Slurping Life

Afraid To Write The Words

Afraid to write the words.  Once you write the words they are real.  Other people may read them.  Then you have to own them.  Then you are known by the words.

The sobs come and leave slowly and come again until I fall asleep.  I miss the comfort of my bed, but it seems wrong to take this noisy sorrow there.  So sleep comes on the sofa...alone, where no one will be disturbed.  Wake, muddle through the day, repeat.

It has been years in the making.  The realization that my words have not agreed with my heart.  In reality my heart has been in mourning for years.  It was only a few days ago that my mind, my body and my heart - together - awakened to the truth.  Mourn...

...then move forward.

I love my children.  I pray for them...for me...for us...that their limitations strengthen them...that they not be limited by my limitations.

We move forward...just like always...

...with hope

...with love...

...with tears...

...with laughter...

...and did I mention...

...love?

We're good...thanks for asking.

When Harry Met Sally At Our House

It was the beginning of a beautiful relationship. 

After the mating ritual on this very spot Sally single-handedly single-beakedly built their home.

She gave birth to their children and awaits their emergence into the world.

While Harry watches, pacing fluttering to and fro, ever the protector.

And each morning they greet our family with cheerful songs.

Thank you, Harry and Sally, for choosing to make your home with us.  For bringing chirping, a reminder of instinctive love and renewal to our hearts.  We needed that here...in our home...where the days have been a bit trying for weeks.

We can hardly wait to see the babies.

Eight Hours On A Golf Course With Boys Bearing Weapons

"Hi.  My name is Wil.  I'm our team's adaptive golfer." 

 

That is how Wil greeted each and every person he came face to face with at Monday's golf tournament.  An adaptive golf tournament is held annually in our city with teams comprising a mix of physically challenged and non-challenged golfers.  The boys and their dad were a team. I was the photographer, driver of the second golf cart and official ball locater.

A woman has not lived until she has spent EIGHT HOURS on a golf course with her husband and three of her four sons. (Our oldest was at Disney World proposing to his girlfriend.)  Please remember that the three sons on the course live with a mix of ADHD, Bipolar Disorder, Asperger's Syndrome, Cerebral Palsy and PDD NOS.  You had to be there.  I'll share just a few photos from the day...but seriously...you had to be there.

"Mac.I.Said.Keep.Your.Foot.Off.The.Accelerator."  Yes, that is dad in the photo admonishing Mac before the tournament even began and not for the first time, but I bet you guessed that.

Check out the straight legs and flat feet below.  Many surgeries resulting in months of wearing casts from the groin down..another surgery expected at next growth spurt, maybe more...intense rehabilitation following each surgery...physical therapy since infancy and ongoing...occupational therapy for upper body, sensory integration and functional skills since infancy and ongoing...speech therapy since age 18 months.  Those surgeries and aftermath were worth every tortuous moment of pain.  And Wil smiled through almost all of it.  Wil is SO (one of) my heroes!

One of the most heard phrases of the day, "I'm hungry."  How could that be?  They were given snacks and drinks constantly.  The boys literally ate their way through 18 holes of golf.  They were also fed lunch and dinner.  Still we had to take them out to eat after the tournament.

I was out of the cart, back turned for a few seconds when I heard Mac whisper, "Psst.  Lee.  Do you think mom will notice if I press the accelerator?"

Club selection is serious business for Lee requiring much concentration...

...not so much for Wil.  Grab a club and whack the ball...or a brother...no need to ponder. 

There are no photos of the sword fighting incidents because being an intelligent woman, I was running for cover at the time.

Second in frequency to "I'm hungry" was the phrase, "Does that count?  Can I have a do-over?"  Notice this shot of Mac's follow-through...the ball is still on the tee.  I think Tiger Woods is secure in his number one ranking for at least a few more years.

A chunk of time was spent searching for balls.  I was driving that cart all over the course...through the woods...by the bunkers...along the water hazards...while the boys walked and searched.

Watching Wil's putt.

   

Most of the day was absolutely freezing and windy, finally for the last three or four holes the sun shone and the guys did remove their jackets.  Trying to get a good shot of these goofs together on the golf course was futile.  But here you go...look at those sharp-dressed golfers.  I went shopping with all four of them...at the same time...[do I hear applause]...to buy those clothes for the tournament.  Didn't play so good, but they looked the part.

By the way, the third most often spoken phrase of the day was "Mac.Keep.Your.Foot.Off.The.Accelerator."

There you have a overview of our eight hours on a golf course.  I survived.  The guys let me sleep in Tuesday morning.

If you have never watched physically challenged athletes compete in any sport, do yourself a favor and attend an event.  It was amazing and inspiring to watch golfers in wheelchairs, with one arm, with one leg, with two artificial legs, with cerebral palsy and a blind golfer.  We played behind the blind golfer...phenomenal.

My guys finished last.  However, it must be noted they were the only kids in the tournament.  All other entrants were seasoned, adult golfers.  But no one beat my dudes when it came to fun...they took the fun trophy hands down.

Thirteen And Alone On A Crate

Thirteen can be so dang tough.  I remember what thirteen felt like as a girl, but I haven't a clue about being thirteen and a boy.  Word from the crate is that it can be a downer.

Stepping back to let dad handle much of the tribulation that comes with being a thirteen year old boy is tugging at my heart.  Mom is suppose to kiss the boo boo and make it all better, but those days are gone. 

I may need a crate of my own.

The Great Novel

"Mom, are you ok?" asked Lee.

"Yes, sweetheart.  Why do you ask?"

"You just haven't seemed to have much fun lately."

"I know.  But I'm ok.  I promise."

"I was just checking because I love you."

An exchange of hugs and he walks away to continue the harassment of his younger brothers and the struggle of functioning as a teen living with Bipolar Disorder and ADHD.  Amidst his personal turmoil Lee was concerned about me...the mother.

I have been out of sorts for several months.  Obviously I was not hiding that fact as well as I thought.  Never wanting to be the cause of anxious moments for my sons, I have always tried to shield them from what I believe to be unnecessary concerns.   But then if children do not learn the realities of life from parents...what's the alternative?  Not knowing until a stranger slaps them in the face with reality?  I think a gentle poke from mom and dad is best.  Still I have to work on me and the flux I'm experiencing.

Mothering special purpose (needs) sons is a blessing, a gift, but it is also one difficult gig.  Many of you understand because you live the life.  Several posts have been rolling around in my brain for weeks discussing the current challenges with the boys.  The words just do not come.  I think maybe my brain is literally exhausted, stressed...it just wants to forget everything for a couple of hours each night.  Fine by me, really.

Perhaps I have been working too hard to bring the boys into the normal realm of life.  The truth is having them function in society is a huge hope that I have.  But is it really a goal for my personal satisfaction?  Am I trying to escape social scrutiny of myself or of the boys?  Honestly, behaviors of Bipolar, ADHD, Cerebral Palsy and Asperger's Syndrome children are weird to the unsuspecting eye.  Also, the boys are immature for their ages, especially Lee who recently turned thirteen.  He is not emotionally or socially a teen...far from behaving even as a young thirteen year old.  But is that a bad thing?  I have never wanted the boys to be secular children...to follow the popular crowd...that is one reason we homeschool.  But...

Am I trying to write a book of their lives rather than read the book that has been written?  I believe children come to us with a definite purpose for their lives, and we must love them, study them, and decode their strengths in order to help them fulfill their purpose.  I do not believe we are to mold them into clones of ourselves or others.  Children often spend their entire lives trying to overcome what we make of them.  I do not want that for my sons.

God doesn't give parents manuscripts to write, but codes to decode.  Study your kids while you can.  The greatest gift you can give your children is not your riches, but revealing to them their own.  ~~Max Lucado

Go.  Caress the cover...gently turn the pages...allow the plot to unfold... your child is the great novel.

No Umbilical Cord

Journaling my thoughts...

A small square room with four chairs, a desk with a computer and office chair, one window with blinds, bookshelves, a couple of plants.  One psychiatrist, one mom, one child.  The things unseen are indescribable.  Not one person in that room can feel the emotions of another, nor hear the thoughts of another.  The time here feels like a crap shoot.  A roll of the dice.

The psychiatrist speaks, directing questions to the child, then listens for responses.  The child's words are almost inaudible.  His eyes in constant flux...blank gaze, quick glance, side to side, blink blink blink.  He traces the brads of the leather chair with one finger...across, down, around, up, across, around.  He moves his head...side to side, up and down, back and forth, briefly hangs it down.  He wriggles his bottom in the chair...shifts left and right, forward and back, bounce bounce.  He repositions his legs...crossed, open, in the chair, dangling. He takes breaths...deeply, shallowly, rapidly, slowly, pauses the breathing for a few seconds, sighs.  He runs his fingers through his hair.  He looks at his mom with eyes pleading "help me".  He has very few answers.  He has no focus.  He can't remember clearly.  Answers require focus, memory.  Answers don't come because the child does not have the ability to concentrate or accurately remember the things he's done or experienced in the previous week.  The time here feels like a crap shoot.  A roll of the dice.

The psychiatrist speaks, directing questions to the mom, then listens for responses.  The mom's words are clear, strong.  Her eyes are intently focused on her child, astutely absorbing every move, every sound he makes.  Her fingers clasped together in silent prayer asking that the answers be revealed.  Her head pounding with the inability to feel her child's emotions, know his thoughts.  She sits in the chair, still.  She shifts her body slightly.  She takes breaths...deeply and slowly, hoping to regulate her child's breathing.  She rubs her forehead.  She looks at her son with eyes pleading "tell me".  She has very few answers.  She has unwavering focus.  She can remember everything, clearly.  She remembers the things he's done and experienced in the previous week.  She hates that he has to live it and that he has to relive it through her voice, her words.  The time here feels like a crap shoot.  A roll of the dice.

The child looks up.  The mom looks over.  Their eyes meet.  The child winks.  The mom mouths the words "I love you".  The child smiles.  The mom smiles.  The tears quietly stream down his cheeks, her cheeks.  The time here feels like a crap shoot.  A roll of the dice.

They rise.  They walk through the rectangular door of the square room.  The mom gently tousles her child's hair, gives him a hug.  The child wraps an arm around his mom's waist, squeezes.  Their love is no crap shoot.  No roll of the dice.  Their love is mutual, deep, powerful.  Through the love and the plan of God they are mother and son...no umbilical cord ever joined them...the bond was born of heart and soul...and she would die for him.

At Which Point The Seams Unravel

In one moment
the togetherness
that was me
has come undone.
No longer loosening
one stitch at a time.
Rather,
every seam
has unraveled.
The garment that once
clothed my composure
has come undone.
My soul lies naked.
There is no cover
to
warm
me.

The phone call came Thursday afternoon.  We now have a new doctor on our roster...a Pediatric Cardiologist.  I literally came unraveled.  It was as though someone pulled loose that last dangling thread that was holding me together.

I had not planned on a phone call revealing my Wrapped Emotions project this week.  When Phyllis, our guest blogger, posted her intriguing project, I knew what I would do. 

But I don't care what you use (the ideas above, or paper or fabric is fine or even cookies if you'd like - the sky's the limit)...break something or cut something or separate something and then put it all back together into a new and beautiful whole. Breaking something changes it, perhaps irreparably, but it gives us a new opportunity, a new chance, a new beginning, to create something different and something whole.

(You should read the entire post.)

But then literally, I became unraveled by the one more thing, the one more diagnosis, the one more problem placed in our family's life.  One more issue with which my child must deal. One more issue with which our family must deal.  I never try to explain here how truly difficult it is navigating and nurturing the needs of my sons.  It is so tiring to live it, emotionally and physically, that I can't even think about delving deeply into words of explanation.  Plus I do not like to whine...yet, here I am, whining.

I took my favorite t-shirt and cut it up.  I sloppily brushed gesso across a page of my art journal.  I pressed the irregular squares of pink fabric into the gesso, leaving my fingerprints on each one.  When I finished I noticed that down the center was the seam of the T-shirt...cut, broken, but almost together...almost together.  This was unintentional, done without thought.  Seeing it made we wonder.  Will our life always be "almost together"?

I honestly don't know how to feel right now.  I can't even cry.  I want to disappear.  Is this how it feels to lose one's mind?

Together

I'll not share my completed art journal page.  It was created in moments of deep, personal despair...just too dark and ugly to share...too raw.  But it's creation was necessary and allowed me to come unwrapped...then re-wrap the package of me with pretty paper.

Trust.  What I know about trust is that at this moment mine does not extend beyond God and myself.  Honestly, I thought that I could not trust myself, but clearly I can and should.

This week's Wrapped Emotions project really is not difficult for me...I am well-aware of each of my fears and I slay them daily.  My place of trust is within myself with my faith. My ritual of renewing that trust is found in calming moments of the night, embracing the quiet beauty of creation which surrounds me in what is my time of peace. 

This week the calming moments of my nightly renewal have stopped.  There's been no time to commune with the peace of the night, and it's because I failed to trust myself...what a mother knew about her child.  I gave in to the trusting of doctors, again, and am left with the ache, the guilt, the tears as I have watched my child pay the price of my trust...in someone else.

During the past two weeks I have been brought to a breaking point more times that I can count.  Even to the point of believing life for me could not go on...not one day more.  I hurt so hard, so deeply for my child that the grief was too much to bear....at least I thought it was too much... 

Then my child's eyes met mine...his tears flowed in unison with mine...his heart beat in a rhythm of pain with mine...his words blended in harmony with mine..."I love you"...

A new ritual begins.  Nightly, as sleep fails to embrace my child, I trust my soul.  As only a mother can, I wrap my heart and arms around my child...stroke the precious head of fear...kiss the salty tears of pain.  Together, we will fear.  Together, we will trust.

Blogging Friends Are Real

I sit here and think.  My face-to-face friends make compulsory remarks of support and concern...reach out with arms of love...offer their well wishes and prayers.  After all, they are face-to-face with me.  Their polite upbringing requires that they do these things even when they honestly don't feel like it.  I know they care, but it is often easy to discern the "I don't want to hear this today" mindset...and that's really fine.  We each have our own lives, our own problems.

Then I read your comments... and I hear the voices I've never really heard...feel the hugs of friends who have never touched me...connect with people who breathe the same air but are miles away.  You will never convince me that blogging friends are not real.  How easy it would be to click away without commenting on a blog post that is less than uplifting...without a second thought...without extending arms...without making a connection.  But you chose to give me a part of yourself with your comments...with your thoughts...with your prayers...

My blogging friends are real, and I appreciate you. 

~~~

I have not been able to visit the blogs of everyone who commented at Slurping Life this week...my time and attention is rightfully focused elsewhere.  I always make a point of visiting my blogging friends and never regret the effort.  But this week, well, you understand.  Have a beautiful weekend...and remember to hug a friend...even when you don't feel like it.

Autism, ADHD, Cerebral Palsy ~ Share The Planet

Our first week's prompt for fun is up at Wrapped Emotions (The prompt was edited 12 noon).  After reading here, come over and express yourself.

~~~
Mac, my son with Asperger's Syndrome, is an avid reader.  At age ten he reads on a high school level and reads very fast.  Although he reads books considered much above his age capabilities, Mac still loves the easier-to-read children's picture books and devours multiple books in a brief sitting.  Mac is a methodical person, not uncommon for an Aspie, and carefully prepares for his reading time...

Lee, who at age twelve has been reading on high school level for several years, also loves reading, but not with the same obsession as Mac.  He also enjoys pulling out the easier children's books for a bit of fun reading.  Lee lives with severe ADHD and his method of reading time organization is a bit different than Mac's...

Wil is nine years old and not only lives on the Autistic Spectrum, but has struggles due to moderate cerebral palsy.  He has learned to read and reads on a first grade level, which means he is not as independent a reader as the other two, but still loves books.  When given a choice of reading material, Wil always chooses one of his many NASCAR books.  He sits and speedily flips the pages making race car sounds and speaking a NASCAR language I don't understand...and all I see is a blur of motion...

I smile and cherish the many ways my boys are completely different from one another...how they love and tolerate one another.  Wouldn't my house the world be stiff and boring if we all did things the same way?  Wouldn't it be a wonderful world if we each tried a little harder to understand those who share the planet, but live in a different world?

~~~

Interesting How Much Education Teaches You

Honestly, I should be educating my children at this moment but some days just scream "QUIT ALREADY!"  It's one of those less than gratifying homeschool days and after a visit with the psychiatrist, I feel complete affirmation in throwing candy to the boys, turning on the television and vegging in front of my laptop.  Today in the eyes of my boys, I am Mother of the Year. 

This morning at Lee's appointment, it was truly interesting to have two...two, not one or one and an assistant, but two...well-educated and highly-trained psychiatrists tell me, "Wow, you have your hands full."  Gosh, all their time in college, medical school and internship was not wasted.   I must be a genius because I've not had the benefit of their education or training and have been telling people the same thing for years...duh.  It takes two doctors in sessions together and in tag team therapy to come up with that observation.  Oh, and they were talking about only ONE of my children.  I would love to put them in the room with all four sons...at.the.same.time. *smile*

I'm typing this post to say I missed Tracey's Thursday's Theme.  Shoot!  I never miss it, but my camera didn't seem to capture "pretty" through my eyes this week.  But Tracey's certainly did...go see and give your congratulations.

My other excuse is I am working diligently on my new blog...and eating candy while watching TV.  You didn't think I'd let the boys have all the fun, did you?

Question:  Are you having any difficulty or slowness in loading my blog?  If so, would you please leave me a note in comments.  Thanks so much.

A (ADHD, Autism) B (Bipolar Disorder) C's (Cerebral Palsy) Of Moving A Family

Our family is in the process of a move which is a difficult task for the typical family.  Our family falls within the atypical category by a landslide.  How many families do you know who live with autism (Asperger's Syndrome and PDD NOS), attention deficit hyperactivity disorder, bipolar disorder and cerebral palsy along with asthma, various allergies, vision difficulties and more all wrapped up into three darling boys.  (That list does not include the parental oddities.)  Thought so.  We are having a ball...not.

Up to this point the boys' reactions to the move have been varied and pronounced, and the mood changes from moment to moment.  I do not have a clue what mood the boys will exhibit when they awaken each morning.  I have switched back to real coffee...the stuff with caffeine...because I need it for the mornings.  Some of the negative verbal feedback from the boys regarding the move:

• I'm staying right here and living in the woods.  I don't need a house or a mom or a dad.
• I'm calling Grandmama.
• I'm calling Granddaddy Ed.
• I'm moving in with A. (Their 26 year old brother who, by the way, lives in the city to which we are moving.)
• You are just mean parents.
• Who will take care of B.J.'s horses when she has to go out of town?
• How will I find my socks?  (Do not ask me why socks are harder to find in a different house.)
• Ursula doesn't want to move. (She's our dog.)
• I don't want my own room.
• There is no water in _______. (Referring to rivers and creeks because we live next to both here in the mountains.)
• I can't pee outside if I live in a neighborhood.
• I can't take my clothes off outside if we live in a neighborhood.
• There are not enough trees there.
• I don't want to move because I don't want to move.

In a later post I will share the positive verbal responses as the boys are playing Dr. Jekyll-Mr. Hyde with us.  In the meantime here are a few photos of the new, horrid home where we will be forcing the boys to live.

It's not the outward appearance of a house I would build if I had the time and money, but it does have four bedrooms, two and one-half baths, a living room, dining room, family room, great kitchen with a bay window breakfast nook and a seating area in front of  a fireplace.  The fireplace is open between the family room and sitting area of the kitchen.  It has a stairway from the front foyer and one from the kitchen leading upstairs to the bedrooms.  I love that you do not have to go to the front of the house to walk upstairs.  It means when I am in the kitchen, I can get upstairs quicker to investigate all the mysterious sounds.

The house is one of the few on the market in the suburbs which actually has a yard.  The yard is nicely landscaped with a sprinkler system.  The back yard is terraced.  There is a spacious deck.  The house sits on a hill with a deeply sloping front yard...can't you see it now...boys rolling down into the street below...bikes screeching into the street below...can't you imagine a Slip'n Slide on the front lawn?  Thank goodness the house sits on a cul-de-sac with minimum traffic.

Yeah, it is sheer torture indeed that we are forcing the boys to live in such conditions.  Just call us terrible parents.  Did I mention the boys will each have their own bedroom?  That they have the choice of what color we paint their individual rooms?  That there is a humongous neighborhood pool?  That there are several green areas designated for play, walking and exploration?   How could we be so cruel as to force all of this upon them?  I expect child protective services to show up on our doorsteps any day now.

Seriously, there are many issues to deal with when moving children who do not adapt well to change because they are wired differently from the majority.   I would like to explore those issues in later posts...in between packing boxes and a little sleep...and maybe a meal or two.

Please feel free to offer your moving advice.   All help is greatly appreciated...greatly appreciated...and greatly needed.

Kids Languages

Kids languages - expressive and receptive - can sometimes be quite confused.  Sprinkle the children with combinations of ADHD, Asperger's Syndrome, Bipolar Disorder and Cerebral Palsy and confusion is certain...a parent may as well learn to laugh at it...

By most standards I'm a good communicator.   For example, when I say "No!" the family knows I mean no.  As in No!  I will not go into the woods and stay the night in a flimsy nylon tent with three little boys and a grown man and wonder what is going to bite my butt when I have to go out and pee in the woods in the middle of the night.

I'm also a good listener...I hear the real message.  A boy standing in the middle of my kitchen whining "I'm so huuunnnguhrrrreeeee" does not mean please prepare for me a nutritious meal.  He means I want to eat a dozen chocolate chip M&M cookies NOW.

Finally, I am a fairly capable interpreter.  Mac and Wil each have a speech impediment which no speech-language pathologist has been able to defeat.   Unfortunately, Wil learned to speak exactly like Mac, and Mac cannot pronounce the digraph "ar" properly.  It has always been "aw", as in fawmer's mawket (farmer's market), cawt (cart)...you get the audio of this, right?  The speech problem also extends into some, not all, of  his "al" pronunciations with the result being words such as mart (mawt) and malt (mawt) sound exactly the same coming from Mac's mouth.  Fast forward...

It is bedtime, and we are having Bible study with the boys in their shared bedroom.  The topic of the evening is forgiveness,  and after the scripture reading and story there was, of course, discussion.  Kids love a good discussion if it prolongs the physical act of crawling into bed and lying quietly.  Mac speaks up and says "Like Wil should forgive me for hitting him in the head with the baseball bat because I didn't mean to do it?"  So we acknowledge that yes, it was an accident because Wil wasn't paying attention and walked up behind Mac as he began his swing.  So Wil should forgive Mac.  Lee joins in as other scenarios are shared, more drawn out discussions followed, and prayers are said.  Everyone is over the fault issue...everything is all lollipops and gumdrops...so we think.

As C and I are tucking the boys into bed  Wil loudly proclaims "Mac, it's your fawt!" 

Mac snaps back "Is not!  It's your fawt."

Wil blurts back "Your fawt!"

Mac again snaps "Is not!  I don't even smell anything."

Then silence.  Wil's expression shows that he is completely lost.  And honestly, C and I were lost at this point.   What does not smelling anything have to do with determination of fault?  So we ask  "Mac, why are you talking about smell?  What does that have to do with anything?"

With a most exasperated expression and a pronounced sigh Mac replies, "Because Wil said I fawted, and I did not fawt!"

Seems fault is to fawt as fawt is to fart...

If you have any kids languages stories to share leave a link in the comments so that everyone may visit and read.  I would love  to read what your kids have to say.

The Gift of Motherhood

The boys are sleeping, snuggled in their beds with dreams of planes, trains and race cars.  The husband is traveling, worlds apart from his family and home.  The woman is sitting...alone...just sitting...

A day began, a day ended.  Somewhere in between words were spoken, things happened, time passed... and the woman ponders a blur of events, a heart full of memories.  Did she mother?  Did she?  She searches the bottomless gut of her soul, but she is unsure of the answer.  Did she mother?

She remembers ducking the objects that flew, ignoring the words that hurt, dodging the punches that came.   She remembers the small body that trembled, the eyes that pleaded, the mind that anguished, the arms that reached.  But did she mother?

She remembers stretching the limbs of constriction, hearing the cries of frustration, lifting the body that stumbled.  She remembers the hands that tried, the thoughts that withered, the feet that faltered, the arms that reached.  But did she mother?

She remembers stroking the face that ignored, asking the unanswered questions, explaining the readily known.  She remembers the lips that mumbled, the being that recoiled, the stare that withheld, the arms that did not reach.  But did she mother?

She remembers caressing the babies that came, loving each new life, accepting the responsible role.  She remembers the joy that consumed, the purpose that revealed, the spirit that encompassed, the arms that received.

She remembers...God gave her the gift of motherhood.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Happy Mothers Day

A blog blast -What Makes You A Mother- at The Parent Bloggers Network in honor of the launching of Light Iris

I am A Good Mother

Tributes for Mothers:  A (re) definition

  Thanks Jen!

Adjective Children

A child

is

not an adjective --

bipolar child

ADHD child

asperger's syndrome child

cerebral palsy child

adopted child --

a child

is

a child.

just my thoughts, Melody

Holding Tightly to the Present

The night is quiet.  The night is insufficient.

The past two weeks have been exhausting to say the least.  My body aches seeing the internal turmoil, chaos expressed outwardly by my child.  My twelve year old son is having such a difficult time.  He became accustomed to a newfound peace..."Mom, I feel peaceful."  Strange words from the lips of a child dealing with bipolar disorder.  Yet a few months ago we found THE medication for him and for the first time in a lifetime, he felt peace within.  He seems to have lost it.  A kiss and band-aid will not make it better.  The helplessness of being mom is overtaking me.  Peace has abandoned me as well.

Doctors can only explain that he very quickly develops a tolerance for medications which renders them virtually ineffective...so it is a frequent game of "up the dosage" or "try new medications".  Toying with my child's brain, his too small body.  I spend many moments just crying.  I hate giving him drugs...but I cannot bear the thought of losing him to suicide or a crazed act of mania.  There is a purpose to all of this, and it had better be a good one.  I love him with all that is me.

Parenting our children with special purposes (needs) is really, really hard.  Some days the humor just does not come...I am so tired.  And just as the moment approaches when my soul is about to scream "STOP IT GOD!!  NO!! NO MORE!!  I CANNOT DO THIS!!"   A young head leans upon my shoulder, a small arm embraces me, and the words "I love you, mom" are spoken...yes, I can do this...because I have to...because I want to...because there is incredible strength in love. 

Anyone who has been reading, I apologize for the delay in continuing the boys stories of adoption.  But I find it difficult to tell the stories of the past when I need to hold so tightly to the present...the present as in the gift...the gift of my son.  If you come looking for me and do not find me here, perhaps you should look upstairs where I'll be snuggled with my precious boys...talking...or laughing...or reading a book...or listening to their breaths...and thanking God for each and every beat of their hearts.

Good Thing I Love Him

"Did you pick up those prescriptions on your way home from work?"

"No, didn't you get them when you took the boys to the library?"

"No!  Do you realize the pharmacy is now closed and Lee will NOT have his medications tonight OR tomorrow morning and that complete and total hell will break loose and it will be a miracle if any of us are still standing when you arrive home from work tomorrow?"

"You could pick the prescriptions up in the morning."

"Yes, yes I could.  But first I will have to chase down, wrangle, hug-grip and drag Lee in his bipolar-ADHD combined fizz state to the car AFTER I have awakened, fed and dressed everyone which includes a nine year old boy living with Asperger's Syndrome who is most likely out there somewhere and an extremely stubborn eight year old boy living with cerebral palsy who has yet to regain his full leg strength from surgery and falls over when tapped AND myself  (have you ever dressed while chasing or holding a bipolar/ADHD non-medicated 11 year old boy?) who will be totally hung over from the bottle of wine I am about to drink...and...

Do any of you and your husbands or significant others have moments of totally incomplete communication?

Stress, Alphabet of Diagnoses and Footman, My Carriage Please

The day feels as though it is squeezing me, holding me rigid and placing its hand securely over my mouth.  I recognize the symptoms, stress.

As much as I feel my life is blessed, charmed even, I am not really a princess and my fairy godmother does not appear, wave her magic wand and away I ride with Prince Charming.  I do live with Prince Charming, but that's another story.

The realization of not being able to do all that should be done, needs to be done, wants to be done, could be done...well, you understand how life runs a person ragged.  The gripping desire to do all that is inhumanly humanly possible to ensure that my sons lives have the best possible outcomes.  Bipolar disorder, attention deficit disorder, cerebral palsy, autism, Asperger's Syndrome, asthma, allergies, more surgeries to come...I just pray for the grace to keep up the pace.  I pray my husband and I do not neglect each other or ourselves.

I am not alone in feeling that my head is spinning to a far off galaxy and this recent article reminds me of the many families dealing with the same issues.  My husband and I went through so many trials, tribulations, and web searches for information before we found the doctors, psychiatrist and psychologist who gave us the correct diagnoses, medications, and therapies...the individual answers for our sons.  At least we found the answers.

Those of you dealing with similar difficulties, remember we are human and it is only through an amazing grace that everything will turn out just fine.  Despite the difficulties with which my children live, they are healthy and happy.  I should relax. 

Thanks for listening.  I have to run now.  I'm going to tickle my boys until they roll in the floor shrieking in breathless laughter, and the best part is they'll tickle me right back.