Tag Archive | Special Needs Parent

Father’s Day Wanderings…

Happy Father’s Day, Michael.  I love you!!!  Valerie

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My husband Michael Ellsworth Curren Rocks!

I’m so thankful for the heritage of faith!  My own father has been an incredible example of godly fatherhood for my entire life.  He has found the way to balance faith, fun, and fatherhood…and it’s been passed down to both his sons and his son-in-law, my husband, Michael.  What a tremendous legacy…his children rise up and call him blessed!

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My husband has experienced Father God as a literal father to himself, someone who grew up basically fatherless.  Although his parents were married when he was born, their marriage dissolved during his early elementary years and his mom moved him nearly halfway across the country surrounding that divorce.  He only saw his dad a couple more times before he died during my husband’s teen years.  He later had a step-father, who being a strong Christian, lead both Michael and his mother to the Lord!  This man has been gone now for nearly two decades, and was a thousand miles away during my husband’s own developing into a father years.

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Michael is an amazing man of God, who has a near Abrahamic friendship style relationship with his Heavenly Father.  He has overcome the odds of familial alcoholism and serial divorce and lives his life as a testament to the power of Christ to break the chains both within and about us.  There are not enough words to convey the impact of seeing Michael persevere through the crucible years of Special Needs Parenting, and that is still the gift that still keeps on giving, though thankfully not with the same brutality as the early years!  We love our special son, but he has challenged us in many ways–certainly beyond our own abilities to endure apart from God’s grace & strength…

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image from a Bing.com image search for “quiver scripture”

My husband is such a blessing to me and to our four children…and also now to our new daughter-in-law.  I really can’t wait to see where the Lord takes us on this wild ride that is marriage and family life in the (hopefully) many years to come.

Happy Father’s Day 2017

25 Years of Marriage

23 Years of Parenting

1 month of In-Lawing

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Bing.com image search for “what a ride”

Below is a copy/paste from my niece’s Facebook page.  She is quoting a poem my brother Curtis wrote about our dad many years ago.  [Correction per my parents, see Comments below, this is actually a poem that Ashley wrote for my brother Curtis on the occasion of his birthday earlier–my mistake…]  These sentiments are so applicable to my husband, my father, my brothers, and presumably to my sons when they too are blessed with Fatherhood someday…having all had many examples of men doing Fatherhood God’s Way!  Enjoy…
Ashley Farasyn with Dawn Williams Stoddard.

Thank you for the gifts you’ve given me. The gifts of laughter and story-telling and articulation and poetry. Thank you for teaching me math is my friend and for being a rock and a firm foundation to stand on. Thank you for lifting me out of the water when I go under and gasp for air. Thank you for always knowing how to catch me even if I flail in the air and come down the wrong way. Thank you for being a dad who knows how to be right but also knows how to be wrong. Thank you for loving Jesus and bringing generational freedoms to your children and your household. Thank you for all your prayers and healing. Thank you for stepping into soberness so that I could follow. Thank you for speaking life into others and being sometimes the only bright part of someone’s day. I love that your main goal with whoever you come across is to make them see the love of Jesus and also pee their pants. I love how God made you. And I love that He put us together. And since you are not on FB, I will tag your wife because I know you use her phone in equal amounts. And because I can’t help it, I am recycling your birthday poem because it’s all so true. You are one of my favorites. ♡♤¤

“What does it mean,”
“What does it mean?” you say
To have a dad who has fun
and knows how to play?

It means there’s games, and smiles,
and laughing galore
And tears rolling down cheeks
and more, more, more, more!

The more games there are,
the more creative our minds.
You see, dads who have fun
know how to seek, hide, and find!

They like to think out-of-the-box
and do the impossible.
Dads who have fun
are down right unstoppable!

What can’t we do
if we can climb the shelves at the store;
And throw cans of spaghetti sauce
at dinosaurs on the floor?

How about walking through forrests
and crossing tree logs,
To find the buried treasure of pirates
filled with chocolate coins and pogs?

When you have a dad who has fun,
nothing is boring!
So there’s no time whatsoever
for sleeps, yawns, or snorings!

Games abound by the dozen
and so does the fun!
Have you ever turned off the radio
and at the top of your voice, sung?

Have you ever crossed your legs
because you’re laughing so hard you might pee?
I don’t want to say it was me that did it,
but okay, it was me, it was me!

Dads are the best!
(But the fun ones are better.)
Your cheeks and your pants
just might get a tad wetter!

Don’t underestimate
the power of fun!
Laughing is therapy,
I asked a doctor once.

When you laugh,
you gain confidence
which is the opposite of fear.
A dad who shows you to laugh,
shows you he cares.

My dad is funny
and boy, he sure is the man!
He’s my number one sitcom
and I’m his number one fan!

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Posting & Picture from my niece Ashley Stoddard Farasyn’s Facebook page, showing Zachary, daddy Curtis, and Ashley circa 1994

Here are a some special photos from my husband’s Facebook page: 
Family
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Michael & Valerie engaged, December 1991

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that was then, this is now…”It’s not the years, it’s the mileage” as Indiana Jones said…

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sons: Josiah, Brandon, & Nathaniel; husband Michael; & father Bill, circa 2011; at The Shack

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Michael & our daughter Clarissa hunting Michigan’s North Woods, circa 2014

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The pool where it all began…Valerie and Michael met at this pool in their then apartment complex, Sand Dollar, in Tulsa, Oklahoma in May of 1991. Val says that since they had no one in common, God introduced them. Returning to the scene of the crime they documented how things have changed over the ensuing years, Summer 2010.

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Michael and his mom’s artwork; the rest of us will meet her some day when we are all with the Lord…

and in honor of the familial ADHD tendencies…

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Michael’s Facebook caption for this one, “One of the dangers of being distracted by a squirrel!”

Rock!

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Binding Faith Band, the beginning of Michael’s Christian Rock Band Adventures!  Jason-rhythm guitar, Tim-vocals, Greg-lead guitar, Paul-drums, & Michael-bass

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rocking in his basement Man Cave before allowing our son(s) to live there instead…

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Rocking Rocktoberfest with his former band, Harken

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New Band, Lively Pelts: Marty-lead guitar & vocals, Roy-drums, & Michael-bass & backup vocals, at Blessing of the Bikers, Victory Biker Church, June 17, 2017

Faith Walk

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“Went to pick up pizza and got caught up in appreciating my Fathers handy work! Artist God.”

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Michael’s found the narrow way, and wouldn’t you know it’s in the North Woods of Michigan!  I’ve always said that Michigan is God’s Country…

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

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from Bing.com image search for “special needs life”

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
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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…

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Relating to Others in Pain

” And the children who bring him the most comfort are those he barely knows, at least outside of this center…With these peers, he does not have to explain. He gets no curious stares. They are, for the time being, his peeps.”

The room where I am my very best self

image is from http://www.carolecgood.com/genesisofcarolecgoodcom.htm

This is such a beautiful post by a woman with deep wells of the soul as both a wife and a mother.  I can relate to her experiences on several levels, though not (thus far) in the Cancer domain.

The quote above reminded me of how amazing it was to see my kids years ago interacting with other kids at a Siblings of Special Needs Kids Weekend retreat.  I had Never seen my kids before bond so quickly with complete strangers.  The shared “Sibling” experience was also something that goes beyond words.  There is an instant camaraderie with others who instinctively “get it”…and none of us needs to explain our background for validation.

This is similar to my own experiences in interfacing with other parents of Special Needs kids.  We live in a world that regular families rarely intersect, except during events like the random ER visits a “regular” kid may need from horsing around.  The endless waiting, confusion, helplessness, hopefulness, fear, determination, bravado, relief, and exhaustion are constant companions in our lives…not occasional nuisances during “normal” kid mishaps.  Having to weigh medical & therapeutic & educational “expert” opinions against your own deep well of experience and hard won knowledge of your unique child’s makeup and then attempting to synthesize these disparate themes into a cohesive whole is a lifelong song and dance.

I’m so thankful that authors, like the woman above, have been willing to bare their souls to share their profound journeys of life, love, loss, healing, endurance, and faith to move, inspire, and challenge us to also “take up our cross” with grace.

Blessings,

Valerie

I posted this comment on the above author’s posting too…

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Thank you so much for sharing beautifully from your heart and the depths of your soul. Your words inspired a post on my blog here
https://specialconnections.wordpress.com/2016/10/19/relating-to-others-in-pain/
Blessings, Grace, Peace, & Joy (even in the midst of sorrows) to you and your precious family,
Valerie Curren