"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Wednesday, May 22, 2013

Releasing the Butterflies. Firefly...

Homeschooling Hearts & Minds

"Butterflies are self-propelled flowers."  R. H. Heinlein


In the beginning, there was a little baby girl, born less than a week before Christmas.  She had a full head of black hair, and she liked to sleep.  A lot.

Our Firefly came into the world quickly and quietly, with no hint of the chaos that was to rule our lives for the next ten years.  It has been a journey.  A long, stressful, tough journey.  A ten-year, on-going journey that we never expected.

Year One:  Sickness

Firefly spent her first year back and forth to doctors' offices:  pediatrician, neurologist, opthamologist, ENT, allergist, pulmonologist, neurosurgeon, geneticist.

She had bouts of RSV, asthma, eczema, ear infections, surgeries to place ear tubes, remove adenoids, open closed tear ducts, CT scans, X-rays, sweat tests.

BUT...


She was adorable, petite, precocious, and hungry.  Always hungry!  She was quick to crawl and stand and walk--by ten months.  She loved her big sister and was quick to smile.

Year Two:  Terrible Twos with a Twist

Some sickness, continued.  Different specialists and different procedures.  Add endocrinology and orthopedics to the mix, as well as some physical therapy.

And, then, sometime during that year, she discovered the tantrum.  By the time she was two, we had eliminated red food coloring from her diet and had her in two different child psychologists' offices, sure that something was "wrong" with her.

I'm pretty sure both of them thought we were crazy.

BUT...


She went from walking to running.  Fast.  She was talking in complete sentences by 18 months, and potty-trained just after two years old.  She was smart and funny and still, quick to smile.

Year Three:  More of the Same

Or actually, more of the worse.  More tantrums.  More often.  More violence.  More volume.  More destruction.  More unrealistic expectations.  More crying into pillows at night (this one is me, not her).

More wondering about my ability to parent.

More uncertainty.

More arguments.

More specialists.  Fewer answers.

BUT...


She was still learning new things every day.  She was athletic, but still tiny.  She was incredibly strong. She loved to sing and pretend to read her books.  She could take amazing care of her baby dolls.

Year Four:  Throwing Up Our Hands

This is the year I think we officially tried it all.  Massage, chiropractors, more psychologists, holistic doctors.

Nothing was helping, and we were being held hostage by our four year-old.  I had to physically restrain her at the park one day, in front of all of our friends.  She literally screamed right into a police officer's face one day when he was checking on her because I know he thought I was hurting her.

I. did. not. know. what. else. to. do.  And by this time, I thought I was crazy.

BUT...

She was a charmer.  She could handle anything physical that would be a challenge.  She was competitive, but incredibly nurturing.  She was a joy to be around when she was happy.

Year Five:  Still Searching

And finally, a diagnosis.  Sensory Processing Disorder--big time.  Generalized Anxiety Disorder.  A "to-be-named-later" chemical disorder.

Several weeks beating myself up until I finally agreed with medication, which made a world of difference.

I dropped my five year-old off at kindergarten and she had her beautiful smile on her face--which I hadn't seen in weeks.

The diagnosis brought relief and heartbreak, but it didn't "fix" her.  We still had an over-sensitive, bossy  kiddo who could throw some monster tantrums, and who did--daily.  They just didn't last as long.

BUT...

She learned how to read.  She could hold it together at school.  She made friends easily (even if she didn't know any of their names!)  She lived larger than life.

Years Six, Seven, Eight and Nine:  Treading Water

Occupational Therapy, Psychology, Psychiatry, Counseling, Speech Therapy, 504s, Homeschooling.  We've tried so many, many things to try to help Firefly (and ourselves) navigate through this life we lead.  Three steps forward, four steps back.  Good days and bad ones, and really, really, "I-can't-do-this-one-more-day" horrific ones.

BUT...


She grew (a little bit).  She connected with other kids.  She developed interests and abilities we never would have thought of.  She made a beautiful relationship with God.  She loves animals, and babies, and other related "cute" things.

Year Ten:  Where We Are Now

We have a daughter with at least two, and possibly more diagnoses.  We have a daughter who is on medication every day, and who we still traipse back and forth to counseling and psychiatry appointments.  We have a standing email conversation with the OT.  I know terms I never would have thought I could pronounce, and know the ins and outs of procedures at the Children's Hospital very, very well.

BUT...

She is healthy.  She is alive.  She is thriving.  SHE is so much more than her diagnosis.  My problem is that I forget to see that, and because of that I am so thankful to Susan for starting this thread.

I see the struggles over math flashcards.  I forget to see that, after a year of working on them, she knows her multiplication facts.

I see the child who refuses to dress in the morning in a timely manner.  I forget to see that she CAN now get dressed--on her own--without a falling-down one hour tantrum.

I see the writhing on the ground when her nails need to be cut.  I forget to see that she is not screaming or ripping out her hair when I do have to cut those nails.

I see her being bossy.  I forget to see that she is trying her very best to control something in her environment, because unpredictability = terror for her.

I see uncooperative, slow, cranky, and irritable.  I forget to see spunky, strong, independent, and amazing.


Because she is amazing.  She is fierce.  She is hilarious.  She is sweet and funny and courageous.  She loves life, loves her friends, loves her family, and loves God.  She has a gift for soccer, and a gift for caring.

And she has a bravery that I will never come close to achieving myself.

God gave Firefly and I to each other for a reason.  I don't know why He chose me for her, but I'm learning why He chose her for me.

She has taught me patience.

She has taught me faith.

She has taught me to laugh, and to cry, and to lean on my husband, and my Father.

She has taught me that butterflies come in all sizes and shapes and colors, and that they work on their own time schedule.  While the caterpillar may be slow, uncooperative, clumsy, or in any other way, "not what we had planned", the butterfly that emerges is always a beautiful work of art.

Join some of my friends as they celebrate their butterflies:


Susan
Hold Onto Your Butterflies, but not too tightly

Chareen
Anticipating the Butterfly



1 comment:

  1. What an exceptional girl. Thank you for transparency and heartfelt words.

    ReplyDelete

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