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Be Careful What You Ask For!

Someone at another site asked me how I was doing…here’s what I shared:

“I’m sorry you are carrying such a heavy load.

I’m relatively OK.  I’m seemingly “stuck” in some type of quasi-PTSD hopelessness loop over not being able to get any positive traction on my son Josiah’s Special Education case.  I’m still furious about how they broke the law with impunity & how the legal protections for the vulnerable are twisted into butt-coverage for the bureaucrats…it makes one feel so helpless/hopeless.  I did Major work for like a year & a half on Josiah’s Special Education case & when we finally talked with an attorney (after some funding from a family member made such a conversation possible) he basically said “there’s nothing you can do for your son…but I’d really like you to go ahead & be an advocate for other kids”.

I’m not fully ready to concede defeat but am still so burdened by the pain & frustration of it all that it is Very Hard to move forward mentally or emotionally.

My husband wants me to speak with a Counselor but I am skeptical that there is really anyone out there (besides God) who can grasp the magnitude of what we’ve faced historically with our son, it’s ramifications in our lives & for me personally, & I can’t even muster the energy to attempt to contemplate having such (allegedly) therapeutic conversations.

I’m not (obviously) actually very good at “letting things go” & really need the Serenity Prayer conceptually to help with this process.  I hate to “give up” but I also hate to see the “system” escape unscathed & have Zero Accountability.  It’s also still too bitter & unapproachable to try to advocate for other people’s kids (even if I could muster the energy or find the appropriate avenue to do so) when there is still so much that needs attention in my own son’s life.

These are like those “first world problems” that lefties mock people for.  Not the basics of food, clothing, or shelter but more the apex of that Maslow’s Hierarchy of Needs Pyramids proverbial “Self-Actualization” BS arena, I think.

Sometimes I think I’m just too scarred from all the battles to even begin to know how to live in “regular” society.  I’m in pseudo-hibernation/cocooning in hope that (eventually) winter will end (my fat stores will melt off!) & I’ll emerge a beautiful butterfly with sufficient energy to pump those superfluous abdominal fluids into those nascent but hopefully beautifully majestic wings & somehow manage to soar above before my brief sojourn planet-side is over!

OK, so it’s very late & I’m expressing my self in verbose flights of fancy…Thanks for asking how I am…I hope you don’t mind my ridiculous reply!

If I may quote you here “I am an emotional basketcase and the pain is brutal and that’s the upside of my grief right now.”  I really do relate…”

Our conversation can be found here:

Prayer Requests – 9

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Change–Blast From the Past

This song just keeps popping in my head…check out the YouTube site for detailed info on the song & musicians if you’re interested here: https://www.youtube.com/watch?v=QJMUugMQeIg&list=PL8Z7cWD-PWoDhiXoOJx3ypcSSW90YLyNO&index=7  

I couldn’t even remember the artists who did this song so looked up some of the lyrics online to find it was done by “The Archers“, a Christian group from “back in the day”.  I found this album, Fresh Surrender, at another family’s house, I was there babysitting their kids, & used to play it sometimes on their record player after the kids went to bed.  At that time I remember thinking that those parents were pretty cool to have some (seemingly) Christian Rock Music choices in their home.

This family has stayed pretty closely connected to my family over the years.  The parents & my parents have been part of a local “Prayer Group” of Christian couples that has been meeting regularly since the 1970s.  Several members of this Prayer Group have since gone on to their reward & the Prayer Warriors are now more likely to meet separately as a Men’s Group & a Women’s Group than their former Couples-focused Prayer Group.

Many of these Prayer Group Prayer Warriors have been an integral part of Prayer Support for my family over the years.  Jon & Judy, whose kids I was babysitting, were also heavily involved in praying for my son, Josiah, & our family during his Liver Transplant process over the years…What a Blessing!

It’s funny how a song from decades past can pop into your head & grab hold of you.  Here are the lyrics, from another site: http://greatgreatjoy.com/2014/11/19/change/

Change
Don’t come easy sometimes
I’m a stubborn girl
I just want to be alone
Sometimes

Maybe You’ve been showin’ me
Just how nowhere
My own will has been
As far as You’re concerned
And You really love me

Lord I need Your love, I need Your care

And I welcome Your change
Like I welcome the rain
After nothing’s grown in a long, long time

Sometimes
Any change is better
Than staying where you are
When you’ve been there too long
Already

All the changes you’ve been bringin’
Only seem to heal me deep inside
And I don’t wanna be alone
Without You

Lord I need Your love, I need Your care
I find my rest in knowing that You’re there

And I welcome Your change
Like I welcome the rain
After nothing’s grown in a long, long time

Ah, ah ah ah, ah ah ah

And I welcome Your change
Like I welcome the rain after a long, long time
Been a long, long time

La la la la
La la la la
La la la la
La la la

I’m so thankful for the ongoing fellowship of faith that is available to all of us.  The Lord is permeating the world around us & is calling to us always, if only we have eyes to see & ears to hear, we can connect on a deeply personal level with the Eternal God.  In encountering this song again the line “Only seem to heal me deep inside” is the one bringing those misty eyes.  I’m so thankful for the tender loving touch of the Master’s Hand!  Thank you, Lord, for showing forth Your Love & Grace to me, to us all, always.

Blessings,

Valerie

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If you are interested in learning about our experiences with Josiah’s Liver Transplant, I’ve “encapsulated” some of that journey here:

https://specialconnections.wordpress.com/2017/07/30/four-years-ago-today-a-transplant-tale/

I’ve also archived our journey (including messages, like those from Jon & Judy mentioned above), as recorded in my CarePages blog, JournalingForTheJazzman here:

https://jazzmanjournal.wordpress.com/about/

I’m still developing the JazzmanJournal site so it’s easiest to navigate from the About page currently, or to do a search.

If you might be interested in following along further on the journey with Josiah here is where I’m continuing to blog about his medical situation & prayer requests & happenings with him & the family, since CarePages is ending.  God Bless YOU!

https://www.caringbridge.org/visit/josiahcurren

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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Love Poem, from My Husband!

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What  I Love About You

 

I love the way you think,  I love the way you smile,

I love the way you walk through life, In and out of trials

 

I love the way you laugh , at my silly little jokes

I love it when you tell a tale, and entertain the folks

 

I love it when you appreciate, the handy work of God

But also seeing clearly through… the political facades

 

I love how you zero in, on the important things in life

Trying hard to stir up dust, but avoid annoying strife

 

Most of all I just love, the person that you are

Knowing full that one day, you will light up like a star

 

For the Father made you well, no matter what “they say”

For in-Christ you have His love (and mine) ..that will never fade away.

 

I love you Valerie Curren,   …your husband          Michael   06/28/17

 

My husband just spontaneously wrote this for me today.  What a Blessing!

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Father God

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copied from the Lively Pelts Band Facebook page

Just Because…I love this sentiment…& these scriptures!  Blessings, Valerie

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from a Bing.com image search for Father God scriptures

from a Bing.com image search for Father God scriptures

from a Bing.com image search for Father God scriptures

from a Bing.com image search for Father God scriptures

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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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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  • 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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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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