A Thought...

  • “Life is a gift, given in trust - like a child.” ~~ Anne Morrow Lindbergh
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  • A mother by birth and adoption sharing - through photography, writing and humor - life with boys, autism, ADHD, bipolar disorder and cerebral palsy. Reminding you that kids with special needs are kids.

Why I Blog...

  • I love my life...really! My "special purpose" sons take me to places daily in my mind and heart that I would have never known existed without them. In sharing photos and a few words from our day to day life, I hope to help you look at your life with humor and with the reality that you do what you can do when you can do it...then you eat chocolate and drink wine...and snap photos...lots of photos.

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Asthma-Allergies

May 02, 2008

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.

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October 23, 2007

Someplace Else

Right now...at this moment...I cannot possibly respond to each comment or email personally. (Wow, the emails.)  Please accept my sincere "thank you" for your words of support, prayer, understanding and "I'm there, too."  You are in my prayers, also.  So many of you deal with much more than I...you are amazing and inspirational.

My family is currently faced with issues and decisions that I never could have imagined.  We are dealing with those.  I'm someplace else.

Bottom line...thank you for caring.

comments are closed...go hug your family

October 20, 2007

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.

Pinkmosaicfabric

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?

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June 09, 2007

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.

Img_5085_024

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.

Img_5081_020_edit

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.

Img_5080_019_edit

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.

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