.

Blessings,

Valerie

Please visit the original post above to read about Tim as his Aunt has shared some of his legacy with us all…“We saw the shining spirit that was Tim.”

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from a bing.com image search for “sorrow not as those who have no hope”

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I shared this with The Legal Genealogist:

Your comment is awaiting moderation.

Thank you so much for sharing this tribute to your nephew. So sorry for your loss, but what a beautiful way to honor who he was. I have a special needs son who sometimes is only seen as Autistic…but, as you’ve so lovingly shown about Tim, is so much more than a label…or a chair.

May the Lord bless you and your extended family as you celebrate Tim’s life, mourn his loss, and share his legacy.

Blessings, Valerie Curren

PS I shared your post with my readers here:
https://specialconnections.wordpress.com/2017/06/25/celebrating-the-life-of-the-legal-genealogists-nephew-tim/

Shorthand Hospital Run…

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So my son, Josiah, and I returned to the University of Michigan Hospital today because I’d rescheduled his MRI of the head (aka Brain Scan) from yesterday afternoon to this morning, so he could participate in a special needs social event last night.  We rarely have back to back hospital runs so this was kind of “fun”…

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from a Bing.com image search for “U of M Hospital”

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  • Up late, running late, getting to the hospital “on time” cause we left a cushion!
  • No traffic “cops” at the parking structure entrance like yesterday (when a screaming motorist & screaming parking lot “enforcement” personnel made me think someone just might pull a weapon–it’s Detroit area, after-all–& for once Josiah decided to Not escalate an already tense situation!)
  • Doing loop-de-loops in the parking structure looking for a space…and Josiah feels some dizziness coming on (he’d already complained how he got dizzy at his recent Liver MRI & was concerned about dizziness from the procedure)
  • Offering to drop J off near the entrance we might use (depending on what level I actually get to park on) & he finally takes me up on the offer–so hoping he actually follows instructions & waits in the right place–praying all the way…
  • making our way through the various “buildings” (interconnected) of the hospital complex to the appropriate elevators & descending to sub-basement B-2
  • walking the halls to the Adult MRI department (his Liver MRI was in the Mott Pediatric part of the hospital the other day) with Josiah getting spooked (it looks older & less kid friendly here) and saying that it looks like we’re going to the morgue (where we’ve never been but maybe he has in video games or shows?)
  • filling out the “abbreviated” pre-procedure forms (3 pages)–thankfully they don’t ask about All Organ Systems, like the pre-op paperwork, for that level of recall is really exhausting
  • Josiah wants to fill out his own forms (which is great)–I finish page one & give him page 2 and he gets stumped right out of the gate when descriptions of prior heart surgeries/devices are needed–sigh–I want to support his independence, but I know these things better, can write in an adult hand (his printing is large & grade-schoolish), and he’s already said he doesn’t want talking so wouldn’t appreciate the amount of verbiage needed to “coach” him here…I complete p 2 & he refuses p 3…
  • no problems in changing, getting a locker (I keep the key for him), nor getting an IV–I’m not allowed back with him (he’d requested me to accompany him at the Liver MRI) and he actually goes along with the staff without issue!
  • I remind the technician that he got dizzy when they moved him in and out of the other MRI machine & she says she can accommodate him there…since he didn’t complain of dizziness afterward it appeared like things went OK!
  • sitting in the waiting room working on a book (I finished), a sudoku puzzle, and a word search…then perusing a number of photo based magazines where I’m bombarded with guilt-trips of the leftist agenda ad nauseum–sigh…no napping…a TV blasts out of sight while trying to sleep & I recognize Chip & Joanna Gaine’s voices from the Fixer Upper TV show…but too tired to attempt to watch this
  • he’s done & we depart without issues & decide to swing by the “interfaith” chapel that’s just outside the elevator on our return trip to the 2nd floor
  • We are alone in the “chapel” so we search for any signs that Christianity is even one of the faiths that might be represented in that room…there’s no cross visible, but prominent Islamic paraphernalia, slightly reserved Judaism items, and eventually a “New Testament with Psalms” Josiah unearths under one of the seats
  • Josiah reads a Psalm from the lectern (we’re in full view of some security camera–yikes, does it have audio?), I sing a version of the 23rd Psalm aloud.  Josiah and I both pray aloud for many things/people “in Jesus’ name”.  Josiah begins singing “How Great Thou Art”–a song that always reminds me of my father & the first church of my childhood–solo (he asks me to Not join in) when a swarthy looking young man enters & sits adjacent to the Islamic prayer rug; J voluntarily stops singing & we decide to leave to give the other person privacy
  • Traversing 3 different buildings to get to the Family Resource Center, where we use the computers & partake of complementary snacks/drinks
  • strike up a conversation with Cameron & his mom about Cameron’s medical needs (brain tumor found 4/30, two surgeries, stroke, etc)–he’s wearing some type of helmet to cover his missing skull…I offer to post his prayer needs on my CarePages medical blog & they agree…we give pointers about living at the hospital etc.
  • J & I both work on both CarePages.com and on WordPress.com blog accounts and attend to some email business at adjacent computers
  • I decide to use one of the consult rooms to call my husband (I don’t have a cell phone) & they are now locked, a new development since my last usage
  • get a staff person to let me in and complimenting her on her new hairstyle leads to an in-depth discussion about her recent Cancer & Heart Attack scare.  We share various stories about medical issues, hospital employment (in my former life), and dealing with overwhelming emotions.  We go on a bit about Transplant issues, me from the family perspective & her from working as staff in an organ procurement organization.  She tells of a family that she turned down as a transplant donor because they didn’t want any of their son’s organs going to any N-words–Wow!
  • we’re interrupted by a volunteer & later an MSW co-worker so we never “finish” our conversation…are those discussions ever really done?
  • Quick phone call with my husband, who’s still at work
  • J & I wrap up computer work & head up to the 12th floor for Skyline Cafe, the Thursday evening complementary meal & music offering sponsored by Delta Airlines & managed by Bob (musician) & Byron (social worker)
  • We assist two different families with in-patient kids on IVs in the elevator
  • We enjoy nearly an hour of acoustic guitar & vocal music as we eat pizza, etc
  • after the event wraps up we speak with Bob & his wife Tracy about my husband’s band, The Lively Pelts, possibly participating musically sometime–I’d cleared this planned discussion with my husband previously–(Bob says Skyline happens Every Thursday of the year, except Thanksgiving)…
  • discover that Tracy & I met before as she’s actually the Pastor at the church kitty-corner from our own church–wow–small world (& I’d almost applied for a recent job opening there)…
  • Josiah tells some tales from transplant & beyond & several eyes tear up…
  • we finally head home during a rainstorm with just enough time to spare to take care of one errand before that business’ closing time; I get soaked to the skin…
  • I send Bob the promised email about the Pelts…and we await to see if God might open yet another door in our lives…

As you can see, even a “simple” day at the hospital can get pretty involved…and exhausting.  Josiah & I both did decently and had an overall good time, which was capped off by the blessing of Skyline Cafe, a pretty rare treat for us nowadays…

Well thanks for stopping by and sharing a bit of our experiences.  Blessings, Valerie

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from a Bing.com image search for “who heals you of all your diseases scripture”

PS Please consider keeping Cameron & his family in your prayers as they travel a new special needs pathway…I’ve written more about their situation here if you’d like more details:

http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3856615

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Sharing from 2015, Prayers For Conner

Source: Prayers For Conner

This is an older post but tells of some of the details of a young family experiencing their baby’s heart surgery.  The minutia are different from our experience, yet in many ways the story is the same.  I’m so thankful that other writers share from their hearts their experiences and their perspective.  This “Prayers” posting was written by Conner’s grandmother–and what a loving, godly heart she exhibits…

ConnerJune20174

 

“Added note. To all who were here with us when my grandson Conner had his heart surgery almost two years ago now, who have asked so frequently how he’s doing, I added his picture. Yep, he’s one of the next generation of fearless daredevil boys in the family. His favorite thing is climbing and jumping, which he’s in the process of doing here. Thank you all for remembering him.” 

This update on Connor, and his picture, is from his Grandma’s recent posting (that is also well worth the read) here:

Thank You God, For Men. Real Men.

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It is a blessing to me, and hopefully to you as well, to be reminded of the Lord’s faithfulness in delivering other people out of their challenging circumstances.  I know nothing of this family beyond the two posts referenced here…but I know the Joy of seeing a heart surgery child running, climbing, and in general just being a boy!!!

Blessings,

Valerie

 

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Update June 23, 2017

Please check this post at my son’s new blog for further info about Conner & his family in the Comments Section.  Thanks!

https://josiahsfreakshow.wordpress.com/2017/06/21/josiahs-first-post/

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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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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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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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…

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Thoughts on “I Can’t Do This Special Needs Life”

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It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time).  Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes.  I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

from: http://www.keyministry.org/specialneedsparenting/2017/6/9/i-cant-do-this-special-needs-life

The bolded part in the above quotation is what got me back typing away here.  Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry).  I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School.  At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break.  Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living.  Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

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from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace!  These extensive trials have driven our family to the Foot of the Cross time & time again.  And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

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from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution.  It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

  • Pregnancy problems/IUGR (Intra-Uterine Growth Retardation AKA small for gestational age)
  • Prematurity, Very Low Birth Weight, 2# 6 oz (qualified for SSI in the hospital)
  • Failure to Thrive
  • Congestive Heart Failure
  • Complex structural birth defects
  • 2 1/2 months in the NICU (Neo Natal Intensive Care Unit)
  • Ambulance ride to a different hospital for Open-Heart Surgery
  • Living apart from my husband for 3 months during heavy season of stress
  • Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…
  • Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…
  • Urinary Tract Infection delaying hospital discharge, I discovered this
  • Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old
  • Breathing Machine (Nebulizer) with meds & chest percussions
  • Seemingly endless vomiting with practically every feeding and/or dosage of meds
  • Various Proprioceptive & Vestibular interventions, brushing, joint compression, etc (mostly done by me)
  • Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery
  • Visiting Nurses
  • Medicaid
  • WIC
  • County Health Departments
  • Numerous Medical Specialists with sometimes conflicting advice
  • In Home Therapy visits (PT, OT, Speech)
  • In Home Teaching, in three different cities
  • Preventive Care Services, support for a family in near crisis
  • Being written up in our local paper because of the uniqueness of our situation
  • Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…
  • Major behavioral & emotional problems
  • Balance Problems & Hearing Loss needing Myringotomy Ear Tubes surgically placed numerous times to help correct
  • Autism Spectrum issues, but not diagnosed early enough nor classic enough to get real help from the school system
  • Sound Field System in School
  • Neuropsychological Testing numerous times, virtually all data was ignored by school “professionals”
  • Unspecified Neurological Impairments
  • Balance, Equilibrium, Processing, & Sensory Challenges
  • Unusual Therapies; Sensory Integration Therapy, Music Therapy, Art Therapy, Social Skills Group, etc.
  • Early-On Program
  • Developmental Assessment Clinics
  • Virtually no “typical” twin experiences, nothing like what “the books” say
  • Complex staged birth defect surgeries
  • Positional Head Deformity, requiring an orthotic helmet to reshape the skull
  • Moving our residence across the state to be closer to adequate medical care (husband’s job change & our near year separation, except for weekends, during the entire selling/moving process)
  • Second Open Heart Surgery at about 4 1/2 years with statements implying that another heart surgery would be likely within a decade (though a 3rd surgery in this domain still pends)
  • High Blood Pressure, Blood Pressure Monitoring Machine, spotty compliance
  • Numerous Medications over the years
  • Social isolation for our son in particular, but our family as well, due to the complex challenges & lack of awareness on other people’s parts
  • Years of car rides, mornings, announcements of plans changing, etc that resulted in ceaseless screaming, hitting, kicking, etc…=familial upheaval
  • Years of deliberate “button pushing” of all family members, being a deliberate atomic bomb within the family=massive stress
  • Lifelong Pediatric Cardiology care
  • Lifelong Pediatric Urology care
  • Massive battles with Special Education after having positive Special Ed Pre-School experiences
  • Only one month in “real school” with his twin brother
  • Having to “repeat” a year of Special Ed Pre-school due to educational negligence, incompetence, &/or indifference & my own weaknesses in entering the fray
  • Severe Learning Disability in Math, misinterpreted as global delay
  • Tutoring
  • Being told for years we needed Advocacy help, but rarely finding any available and/or affordable
  • Community Mental Health, home & center-based care
  • Insurance challenges in getting needed services covered/provided
  • Respite Care, both in home and center based
  • Chronic Bedwetting, well into the teen years
  • Multiple Sleep Disorders requiring CPAP usage
  • Congenital Double Vision, eventually “corrected” surgically
  • Student Aides/Para-Professional involvement only after major battles with Special Ed even though doctors insisted this was vital at the outset of regular schooling
  • Massive Educational & Disability Discrimination…any real recourse here???
  • Learning about free advocacy training and materials but when pursuing them discovering the programs were cut; same now in relation to job training issues
  • Having a Brain Tumor and Liver Masses discovered at virtually the same time
  • Getting Cancer evaluations
  • Human Growth Hormone deficiencies, but no real treatment because of other complicating issues
  • Being accused by school staff of inappropriate behavior that he didn’t do, and not allowing a parent to be present to assist him in processing the situation
  • Brain Tumor removal through the nasal passage, so no visible scarring!
  • Ultimately needing & getting a whole Liver Transplant
  • Lifelong Liver Transplant Clinic care
  • ADHD, Depression, Anxiety, OCD (Obsessive Compulsive Disorder)
  • Unexplained dizzy spells, EEGs don’t reveal reasons
  • “Hypoglycemia”
  • Emergency Room Runs for injuries & once for an environmental breathing issue that I thought meant my son would die in my arms before we reached the hospital
  • Pervert encounters in the park as a child and at school as an adolescent, with major emotional fallout
  • Spiritual battles that periodically resurface & blindside & overwhelm him
  • Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart
Image result for comfort in suffering

from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce.  It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through.  Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience.  Whatever I have become, much of it is now attributable to being a Special Needs Mom.  It has become a burden, a badge of honor/courage, and ultimately a blessing.  In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities.  We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could.  As my eldest son has said, “Josiah is the heart of our family!”  So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness.  He still sees the Lord with “unveiled face”, being so pure of heart.  The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God!  It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

Image result for beauty for ashes

Image from a Bing.com image search for “beauty for ashes”

 

 

20 Years Later…Red Wings Rocked The Joe

My husband just showed me a Facebook video (I’m Not on Facebook!) post of the amazing Detroit Red Wings vs Colorado Avalanche fight from March of 1997 at Detroit’s Joe Louis Arena.  What awesome hockey back in the day.  We still miss those Red Wings champions (and the ability to watch them on regular broadcast TV)…Here’s a version of that fight as posted on YouTube.com.  Enjoy!

Our oldest son just stopped by and mentioned that this fight gets posted to Facebook pretty regularly so apparently a lot of people enjoy reminiscing about that brawl…

We also found a great write up about this momentous event here, it’s worth the time:

http://www.freep.com/story/sports/nhl/red-wings/2017/03/23/red-wings-avalanche-fights/99495676/

I ended up reading the above Detroit Free Press article aloud to my husband and during the reading our son, Josiah, & his Respite Worker came home & started listening in too.  Ultimately the Freep recounting of events sparked an interesting conversation amongst the guys about Detroit Sports and some of the many changes (mostly not for the better) in the modern era.  It’s great to see my Autistic Spectrum son participate in a lively interaction with other guys in a domain so many love!

Josiah had found a documentary on Netflix about the Detroit Pistons in the Bad Boy era and some of the clips in that “flick” basically amazed our kids…and not just because of the pretty outrageous outfits!  Netflix can be such an eye opener when it allows glimpses into a past where masculinity was allowed freer & fuller expression in our society.  Sports have become “safer” now in many respects, at least perhaps physically…but certainly not “safe” in terms of the ability of people to communicate freely about their viewpoints without sometimes extreme consequences.

Some commentators that I enjoy reading &/or listening to refer to the “Arena of Ideas” in regards to social/political thought & commentary and how it used to be understood that it could be a knockdown, drag out, free for all.  Doing genealogical/historical research in old newspapers can be a real eye opener when you see how the Left/Right divide was clearly on display and openly advocated for by a particular “rag”; now virtually only the left side is on display, but presented as middle of the road…but I digress. Seeing that historical brawl in the hockey “arena” gives us a tangible representation of what a free-for-all of Ideas in the Arena could/should look like.  Have an opinion, take a stand, take on all comers, protect your teammates, defend your honor, don’t go down without swinging, don’t deliver nor tolerate the cheap shots, respect your opponents while doing your best to defeat them, never give up, never surrender (in Churchill’s voice, of course), when knocked down get back up again, stay in the game, go the distance…

There are several scriptures that speak to this process as well, at least for me:

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. Excerpt from BibleGateway.com

Of course, this presumes that you are doing things that the Lord would approve…

Proverbs 24:11 Easy-to-Read Version (ERV)

— 24 — 11 If you see someone on their way to death or in danger of being killed, you must do something to save them. 12 You cannot say, “It’s none of my business.” The Lord knows everything, and he knows why you do things. He watches you, and he will pay you back for what you do.

Easy-to-Read Version (ERV)Copyright © 2006 by Bible League International; Excerpt from BibleGateway.com

I believe this passage is one that supports the Right to Life position of protecting all innocent human life during the entire lifespan…

 

Ephesians 4:26 New International Version (NIV)

26 “In your anger do not sin”[a]: Do not let the sun go down while you are still angry,

Footnotes:

  1. Ephesians 4:26 Psalm 4:4 (see Septuagint)

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. Excerpt from BibleGateway.com

I reference this particular passage periodically with others in relation to the fact that anger in and of itself isn’t wrong…otherwise Christ himself, the only sinless human, would not have displayed it.  Where we get into trouble is in what we Do with our anger.  Having “Righteous Anger” is not an oxymoron!  However, we all need the Lord’s wisdom to act upon such anger in a manner that is pleasing to Him, and productive to the situation.

Ephesians 6:12 King James Version (KJV)

12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

King James Version (KJV)Public Domain

Excerpt from BibleGateway.com

This scriptural passage reminds us that the true battle is a spiritual one.  It is Always Light vs Darkness, Good vs Evil.  We, as believers, need to keep our eyes fixed on the Lord, follow His lead, His Will, and… 

James 4:6-8 New International Version (NIV)

But he gives us more grace. That is why Scripture says:

“God opposes the proud
    but shows favor to the humble.”[a]

Submit yourselves, then, to God. Resist the devil, and he will flee from you. Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded.

Footnotes:

  1. James 4:6 Prov. 3:34

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.  Excerpt from BibleGateway.com

Submission to the Lord is the key here.  We need to be surrendered to Him.  At that point those battles we face should be handled in obedience to His Will.  It means that we conduct ourselves in a manner that is pleasing to Him, even as we enter the fray.

Well, it wasn’t my intention to go off on that battle tangent, but I guess in my heart I’m some type of Warrior.  It ties into the many battles engaged in the Special Needs domains while attempting to champion my son’s rights & needs.  God equips us to do what we must, sometimes only giving us that fortitude once we are in that arena and there is no turning back.  I guess that Bloody Battle at the Joe was more of a meaningful metaphor than I’d realized when posting this message…hmm.

 

May the Lord Bless & Equip YOU for the battles you face as you seek His Face, surrender to His Will, and submit yourself to His guidance & presence in your life!

Your Fellow Warrior in the Kingdom,

Valerie

Here’s a final thought…be inspired by what the Lord can do in and through you…and be encouraged by the music & message here!

 

War in the Heavenlies

Uploaded on Aug 16, 2011

WORSHIP LEADER: RON KENOLY

ALBUM: JESUS IS ALIVE

HMD036

Lyrics:

Making war
In the heavenlies
Tearing down principalities
Standing firm
In Jesus’ victory
Making war
In the heavenlies
Casting down
Every high thing
That exalts
Itself against
The knowledge
Of Christ
(Repeat)

We do not
Bow our knee
To the prince
Of the air
For we know
The truth
Has set us free
And under our feet
He will shortly
Be crushed
And having done all
We’ll stand
In victory

(Repeat Chorus)

Our hearts
Are set apart
For the courts
Of the Lord
And we will not be
Bought or sold (Valerie ammended this line only slightly)
By His Spirit
In us
We will overcome
Pulling down
Every stronghold

(Repeat Chorus)

That exalts
Itself against
The knowledge
Of Christ
That exalts
Itself against
The knowledge
Of Christ!

 

  • License

    • Standard YouTube License
  • Music

    • “Making War In the Heavenlies” by Ron Kenoly

Both the video clip and the lyrics above are copied from YouTube.com

My special son, Josiah, will often blast the above song on his CD player and it reverberates throughout the house and our souls, encouraging us all to not give up, even in the midst of the fray…Josiah is an amazing warrior in the Kingdom of God!