Courage & Work

"I tell you, my friend, all happiness depends on courage and work. I have had many periods of wretchedness, but with energy, and above all, with illusions, I pulled through them all. That is why I still hope, and hope much."--Honore de Balzac, letter to friend Laurent-Jan, December 10, 1849, in The Works of Honore de Balzac, Volume 20, translated by Katharine Prescott Wormeley (1899)

"The Moon"

I went to a weekend meditation retreat this weekend with Karen Maezen Miller!  I feel as though my cup has been refilled.  I've refueled.  I feel wonderful.  This passage has stuck with me so I felt I should share it here.

Transcribed talk by Dogen Zengi : : The Moon

"Whether we see a crescent moon or a half moon, in any of the phases of the moon before it is full, is anything truly lacking?" Maezumi said in the talk.  "Perhaps you are more logical than me," he laughed, "and you don't wait for the day your life will be full!"

Then Karen Maezen Miller shared a story of the girl and the moon in her new book "Paradise in Plain Sight".

reflecting light.  Only our perspective changes.  We rob ourselves when we mistake the unreal for the real.  

Your heart is always whole, just as the moon is always full.  Your life is always complete.  You just don't see it that way.

There is a pattern to it all.  A precise and invisible orbit that brings the full moon around again without fail.

Mama Bird, Bird by Bird

With permission from the Mama Bird, I have posted below her talk at last night's Reelabilities Film Festival.   I had tears many times throughout the films shown last night, and none of my mommy warriors will ever want to sit next to me for movie time ever again.  But the really moving part of the night was Amy's powerful words.  Not a dry eye in the house so grab a tissue.  I will let them speak for themself.  Mama Bird Amy, you are strong and soft, courageous and beautiful,  you have such love in your heart & you sparkled and shined last night.  What an inspiration to everyone!

"Thank you all for coming to this important program.   It is so nice to see such a great turnout.  My name is Amy.  I have three children, Jackson, Noah and Lily.  My oldest son, Jack as we call him, suffered a birth injury which resulted in significant cognitive deficits, some weak gross and fine motor skills and some social and behavioral issues as well, so when it comes to special needs, we pretty much run the gamut. 

When Andy first asked me to speak at today’s film festival about my experiences being the mother of a child with special needs my mind began to race.  There are so many things I could say.  So many things that I want to say, so many things that I want to put out there.  

I thought about speaking about how at the moment you realize your child has a disability you begin what I think can best be described as a grieving process.  

·       You grieve the typical child you have lost.   Generally, when you find out you’re expecting a baby or when you hold a newborn-- your newborn-- the world is full of possibility—  You look at a sonogram picture or look into the squinting eyes of your brand new baby and you think “who are you little one?”  Maybe someday you will be a doctor or a lawyer;  Maybe you will one day cure cancer.  Maybe you’ll be an artist—a poet or a dancer.  The world is yours.  But the instant you find out your child has a disability, whether that be when your child is still in utero or shortly after his birth, as was my situation, or when your child is two years old—whenever that moment occurs,  your previously held dreams begin to crumble.  Suddenly you enter survival mode and your dreams become much much more simple.  I hope my child will walk one day.  I dream that my child will speak one day.  I pray my child will be able to make a friend.  The grief for the child and the dreams you lost is real and it is unrelenting. 

I thought also about speaking about the loneliness, isolation and heartbreak that often go hand in hand with being a child with a disability and being the parent of that child.

·       Often when I watch my son clap compulsively or say inappropriate things or ask a question for the 25^th time in two hours, I think about what his life will be as he grows and becomes more independent.  I fear bullies and their cruelty.   The need to protect Jack from the cold hard world is almost primal.  I will protect him, I have often thought.  I will take care of him.  I won’t let him be hurt.  But I know I can’t do that forever.  I won’t be here forever.  And the thought of that is simply terrifying.

·        Once I get past fear, though, there is another emotion lurking beneath the surface and it is as difficult to experience as fear.  It is sadness.   My son is ten years old and not since he was a toddler has he been invited on a play date at the home of a typical child.  Not since he was 3 has he been invited, on his own, to the birthday party of one of his neurotypical classmates.  He is often invited to tag along with his brother on play dates or to birthday parties and he has a group of children with disabilities who he counts as his friends. I have friends that include him in family gatherings and my husband’s and my family certainly welcome him.  He is not entirely alone—yet, the fact remains that a huge percentage of the population doesn’t see him.  They don’t get past the stemming.  They don’t take the time to wait for him to answer a question.  Their face grimaces slightly when they attempt to talk to him and realize that he isn’t your average ten year old.  They don’t know about his sense of humor, they know nothing about his love of baseball or how he takes tae kwon do or that he loves music.  A huge percentage of the population pretends he doesn’t exist.  Looks the other way, just as the woman at the bus stop did in the film we just saw about Down Syndrome.   My son’s presence makes some people uncomfortable.  Visibly and clearly uncomfortable.  If I am to speak honestly, I will confess that before I had Jack, I was guilty of this.  I don’t believe I ever took time and stopped to really see the disabled young man who bags my groceries, wheelchair bound children or adults that passed me at the mall weren’t on my radar screen, I often looked at inconsolable tantruming children with impatience—and boy did I judge their parents.  I thought they were incapable  “I will do such a better job parenting and my kids will never act like that.”  I used to think that.  I don’t judge any parent or child anymore.   Not anymore.  Never again. 

I thought about speaking about my worry about what will happen as Jack ages.  And what will happen as his siblings grow and potentially move away.  Will he have a life of his own?  I think about how my husband, Jonathan, and I currently have an estate plan that includes “living forever” because we don’t know who would be willing and able to accept the challenge and stress of caring for him in the event we aren’t here to do it.   

I thought about talking about the impact my son, Jack, has on the rest of our family. 

·       My husband and I are divorce attorneys by profession.  If fifty percent of marriages end in divorce --Some studies have shown that the number rises to between 80 and 90 percent of marriages which include a child with special needs.  As I walk the walk of having a disabled child, I see why this might be the case.  Raising a child with significant needs is exhausting.  It can be emotionally, financially, physically and intellectually draining.   Sometimes at the end of the day, my husband and I look at each other and realize we just have nothing more to give.  Sometimes our tanks are so empty it takes everything we have just to say goodnight to each other.  Sometimes our anger and frustration about our situation—Jack’s situation-- directs itself inappropriately toward the other.  Compounding the issue is that it is difficult to find respite because of the challenges involved in caring for our son.  There is precious little time to ourselves.  Precious little time to remember that before we were Jack’s parents, we were carefree. 

·       As the mother of two children without special needs, I feel a huge sense of guilt for the energy it takes to parent their sibling.  I notice how they have learned to clear the room or busy themselves with a toy when Jack has a breakdown and their father and I attempt to address the problem.  I know they each feel a sense of responsibility to their brother and although I think that is amazing to watch, I think about what a burden that is to them.  Being the sibling to a special needs child is not easy.  It changes who you are.  It places firmly upon your shoulders the heaviness of responsibility and worry before you are old enough to comprehend what those are.

So I had all these thoughts about what to speak about.  And then as I reviewed them in my mind I realized that everything I thought to speak about involved the difficult aspects of being the parent of a special needs child—There is grief, there is fear, sadness, worry, exhaustion.  There is conflict and there is difficulty.   And although these things are all real and important and worth speaking about—they really are only part of the story.  Not even the most important part of the story.  Being the parent of a special needs child is also an amazing privilege which no doubt has enriched my life and it has enriched the lives of our entire family. 

·       Being Jack’s mom has allowed me to gain, suddenly and quickly, something that I didn’t have before and something that, in my humble opinion, an alarming percentage of the population lacks—perspective.  Suddenly I am able to evaluate the importance of things at a rapid clip.  Suddenly whether my children have any athletic talent or make it into the Ivy League matters not at all.  What matters is that my children are able to find happiness.  What matters is that they have friends.  That they have a life that fulfills them.  The details suddenly became unimportant. 

·       Being Jack’s mom has made me realize that you should never ever allow anyone to set limits for you.  Doctors told us initially that Jack would never walk or talk or feed himself.  Jack didn’t know that this was his prognosis and he has achieved every one of those milestones and then some.  He works so hard to perform the tasks so many of us take for granted.  Every time I worry that Jack has reached a plateau in his development, he moves upward.  I have had the absolute pleasure of watching Jack learn and grow and prove his naysayers wrong.  He is the epitome of determination and strength.  He is an inspiration.

·       Being Jack’s mom makes me remember to SLOW down and celebrate the small moments.  In the rushed world we live in, it is easy to concentrate so hard on getting to our destination that we forget that life is really about the journey.  You can’t rush Jack. You can’t get him out of the house quickly, can’t force your sense of time on him.  He does things on his own timetable.  At age 2, he could only say one word.  At age 3, he probably had close to 50 words.  By 4, he had so many words we couldn’t count them.  Now as I watch Jack learn to read—albeit at a very slow pace—I realize how much we should celebrate these small milestones  and victories.    What is life, really, but a series of steps—some big and some small?  All are worthy of being celebrated.

·       Being Jack’s mom has allowed me to find the most incredible network of women who also parent special children.  Women who have become my mommy soul mates.  There are some people who just get it and had I not had Jack, I might not have forged such strong friendships with these truly amazing people.  For them, I am thankful beyond words.

·       Although I spoke earlier of how parenting a special needs child can weaken a marriage and how difficult it can be to have a sibling with special needs, I think the opposite can also hold true.   My neurotypical children are compassionate.  They see people with special needs.  I mean, really truly see them.  They are kind.  They are not frightened by disabilities.  They may be curious, but they understand.  And as I watch my husband parent Jack, I fall in love with him over and over again.  He has the patience of Job.  He is strongly gentle.  And gently strong.  

  

So in the end, I suppose the message I want to leave you with tonight is that although being the parent of a child with special needs is extraordinarily difficult and at times can be heartbreaking, being the mother of a special needs child has also enriched my life beyond measure.   I believe there is a reason this amazing little boy entered my life.   I will be forever thankful our souls found each other. "

Calm Heart

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work.  It means to be in the midst of those things and still be calm in your heart.”

Just like the bird's nest, we show our journey- what we see and carry on any given day. Its symbolic of all our trials and error, challenges to overcome, little victories and birdsongs of joy. Rebuilding part of our bird's nest  is necessary for us to be able to carry on, allowing us to feel safe and secure. Construction started this week!  Here is the first stage of the ramp being built leading into Lew's room. It is going to become a launching pad for LJ to fly!  

Ramp Visuals:

Nate and Annie, inspecting the work…there will be a covered portico
so LJ doesn't melt from the elements given inclement weather;)

Footings for concrete ramp foundation 

Leading to our parking pad, the gate will be replaced.  The bus
picks LJ up just thru that opening you see.

Feed Your Soul

Good Advice

Inspiring Me Today

Words don't come easily.  Lewis continues to work so hard in speech therapy.  A few weeks ago, he reduced me to tears when he approximated the words and I had wished and held out hope to hear someday. And it happened.  Out of the blue.  We were just hanging out at home playing with his toys.

"aaayyy. PAUSE. uuuhhh. PAUSE. ooooo"

I love you.

Sweet, sweet music to my ears. Three words and they brought tears to my eyes.  Still does each time he tries to perfect the sounds and vocalizations of "I love you." And he's been practicing every day.  My heart is so happy.

He's working hard at other words too, like "hi", "eat", "on", "up", "belly", "ear", "eye" and "arm".  But clearly the I love you's are the ones that make us feel so wonderful.

Song in My Heart

If I could carry I tune, I would possibly write a song for both my boys.  But I don't think I would muster the courage to post it on YouTube.  However, this mama did here and it is truly special.  Is there anything more true, more relevant, more important on this mother's day than remembering what a gift our children are to us? Happy Mother's Day to each mama and mom figure out there!

Inspiring Me Today

This is a video of such an inspiring, young woman who is studying ASL with fervor. It is such a cool thing. To think, with LJ's modified sign language we will one day have him signing/singing songs such as this one...if not verbally. It would be nice to diversify his repertoire of songs;)    LJ is recovering well from his surgery. The first few days were rough as far as pain management was concerned. Once you tried to move him, he winced in pain. At points he would lay in bed and just wimper. Hardest thing on Earth for a parent to witness! But today he is feeling better! After all, he got to have his first bath last night;) Nate asked me if LJ was gonna have anymore surgeries coming up. He's been very sweet and attentive to LJ. And he is even advocating for LJ (as much as himself. lol) a trip to the toy store so HE and LJ can get a BIG toy on the next, potential surgery date. I assured him that this go-round on the surgery front seems to have been "Operation Success" so I wasn't anticipating any more on the horizon. End of story.

Be Kind

"when given the choice between being right or being kind, choose kind."

- Dr. Wayne W. Dyer

Live In Joy

Sidewalk Cracks

I am thinking about sidewalk cracks. If you live in a place where there are sidewalks you will walk across the cracks many times. And perhaps, once in awhile when you are not thinking about where you are going, or what he or she said, or how you wish things were different, you will notice that they are rarely empty.

The cracks, the broken parts of the well-laid path are in fact opportune gardens in which wildflowers take root.

: :   L a u r a   H eg f i e l d   : :

....still waiting to hear about LJ's EEG test results.  I've called twice, and emailed once.  They told me they allow 7 business days to read the test! The opthalmologist said his eyes look healthy.

Chase Your Dreams

Dear Teacher :: One Word

Too cool not to re-post this.  Its an email Ali Edwards received from a student.  She teaches workshops about writing, journaling & scrapbooking and this particular one is called One Little Word. 

dear teacher:
i apologize for not doing my homework.
i don’t know what to say. i mean. well.
it is kind of your fault.
you had me pick a word. just one little word.
so i did.
i picked
now.

it is a very tiny word, only three letters.
but see
well
i sort of got too busy living my word to do my homework.
that word.
now.
you can’t always predict what’s going to happen with her in the mix.
and
well
sometimes my homework for olw, well,
it didn’t get on the list
the now
live life list.

so my dog didn’t eat my homework.
i don’t have a dog.
i just didn’t do it.
because i was busy with that word of mine.
i took it on a vacation even.
we’ve been busy together, me and now.

me and my word
well it’s an every day thing.
we are kind of bffs and all.
but last night
i stayed up till 2am
because i couldn’t take it anymore,
me and now,
we wanted alone time together.
so i made the time in the inky quiet black of night.

i sat and listened to 4 months worth of videos
printed out 4 months of handouts and transcripts
jumped without abandon into 4 months of prompts.

and i just wanted to say
you may not see me on the discussion boards
i may not have done my homework on time
but you teach me.
you have changed me.
thank you.

i have a new friend, me and now.
the relationship has changed me
and it is all your fault.
your student

---

Children

Still Climbin'

Mother to Son
Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back.
Don't you set down on the steps.
'Cause you finds it's kinder hard.
Don't you fall now—
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

by Langston Hughes

Play with Your Food

Applesauce is no longer LJ's public enemy #1. He can't get enough of the stuff - as is the case with graham crackers. We're striving for this Bert and Ernie food creation. Isn't it awesome??

Arts and Disability

The Kennedy Center has an annual week-long festival called the "International VSA Festival" spotlighting disabled performers and artists. The MIL (otherwise known as Didi) and I went to see a performance with Gregg Mozgala called "Diagnosis of a Faun" at the Kennedy Center last June, and I was so impressed and inspired by it; but obviously life got in the way of me recapping it for you all.  Amy over at A Life Less Ordinary summed up the performance perfectly so I am not gonna even try. I've taken an excerpt from her blog post with her permission- see below.

Of course the entire time I sat stunned at how awesome this dancer was with CP!! I couldn't help but wonder how my child with the same diagnosis would eventually learn to live with his own set of challenges.  Would LJ walk with forearm crutches or would he be in a wheelchair let alone be able to balance for long enough to pirouette?   I remembered the grim diagnosis that a doctor had given us when LJ was in the NICU those first few months of his life. Where these two people's circumstances drastically different?  I cried tears of pain and joy as I thought my child isn't even able to sit or eat without assistance all wrapped up with Gregg Mozgala's profound performance which gave me hope and optimism.  At any rate, here's the synopsis as told by A Life Less Ordinary:

" Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.


There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.


I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.


My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed. "

I think I should go see the piece again because I really have reached the point of acceptance. LJ has accomplished so much and there are so many opportunities for the future.  At that time last June, it seemed unreal to me that LJ would learn the joys of things like junk food, preschool and the circus. There was still so much pain and heartbreak.  I was not alright with the world.  I could benefit from watching the performance again- this time from a different perspective. It moved me to take that next step, put one foot in front of the other.  If the ballet is ever in your area you should go see it...you will be in awe too!

You Are My I Love You

You are my I love you
by Maryann K. Cusimano

I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake.

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.

Quote of the Day

" I have learned that people will forget what you said,
   People will forget what you did,
   But people will never forget how you made them feel. "

                                :: Maya Angelou ::