Triumph!

Ah, today was awesome!  Today my son was running around in the back yard.  Running for Jimmie is a stimming activity.  He is in his own world.  He loves it!  It's a happy stim, but it is a stim none-the-less.  I have seen him grabbed up by his father and whirled around while running and seen a response, laughter, giggles, but as soon as he is put down, he runs again.  I don't mind it.  It just is what it is.  But today, well, today, he was running, and he looked at me from across the yard.  He made firm eye contact.  He smiled.  He ran at me.  He ran to me.  He flung open his arms and threw himself into my waiting arms.  And I saw it coming.  I saw it from the moment his eyes locked mine and that smile spread across his face.  It was brief.  A short hug and back to running.  But my God, it was an awesome moment.

What do we live for but moments like these?  And I appreciate them so much more than the Mom next door.  She gets them all the time.  She cherishes them to be sure.  I don't doubt her motherly love.  But I don't get them all the time.  Well, not from Jimmie.  Charlie makes a game of it.  But Jimmie has never done that.  Ever.

I have never before seen such clarity in his eyes, certainly not combined with purpose and love and joy.  These are things that rarely register on his beautiful face.  I see purpose when he goes after a straw, but I also see that he sees absolutely nothing but that straw.  I am invisible.  Even the drink the straw is in is invisible.  He sees only the straw.  I have seen joy.  He is often happy.  I have seen love, when he happens to find himself looking into my eyes.  But today, all these things combined.

And I swear for that brief moment it took him to cross the yard and hug me, he was a normal 5 year old boy.  No sleepiness in his eyes.  No overly medicated droopiness.  No cognitive disconnect with the world.  He saw me.  He had a purpose to hug me, but he was not blind to the rest of the yard or to his running or to the wind blowing in his face.  He was happy.     He was present.  He was 5.  It was amazing and wonderful.

It makes me want to get him weaned off some of these medications.  I want to see more of that little boy.  I want the seizures to stay at bay.  I want so much...  But I'll take the moments as I get them.  And I will rejoice in them.  And I will cherish them.  And I pray I always remember that moment.

Special Needs Hierarchy?

I just watched a wonderful news story.  It was full of heart and generosity and love and it slightly pissed me off. See it was about a playhouse for children with Down Syndrome, a fun place that advocates for Down kids and provides vestibular stimulation, developmental therapy, and social interaction.  Down kids.  My LGS son doesn't have Down Syndrome.  So he can't come and play in that neat place and meet those neat people and benefit from all they have to offer.  Somehow that just doesn't really seem fair.

Don't get me wrong.  I'm all for advocating for children with Down Syndrome and for helping them to reach their full potential.  I believe with all my heart they are wonderful children who deserve the very best we all have to offer them.  My cousin Joe Joe had Down Syndrome.  He was a loving man child, who remained mostly non-verbal his entire life.  He could say a few words.  His name.  My name, which came out Gunna.  Hot Dog.  Ice Tea.  Mom.  Dad.  Bubba for brother.  He had a great sense of humor.  Once when my father was chasing my mother with the running hose, she screamed for help from Joe Joe.  He was her cousin as well.  Her uncle was married to my father's sister... but let us save our convoluted family tree or ring or whatever it really turns out to be for another time.  Joe Joe stood and stared at her wordlessly for a second.  Then he did his best body builder pose and growled like the Incredible Hulk.  My father had caught my mother and was dragging her back to the hose, but as Joe transformed into the Hulk, my father dropped my mother in a fit of laughter, and Mama escaped into the house laughing and singing her thanks for Joe's brave rescue of her.  Joe Joe played with my sister and I daily as children.  He is ever-present in my early memories.  I spent my life defending him from bullies on the bus, and I openly hugged and kissed him in view of my friends and told them all to leave my boy alone.  I loved him as if he were a brother, a friend.  I only ever wanted the best for him.  And he deserved so much more than he ever received.

But Down Syndrome is not exactly rare. The prevalence is 1 in 800 live births or 1 in 971 children aged 0 to 19 (http://www.medicalnewstoday.com/releases/172493.php).  Infantile Spasms, of which 49% of LGS cases began as and which is how Jimmie's epilepsy began, has a prevalence of 1 in 2,000 to 4,000 of live births (http://pediatricneurology.com/infantil.htm).  That is a staggering difference.  Anywhere to half or a quarter the total number of cases.  I daresay almost everyone recognizes a child with Down Syndrome as a child with Down Syndrome.  They would never say that Down Syndrome was a case of colic.  Certainly no medical professional would dismiss Down Syndrome as Colic.  Ask an IS parent how many times that has happened to their child.  Sad.

My point is I don't think that special needs groups should splinter like this.  You shouldn't have to have Down Syndrome to be allowed into Gigi's Playhouse.  You should just have a need for a place like Gigi's playhouse.  There should be no hierarchy.

A little known secret...shhhhhh

Ha!  That's a joke.  I'm an open book.

I know a lot of special needs moms online.  I know a great many of their kids are preemies.  I know that preemies have greater survival rates than ever before.  Back in the day, when I was born, preemies and not that much premature at that simply died.  This survival rate seems to bring a great deal of live long health problems for the children surviving though.  Included are hydrocephalus, cerebral palsy, seizures, heart issues, lung issues.  You name it.  And first time parents of preemies can be terrified of having a second child.  It's natural.

Jimmie is not a preemie.  He was due on July 3, 2006.  He was born via emergency c-section on June 23, 2006 due to my sudden loss of amniotic fluid.  My water didn't break.  It was just gone.  Overnight.  We induced labor, but Jimmie was sunny side up and not turning over for anything...and then his heart rate dropped.  So c-section it was.  He was small.  Apparently I have a small uterus.  A fact commented on both times I gave birth by the operating doctors.  So he was small.  6 lbs 1/2 oz.  But he was technically term.

I, on the otherhand, am a preemie.  I was due May 10, 1968.  My father was going to be 33 years old on March 29, 1968, and my mother teased him mercilessly about being 33 before he was a father.  But then I stopped moving.  M mother went to the doctor in a panic.  Apparently I was completely tangled in the umbilical chord.  There was no choice but to deliver me, immediately.   I was born March 26, 1968.  Of course the first words out of my father's mouth to my mother were, "I'm only 32."

I was baptized by the nurse, who was also Catholic.  I weighed 3 lbs 11oz..  I had highline, which is underdeveloped lungs.  In years subsequent to my birth, preemies with highline were intubated and given oxygen.  I was simply placed in an incubator.  My lungs would either develop or I would die.  I also had jaundice.  The Kennedy baby died from similar issues due to prematurity just a few years prior.  I was by no means considered healthy.

Appetite has never been a problem.  I ate like a horse out the gate.  I gained enough weight in less than a month to be sent home.  My lungs developed fine.  I have no heart problems.  I have no lung problems.  Lord knows, I have no problem keeping on weight.  I have never suffered any ill effects as a result of my premature birth.  None.

But don't think they expected me to live.  Preemies just didn't.  I did.  I am blessed.

I guess I would just like those parents who are afraid of having that second child to remember that things happen.  Just because one child is born prematurely and has problems does not mean the second will...and even if the child is born prematurely, it doesn't mean there will be problems.  Some of us are just fine.

Turning down invitations

You know what sucks?  Turning down an invitation.  I love people.  I love parties.  My husband's best friend is married to a lovely girl.  He is always asking us to join them for dinner or whatever.  It's obvious he wants for this best friend relationship to expand to the married couple friends status.  He tries.  My husband is not as social as I am.  He is perfectly happy having a best friend that he hangs out with independently and never having me socialize with his wife...or rarely, but he understands his friend's desire.  The most recent attempt however was an impossible one.  Mike invited David to play golf on Saturday morning.  And following golf, Gloria's brother (Mike's wife) was having a party.  An annual thing.  They have a pond on their property.  They play in the water, swimming tubing,  bouncy things.  They have a cookout.  They have a few beers and a few laughs.  It sounds like a great time.  Granted we don't really know Gloria's brother or Gloria's brother's family, but Mike invited us and told us to bring the boys.  Here's the thing:  we can't bring the boys.  Charlie would have wonderful time.  Jimmie would need to be either held in our lap the entire time, or restrained in some other manner, to prevent his walking full on into the pond and drowning.  We would never be able to relax and enjoy the party.  And getting a babysitter on such short notice wouldn't have been impossible, but would have been expensive.   Now here's the thing: we could absolutely take Jimmie out to a restaurant or to park (provided it is enclosed), but there is no way we can take him to a stranger's unenclosed yard with a pond.  It would be miserable.  So we come off like people who never want to do anything.  We do.  We would love to spend more time with this couple.   But this was just an impossible situation.  So what do you do?

Prince Jimmie (or it's okay to be non-verbal)

I shared a story I tell Jimmie recently with another IS mommy.  She was upset that her child was showing signs of distress and because he is non-verbal and unable to communicate the problem she felt rather like she was floundering, not helping him, not meeting his needs, not knowing what else to do to help him, and feeling useless as his mother.  It's a feeling we all, any parent of a non-verbal child, know too well. There are times when Jimmie will scream, and I simply cannot find the reason for it.  He has his milk.  He has a clean diaper.  He has no obvious wound.  He hasn't fallen.  He's just crying.  Or worse...he's crying and hitting himself (or banging his head on a wall or floor).  He did this for a month and a half this year, pretty much all day long.  I knew he was in pain.  I just couldn't find the source.  We took him to the dentist.  His teeth were fine.  We took him to the doctor, who agreed, there were no obvious wounds or broken bones.  He had a CT scan to confirm no head damage.  Normal.  We took blood samples to test for infections.  Normal.  In the end, David noted that Jimmie was burping a lot.  So we added prevacid to his daily meds regimen.  The screaming stopped.  Ahhhh.  Of course, this still happens on a smaller scale quite regularly.  Jimmie simply is unable to communicate what is wrong.  One day I lay down in bed with him and told him this story to help him understand.  I don't know if it helped him, but it certainly helps me. 


"Once upon a time there was a young Prince named Jimmie. Prince Jimmie was very well loved by his mommy and daddy and brother. And they tried to give him everything he needed. But Prince Jimmie couldn't talk or communicate what he needed. But he has a special friend in God, and God knows what Prince Jimmie needs and will provide it, even though Jimmie can't speak.  God knows Jimmie's every thought and want and need.  And God loves Jimmie as one of his greatest creations.  See God made Jimmie...and Mommy and Daddy and Charlie and everything...and gave Prince Jimmie to Mommy and Daddy to care for and love.  God knew Prince Jimmie even before he was born or even formed.  And God never leaves Prince Jimmie.   God tells mommy and daddy and Charlie what Prince Jimmie wants and needs. But sometimes they can't hear God so well and it takes time. But in the end they will understand.  It's okay for Prince Jimmie to cry.  It lets mommy and daddy know he needs something.  It lets them know they need to listen to God and trust God to help them understand him.  And it's okay for Mommy and Daddy to try and teach Prince Jimmie to communicate with them too.  It's hard for Prince Jimmie to do, when the world is so loud and bright and confusing, but God is with them all, guiding them. " 

Playing together...

Charlie is such a great gift to Jimmie.  I believe that wholeheartedly.

After Jimmie was born, as I sat in my hospital bed, holding my perfect newborn son, I knew I would be back.  David wasn't so sure.  But I knew it.

Then the months passed and milestones were missed, and seizures and therapies and doctors became a way of life.  And my husband went from not being sure that a second child was needed to being scared to death to have one.  And as those fears rose in him, a different fear rose in me: "What if we don't have a second child?"  Seriously, we were old.  I was 38 when Jimmie was born.  David was 35.  Who is going to take care of him, like we would take care of him?  And in the end my fear replaced David's fear in his heart too.  And so, as my 40th birthday gift, we agreed to try again.  A month later I was pregnant.  If only it had been so easy with Jimmie.  If only...

I would be lying if I said I didn't have fears of a second child with Jimmie's issues, but in the end, the thought of Jimmie being alone in this world was more than I could muster.  And I would be lying if I didn't say that I watched Charlie like a hawk every day for a year, asking if every movement was a seizure.  I did that.  Praise the Lord, they never were.  Then Charlie didn't speak as he should.  Isolated Speech Delay.  I worried a little...well a lot I guess.  But the delay became less and less more and more quickly.  I don't worry anymore.  I just want to give him every opportunity to catch up.  He dances.  But he doesn't sing.  I try, but no singing.  I think that is part of the speech delay.  He'll get it.  I know he will.

Tonight, my boys played together.  It was wonderful to behold.  Charlie and Jimmie ran through this house, giggling and chasing each other room to room, tackling each other with hugs and body slams.  You'd think they watched WWE or something.  I promise you they don't.   But they wrestled and chased and giggled and hugged all evening.  And it occurred to me that Jimmie was totally present for the game.  Jimmie was participating.  Jimmie was reciprocating.  Jimmie was a five year old.  Charlie is such a gift.  Play harder my men.  Play harder.  I love you both so much.

Random Acts of Kindness

Yesterday, as we visited with my beautiful sister-in-law (she is truly beautiful, inside and out), her middle teenage daughter did what every teenager does: took every chance she could to drive the car.  The kids next door wanted nail polish.  She drove them to Walgreen's.  Her sister wanted something: off to Walmart.  Jamie has her mother's beauty, and an almost glamorous quality in her style.  She's a pretty girl.  Slightly shy...well very shy...smart, and it seems, kind.  After taking the kids to Walgreen's, she came in the house, bashfully, looking down.  "David says I got scammed."  Her mother looked concerned.  "What?" 

"Well, as I was pulling out of Walgreen's, a man in a car pulled up beside me, with his windows down.  He had his wife and kids in the car with him.  He yelled to me, so I rolled down the window.  He said that the ATM ate his card, and that he was out of money, and that he was nearly out of gas and would not be able to make it home.  He said he never did this, but he wondered if I had any money to help him.  AND HE HAD KIDS IN THE CAR.  So I gave him $10."

Beth smiled at her daughter.  "That's okay, Jamie.  It's fine."

I felt compelled to relieve the child's mind, since it was my husband's big mouth that had caused her distress at her good deed.  "Jamie, he might have been scamming, but you gave that money to a family in need.  In the end, what you did, outweighs anything HE did.  Don't walk away thinking he may have scammed you.  Think only what you thought when you gave it:  those children needed your help and you helped."

Jamie smiled and ran upstairs to deposit her purse in her room.  I don't know if I really explained it well or not.  But I think she understood.  The random act of kindness she performed is more important than the possible ill act of another.  There is no way to know if that man was lying.  People lie.  But suppose, just suppose, he wasn't lying.  Her $10 got those kids home safely.  Her kindness gave that man faith in the human race and made him believe the angelic look of the girl in the next car actually masked a real angel.  Surely he was searching for her wings as she drove away.  And if the sun got in his eyes, he might even swear he saw them.

After she left the room, I looked at Beth.  "I really think it is important to give randomly to people on occasion.  And sometimes you don't know if what you did matters, but sometimes you do."  I then told her the following true story:

Two years ago, my mother's sister and her second youngest daughter and two of her children visited Chicago.  My cousin's eldest daughter Jill was in a figure skating tournament.  They live in Boston, so it was a very rare visit.  I was more than excited to drive into the city to meet up with my aunt, cousin, and my cousin's two daughters with my two babies.  It was a beautiful summer day.  We drove downtown (all squeezing into our van) and parked in a parking garage near the Sear Tower.  We took the obligatory elevator ride to the observation deck.  Strangely, as we were buying our tickets and my aunt started to freak out about the height of the building, loudly, the ticket seller looked up at her and laughed and said, "Hey, didn't I sell you tickets to ride the Farris wheel at Navy Pier last night?"  I laughed, thinking it was a joke.  Nope.  He sold her tickets the night before and she had freaked out about the height.  It's a side story that is not really relevant, but I thought it was cute.   Anyway, after we finished viewing Chicago from atop Sears Tower, we walked around the corner to a pizza restaurant.  I explained that Chicago style pizza was a must.  They had never seen the sauce on top that way.  As we left the restaurant, Aunt Cynda noticed the road sign that read, "Start of Historic Route 66."  Pictures all around.  It was fun.

But on the corner a few feet from that sign stood a man in his winter coat with a coffee cup.  Remember it was summer.  His beard was full.  He was dirty.  His sign said he had been laid off.  My aunt and cousins walked away.  I reached into my purse to give a dollar...only I had not spent any money yet, blessed by my aunt's kindness, and all I had was twenties.  I was committed at this point though, the man had seen me.  That wee small voice whispered, "It's okay."  I shrugged, pulled out a $20 and shoved it deep into the coffee cup and practically ran to catch my aunt, without speaking a word.  And then I knew it was okay.  I knew I had done the right thing.  In a way Jamie didn't get yesterday.  I heard the intake of breath.  I heard the footsteps start, even before he started to yell after me.  I heard him calling, "Ma'am, Ma'am, wait.  I think you made a mistake."  The homeless man on the corner was chasing me to give me back my $20.  Seriously.  When does that ever happen?  The tears welled in my eyes.  I stopped mid-street, turned, took his hand and pushed the money back.  "No sir.  I did not make a mistake.  I know what I gave you.  Go eat something."  He looked shocked.  "Wow.  Thank you so much.  Thank you.  God bless you.  Wow."  The tears came then.  "Thank you for that sir.  I think He does."  I turned back to my aunt who was standing beside me then.  "What did you give him?" she whispered.  "I only had a $20.  And he looked hungry," I shrugged.  "That was so nice, Lacy."  And we walked on, leaving him.  It was one of the best feelings I ever had.  I don't know what happened to him.  I don't know that he ate.  I do know he was an honest man.  He proved it.  And I know I did the right thing.

It had started years before.  When I started by doing the wrong thing.  It was DC.  Not Chicago.  I was trying to get it together.  I was looking for a real job.  I was broke.  Seriously only had a few dollars in change in my purse.  I was working temp jobs in DC.  I was driving a Chevy Cavalier my father had purchased from the junk yard.  It had been totalled in an accident.  There was blood stained on the backseat from an injury sustained in the accident.  The rear end was crumpled.  But the engine was a lion heart.  It ran like a dream...and looked like a nightmare. 

It had been a rough day.  I had not earned much money and wouldn't get paid for a few days.  I had no idea how I would get back the next day, or if I would even make it home on the gas in the car.  It was summer.  It was hot and sticky.  And the AC didn't work in that car.  The streets of DC had been scattered that day with drunken, drugged, vagabonds.  It felt like that scene in  Raiders of the Lost Ark, when Indy runs after Marion in the basket and into the square full of beggars who are all pawing at him for money.  Of course, not literally, just figuratively.  That's how it felt.  And as I sat in bumper to bumper traffic trying to exit DC via the 14th Street Bridge, I saw him.  Caucasian.  Mid thirties.  Long brown hair.  Beard.  I kid you not, he had a red head band wrapped around his brow like a crown of thorns, and he stood at the center jersey barrier separating incoming from outgoing traffic on the bridge, with his hands outstretched to each side, feet crossed, leaning against the jersey barrier.  He had propped up a sign asking for money.  And the devil won the moment.  I looked at him and saw a homeless man, probably a drug addict of able body, begging, and I thought venomously, "Oh look.  It's Jesus Christ."  And then I heard the voice.  It was not my voice.  And no one was with me.  The car was empty.  It was a man's voice though, and it spoke clearly, "Ah Lacy, my darling child, as you have done unto these the least of my brethren, you have done unto me.  Remember that."  Wow.  Jesus just reprimanded me.  I sat there with my mouth open and the full awfulness of my previous thought filled my head and heart.  My mouth went dry.  My eyes however, were not.  The traffic moved.  I lerched forward, next to the man.  I picked up my purse as I pulled beside him.  He smiled and leaned down to my window.  I turned the purse upside down into his cup...shook it.  All I had.  Everything I had.  "God bless you," he said.  "No.  No.  No, " I choked through the tears and dry mouth.  "I am so sorry."  I don't know if he was Jesus or not, but he didn't ask why I was sorry.  He just squeezed my hand and smiled.  And his hand was soft and warm, and though it was dirty, I didn't pull my hand away.  I held it.  And then traffic moved.  He let go.  I let go, and I moved on.  I don't know how I made it to work the next day.  Or how I made it home.  But I did both. 

The reason random acts of kindness are so important is because you never know when that man, woman, or child is really Jesus Christ, in the flesh, when the gift you have to offer is in fact a gift to you, a blessing to your heart and soul...and the reason for that is because every gift of random kindness is in fact a gift to you, a blessing to your heart and soul, because that man, woman, or child is always really Jesus Christ, perhaps not in the flesh, but always in the spirit.  Even if that man, woman, child is conning you, the blessing falls on you for the giving.  Don't you see?