The Magic of Christmas

I am loving this Christmas.

My love, Jimmie, simply doesn't register Christmas, except to kick the tree.  Presents mean nothing.  Santa is nice, and he likes him.  Probably for the red suit and the big smile.  Who doesn't like Santa?  But there is no excitement in his eyes about Christmas.  It's just Christmas.  It's fun.  There's family.  Scott's house or Aunt Beth's house are nice places to run around in.  They're bigger than our house.  But that excitement only comes in the being there.  There is no anticipation.  And anticipation, after all, is the magic of Christmas.

Last year Charlie was almost 2.  I had hoped he would kind of get it, but not really.  Not yet.

This year, he is almost three.  He has learned to talk.  And he gets Santa....big time.  He watches all the Christmas Specials.  He went to the Christmas Parade with Mommy (Jimmie stayed home sick).  He watched the parade as he shivered with a huge smile on his face.

He waited in line at the bank after to see Santa Claus.  He was patient.  He did not butt in line.  He stood by my side the whole time.  The little boy in front of us was about Charlie's age.  He would have none of Santa.  Nope.  Not sitting in his lap.  Nope.  Not smiling for a picture.  Nope.  I have no idea who this person is, and he scares me.  Nope.  But Charlie stood there perfectly calm, holding my hand.  Then the family moved on, giving up this year.  I said, "Charlie, it's your turn."  He dropped my hand like a hot rock and took a running leap into Santa's lap.  Big grin.  Big hug.  Tongue stuck out.  For some reason he sticks his tongue out when he smiles.  Santa asked, "What do you want for Christmas?"  He gave a one word answer, loud, and clear, at least to Mommy, who actually did have to interpret it to Santa, "TOYS!"  Santa laughed, "Ho Ho Ho!  I think the elves can manage that!"  And for a week or so, that was the best answer we could get out of him.

But I knew his secret desire.  And he revealed it to both Mommy and Daddy in a simple trip to the grocery store.  He walked by the cart.  And then he saw it!  And he made a run at it!  And he squealed with delight!  "FLASHLIGHT!"  His father pried it out of his hands.  I laughed and said that he should ask Santa for it.  He put it back with joy knowing that Santa might bring him that flashlight.  We walked away.  As we rounded the corner, and he bounced ahead, I gave his father the high sign.

Ever since, whenever you ask what Santa is going to bring he says, "Toys!  and a flashlight."

Tonight we called the North Pole.  Charlie spoke to Santa on the phone.  Santa asked again what he wanted (and again Mommy actually had to interpret), and Charlie once again responded, "Santa Claus bring toys and fwashwight!"  He really wants that flashlight.  And it is so awesome!

He sat in the recliner covered with the Disney blanket, drinking a glass of milk, watching House of Mouse Christmas, falling asleep.  I got him into bed, tucked in, teeth brushed, books read, prayers said.  No sleeping.  An hour later, he calls, "Mommy!  Mommy!"  I go in.  His eyes are wide.  "I hear sleigh bells."  I laugh.  "No baby.  Not yet.  You have to wait a few more days."  He says, "Oh.  Santa Claus bring fwashwight?"  I assure him that I am sure Santa will bring his flashlight.

Yes.  The magic of Christmas is the anticipation.

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?

Things Change

I don't know how to explain it.  Things just change.  Suddenly I can't watch Radio.  I tried.  Just couldn't.  All I kept thinking was if that were my son...Well, there would be some football players who'd learn the meaning of not messing with a Mama bear.  Run?  Those boys wouldn't be able to run when I was done with them.  And then I shut it off.  Forget it.  I can't watch it.  I can't.  Never mind I've seen it before.  The meaning has changed.  The perspective has changed.  Social outrage has turned itself inside out and become personal outrage.  I don't need that much emotion from a movie.  I don't need to watch my personal fears acted out on the screen in front of me. 

When did that happen?  Was it during those days while we were waiting for that first EEG?  I held my infant son and worried that he would be "delayed."  Stupid word.  David got mad at me.  He said seizures don't mean he will be "retarded."  No they don't.  But I knew in my heart.  I knew.  Did it happen then?  Or was it after the EEG and the news that our son had Infantile Spasms?  Or maybe it was after months and months of therapies and ever emerging delays reared their ugly heads?  He wasn't walking.  He wasn't talking.  He wasn't crawling even.  Slowly he fought, and slowly he learned.  Or maybe it was with that first report from school that said he wouldn't be ready for kindergarten?  I guess, I'll never know...except that tonight, I couldn't watch Radio. 

So what do I do with all of this personal rage?  I really haven't a clue.  I've been so busy feeling sorry, I haven't allowed myself to feel anger.  Anger at the world.  Anger at myself.  Anger at my spouse.  I hate anger.  I'm not good with it.  I am terrible at confrontations.  And well, while I am angry at all these and more...I'm also not angry with them in particular.  It's more of a general angry.  I need a good long scream.  But the kids are sleeping. 

Gifts

One thing you learn when you are the parent of a child with a severe medical disorder is that people will give your child things.  It feels weird at first.  But I personally think that these gifts to your child should be accepted with open arms and an open heart.  Here's why:

The first time Jimmie was given a gift just for being "sick" was in December 2006.  He had been admitted to the hospital for testing due to his seizures.  It was about a week and a half before Christmas.  There had been a young man of 19 who had just passed away from cancer.  He had spent much of his young life in the very hospital we found ourselves in that day.  He had said that no kid should be in the hospital at Christmas without a gift and had started a toy drive that was thriving in his community in Joliet.  The volunteers gave Jimmie a toy hammer that is played with nearly daily in our home, even to this day.  It makes noise like sawing and a kind of wubba wubba noise that makes me think of the Three Stooges.  They also gave Jimmie a beanie baby lion.  This gift was a favorite for over a year.  We had been reading Jimmie The Happy Lion at the time of the gift, so the Lion was naturally immediately named Happy Lion.  Jimmie loved chewing on his mane.  Hundreds of toys in this house.  Many I have no idea where they came from.  Those two I know exactly where they came from.

Then one day, I was reading on Braintalk about a friend's daughter's "Love Quilt."  I visited the website and asked for a quilt for Jimmie.  Now certainly we have blankets for Jimmie.  Very nice blankets.  But I decided to ask for one of these for Jimmie anyway because this is special.  Each individual panel is cross-stitched by a different person or group who volunteers to do this.  The individual panels are sent back to Love Quilts.  Another volunteer pieces the panels and quilts them together.  You can feel the love in every stitch.  Love from all over the world from people whom we have never met.  All we are asked in return is our story...our website so that the volunteers can read about the child they are stitching for.  Jimmie's is a Winnie the Pooh themed (with a couple of different Teddy Bears thrown in for good measure) quilt.  It came just after his second birthday, when I decorated his room in Winnie the Pooh.  It's beautiful.

And even later, I noticed so many children of my on-line contacts getting wishes granted from Make-a-Wish Foundation.  This one gave me pause.  But I pushed myself on.  I really thought it was saying my child is dying.  So you know, IT'S NOT!   Wishes are granted for children who have life threatening disorders.  That is not the same as terminal.  Now certainly we could take our children to Disney on our own.  That's not the issue.  The thing is, David and I could never do for Jimmie and Charlie and ourselves, what Make-a-Wish did for us.  It was truly the most stress-free vacation we had ever experienced.  There was nothing but joy.  My husband, who was very anxious about accepting this gift, became a staunch supporter, stating, "If your child qualifies for a wish, get one granted.  You'll never regret it. You owe it to your child."  The love from all the volunteers, the fun, the absolute miracle of the entire process was beyond words.  We chose Jimmie's wish for him, since he is developmentally like a one year old and is still non-verbal.  We chose a Disney vacation.  Make-a-Wish sent us to Give Kids The World Village in Kissimee.  GKTW provided us with lodging for a week, tickets to Disney  (3 day passes), Universal (2 day passes), and Seaworld (1 day passes).  Make-a-Wish gave us all the money we needed for souvenirs and food.  GKTW provided meals and daily gifts from the Gift Fairy and a visit to Santa with gifts for both kids...and memories that we will cherish forever.

Now we are coming up on Jimmie's 5th birthday.  Last year I learned of another charity that will provide birthday cakes for children like Jimmie and his brother.  Icing Smiles.  Jimmie is having a cake made by a lovely lady in Rockford named Lisa at http://sugarcelebrations.blogspot.com/.  She's making him a dream cake with an Imagination Movers theme.  Jimmie loves the Imagination Movers.  We are so excited and can't wait to see it.

I have come to believe that I should look for and accept these gifts for my son.  So many things in his life are so unfair: seizing every day for years, having mommy or daddy stab him in his little legs every day with medicine that blew him up like a little sumo wrestler and caused hair in places no six month old should have hair, having nasty tasting medications shoved in his mouth every day three times as day to help control those God awful seizures, not being able to talk and tell when he's tired or hurting or sad or happy or excited and what about.  These gifts offered from the world at large are small things that we can do to help him feel special and important.  And I truly believe they help the gift giver too.  They want to know about Jimmie.  And they want to do something, even if it's stitching a panel on a quilt or giving a toy or making our dream vacation a reality.  People want to help.  Don't let pride deny you and your child and the world these little miracles.  Accept the gifts with a grateful heart.  You'll never regret it.

Noah Ben Shea or the Bear that made me cry

As my good friends and family know, Jimmie is non-verbal.  It is our main concern at the moment.  Seizures are currently controlled.  He's sleeping through the night for the first time in his life; thanks to periactin.  And his behavior problem is resolved with prevacid.  Yes the boy WAS in pain, just like we said he was.  But still he does not talk or sign.  It took us 2 months to figure out why he was screaming and banging his head.  But even so, there are still moments...

This blog post is about one of those moments.

Last year, I took the boys to Virginia, on my own, to attend David's nephew's wedding and to visit my family.  My sister and I took Jimmie and Charlie shopping with us in Tappahannock at Peeble's.  She was pushing Jimmie in a cart.  I was pushing Charlie.  In the gift department, Jimmie reached out and grabbed a Teddy Bear off the shelf.  It was ironically a "get well" bear.  You squeeze the paw, and the bear starts to talk, in this very mellifluous tone, the actual voice of poet and author Noah Ben Shea, reading one of his poems, written specifically for the bear.  It's a lovely little poem.  At the end, he says, "Peace and blessings, Noah."  The mouth moves, synchronized with the words.  It's really the best done of such things I have ever seen.  But I guess I am partial.  See Jimmie squeezed the paw there in the store.  And he smiled and laughed at the bear the entire time the bear was talking.  And then the bear finished, "Peace and blessings, Noah."  And Jimmie, my non-verbal child, said, plain, loud, as if he spoke it all the time, as if it were a word he heard daily, "Noah."  I stood there in the store and cried.  I hugged him tightly.  And I am not ashamed to say, I hugged the bear too.  And yes, I bought the thing.  Did you think I would walk away from it?  He has never said it again, but he does often press the paw and listen to it.  And I checked.  There are no kids in his class named Noah.  No, this little miracle was brought to us via Noah Ben Shea and his lovely little bear.  God is so very good! 

It doesn't really end there though.  I was so very moved by this experience that I visited Noah's website and sent a message to the company about our miracle.  Within an hour Noah's daughter had responded, saying she would send my message on to Noah himself.  And as promised, she did, because within a day, Noah had emailed me as well.  Both he and his daughter had promised to keep Jimmie in their prayers.  A very nice thing to say.  Ah, but a promise that appears to have been kept.  See, I friended Noah Ben Shea on facebook after the email, and today I realized that Noah Ben Shea is a member of our group page "Pray for Jimmie."  And not only a member, but he apparently pays attention.  He commented on 5/11 about Jimmie's six month anniversary of being seizure free.  I saw that and thought back to that day in Peeble's. 

The miracle is more than the word, "Noah."  There is a miracle in Jimmie's story reaching a man and his family whom we have never met, to whom we have absolutely no connection.  A miracle of Jimmie touching their hearts and minds, if only in a very small way.  There is the miracle of prayer.  It's nice to know that people care...enough to respond to an email and read a post.  And there is the miracle for me of the realization that there are people who actually do say prayers for you when they say they do.  It's a nice feeling.

Celebrating Miracles With Bated Breath

We are 10 days shy of 6 months seizure free!  This is the longest period that Jimmie has ever experienced a reprieve from the seizures that have changed the course of all our lives.  They started when he was 4 1/2 months old.  We've beat that.  At that time we started him on topamax and b6.  He went seizure free for a week.  Beat that.  We tried ACTH, keppra, depakote...nothing worked.  Then we tried zonegran.  Well we started with the generic.  With no success.  In December 2008, his epileptologist switched his prescription to "as written."  At first his seizures increased.  But to be fair, he did have a cold and an upper respiratory infection at the same time.  Then on January 6, 2009 he stopped seizing.  One week before the birth of his baby brother.  That reprieve lasted 4 months.  Beat that.  So here I sit, with bated breath, loving Banzel, Zonegran, and Keppra with all my being.  6 months is just a few short days away.  A little over 1 week.  Let's not miss any doses! Shall we? 

Oh, but it is the worst part of my day, administering those meds.  They taste awful.  And he fights it so hard.  I hate giving it only slightly less than he hates taking it.  Contrary to his belief, I do not enjoy holding him down and forcing foul tasting concoctions into his mouth and making him swallow.  In fact it breaks my heart daily.  But I do it.  Because it is what is best for him.  Because it is working.  And that makes it worth the heartbreak.

So right now, I feel like dancing.  I feel like yelling, "Yee Haw!" loud and long and to the sky! 

Not only do we have seizure freedom for our beautiful boy, but he has made leaps and bounds with development.  He has better eye contact.  He has a better sense of humor and laughs more appropriately.  He has even played appropriately (on rare occasion) with toys, once even sitting on the ride on firetruck and pushing it with his feet, just like you're supposed to.  He has sat on his daddy's lap and slapped his daddy on the chest happily cooing, "DaDaDaDaDaDa."  He hugs readily.  And low and behold, the boy has looked when his name is called and come when asked to come! 

 

Once Upon a Time

Once upon a time, I was completely unaware.  I thought I was enlightened.  I had a college degree.  I had a best friend who had epilepsy and hydrocephalus and then later a son with autism.  I had a cousin with down syndrome.  I had a mother with scleroderma and whose health deteriorated right before my very eyes, a mother who went from a healthy vital woman I hardly remembered was sick to a woman dependent on oxygen and unable to walk a few feet without taxing her heart and lungs.  I thought I understood. 

I was wrong.  Having friends and family with medical issues, developmental delays, and seizures does not prepare one for having a child with these issues.  Oh, it helps.  I had been introduced to the language.  And I had a built in support system with the shared experience.  I had that best friend to call when I needed her, though sadly I lost my mother before I really needed her.  I had my aunt to offer encouragement.  And my respect for her quaddruppled.

I didn't see the encouragement that way when she offered it.  But her words became a ray of hope for me to cling to as my child grew older and still had not walked.  "Joe Joe was 6 before he ever walked.  He sure wore out the baby walkers though."   It became a mantra of sorts.  Joe Joe was 6.  Joe Joe was 6.  Jimmie did it at 2 1/2.  And now, like Joe Joe before him, you can't keep him seated.  I love to watch him run down the hallway...bounce, bounce, bounce...arms flapping, smile on his angelic face, up on his toes, leaning forward.  Terrible stance, but beautiful in his independence.

I watched Rain Man 20 years ago, like everyone else.  I cried 20 years ago at the scene where Tom Cruise understands Dustin Hoffman (Raymond) was his imaginary friend the Rain Man, who sang to him when he was scared.  I saw it today with different eyes...or a different heart, perhaps.  I can't even explain what I felt watching it today.  It was just different.  It was...enlightened.  I cried very hard. 

Charlie stood at my side with his hand on my knee and a look of worry on his little face.  He's my angel too.  I looked at him and saw his concern.  I smiled and patted his cheek and told him I am just being silly.  The movie made me cry, but I am okay.  He breathed a sigh, and smiled back up at my tear stained face, and I swear I heard the relief in his little voice as he quipped, "Bye bye?" because he wanted to go outside.  I said, "Yes, let's go bye bye."  And then he was 2 again and happy to be going out.  I am so proud of him.  He takes such good care of  his brother and of me.  He is going to be a very caring young man and adult.  I know it.  I saw it when I turned away from the tv and to his face. 

Have I really changed?  Yes, I think I have.  It's not anything I can explain.  It's something inside of me.  It's wrapped up in love and understanding and maternal instincts.  Once upon a time I would have been more eloquent, but I still would have missed the point.

Angels Among Us

I believe in Angels.  I believe in God, and I believe he has messengers and guardians.  I believe in Angels.  I pray nightly for intercession from St. Michael.

I've read those Miracle books...you know, the ones that describe encounters that border on the heavenly. 

And like any person who believes I've had my own experiences.

Let me start with my sister's experience.  My mother was in the hospital, on her deathbed.  My sister left her to drive the 50 miles home.  She was afraid to stay.  She asked Mama to hold on until the next day, but alas, she could not.  At the moment my mother passed away, my sister was driving and listening to the radio.  That song by Diamond Rio, I Believe, was playing.  She knows this because it was playing when she got in the car, and the radio station appeared to be experiencing some kind of malfunction.  The song played and replayed all the way home for her, and the moment she got home, she had a message from my Mother's friend Kathy, who had stayed, that Mama was gone.  Sometimes an Angel is a familiar voice or song.

Now...my angel.  I thought about it tonight for the first time in a long time. 

In the weeks leading up to Jimmie's diagnosis, when I first started noticing something was wrong, Jimmie was slightly fussy.  Well, a lot fussy.  And he always hated Walmart.  Always.  The lights have always been a problem for him.  I was doing the bi-weekly shopping, and Jimmie was in his infant carrier, screaming and kicking rather violently.  I was unloading my cart onto the conveyor belt at the checkout.  There was a child in line behind me, with his mother, a little boy about 4 years old.  With wide eyes and a tremulous little voice, he pulled on the hem of my shirt and said, "I think he's having seizures." 

I didn't know the child.  And I've never seen him again.

Angel.  I'm totally convinced of it.

Being a Girl

It's fun being a girl.

A while ago, in Walmart, someone complimented my purse and asked where I had gotten it.  I answered.  They told me that there is a great place for purses by the Social Security Office call Beautiful You Boutique.  Today I finally got the chance to check it out.

The owner was a very nice lady who gave Charlie an Elvis Rubber Ducky.  A picture of her son was hung on the wall dedicated to autism awareness...jewelry, tees, everything.  He is 9 and assessed at 2 - 2 1/2 developmentally, mostly non-verbal, but obviously the light of her life and she "celebrates his differences."  Obviously, I felt an instant connection.

Not to mention I loved everything in her store!  What an awesome place!  The slogan under the store name on the sign is "Because we give a glam!"  Don't you love it?  I love anything sparkly.  And the place was sparkly to say the least!  And the purses were indeed gorgeous!

It is such a feminine store.  My husband would hate it.  But I had a wonderful time looking at the shiny things.  I live with three "men," two little ones and one big one.  It's great to know there is a retreat from all the testosterone just down the street.  Apparently my soul needs pretty things!

Time Travel

I have an incredible memory...nearly photographic, to the point where I once flung a book open to the right page and pointed to a word on that page without looking to prove it was indeed correct to a professor.  It means I am pretty good at trivial pursuit.  And that's about it at this point in my life. It made studying pretty easy when I was in school.  I'd give it a once over and have it.  It's a talent that has irritated many friends who were struggling.

Occasionally, this amazing memory has transported me at a moment back in time to my childhood. 

Once, I was riding in the car beside my mother.  I heard a noise.  I sat there for a second, lost in time.  Then without really thinking about the fact that my mother had no clue that I was remembering or what I was remembering, I asked absently, "How did YOU do that?"  She looked at me puzzled and said, "Do what?"  I laughed and said, "Oh, sorry.  I was just remembering going to see the Headley's on Christmas Eve after mass (and we would have had to have been quite small because we started going to midnight mass when we were old enough to) and as we were leaving, Tammy, Greg, and I were looking for Santa Claus in the sky.  And you know there is always a plane up there, with it's red light, on Christmas Eve...when suddenly there were jingle bells!"  My mother's mouth fell open.  "How on earth do you remember that?"  I don't know.  Something reminded me.

Once when I was a teenager, before my parents split up, we were sitting at the dinner table.  I asked whether my third birthday had been the party in the garage or the trip to the circus?  My mother was flabbergasted.  "You don't remember that.  You've just been told about it."  "No.  I remember the entire circus singing Happy Birthday to me."  Again the look I got every time I did this to my mother crossed her face.  And she laughed, "I guess you do remember.  But it wasn't the entire circus.  It was Barnum and Bailey's 100th Anniversary.  The audience sang Happy Birthday to the circus.  Your dad, me, Grannie, and Granddaddy sang it to you."  Oh, and it turned out that both these were my 3rd birthday.  We went to the circus on my birthday and had the party on the weekend...in the garage.

It happened again today.  I was listening to the radio, sort of.  I was driving and the radio was on.  For some reason, Dwight Yokum was talking about the Hatfields and McCoys.  Most children play house.  We played house too, but we also played other pretend games with the boys next door, including Buck Rogers (our favorite), but once we played the Hatfields and McCoys, with a Romeo and Juliet twist.  Generally, I would have taken the romantic lead, but this time, I allowed my little sister to have it.  I couldn't tell you why.  Now my first question is where on earth would an 8 year old have learned about the Hatfields and McCoys?  And my second question is how would we have known to create a Romeo and Juliet?  We were strange kids.

Birthdays

I've had one of the best birthdays ever this year.  I asked my friends to wear purple and tag me with their pictures of themselves in purple on my facebook page.  I got tons of pictures.  And even more people messaged me that they too were wearing purple.  I asked it for a reason, for epilepsy awareness.  But it was really so much fun.  My husband was helping his best friend move that day, which I totally supported because Mike had helped us move when we bought our house.  I was fine with it.  David didn't get home until after 7, but he picked up dinner at the Candlelight Inn and a bottle of Spumante on his way home.  We sat and watched Mildred Peirce, which he never would watch without it being my birthday and ate our dinner (mine was the biggest t-bone steak I've ever seen, and I could only eat half of it) and drank our wine.  Then the next morning we took the boys to his sister, and we went to see The King's Speech, which was my choice.  And then we had dinner with David's sister and family.  And they gave me a beautiful bracelet.  All in all, it was just wonderful!

It has started me thinking of previous birthdays.  I remember waking up one birthday morning to find the family room covered in balloons.  I don't remember how old I was.

My tenth birthday was in Florida at Disney World.  I bought myself the stuffed rabbit my sister wanted to buy me.  I got my ears peirced.  I got lost at Cyprus Gardens.  It was a fun vacation.

And there was my 11th birthday.  I was awakened by a noise at 11 pm the night before.  Both my parents were in my room.  My mother pounced on me and said everything was okay.  My father dropped something on his hand and cursed.  I sat up and turned on the light.  There it was...my very first stereo turntable.  Yeah, I'm that old.  Shut up.  I also got a copy of the Greece album.  YES, I ALREADY ADMITTED I AM THAT OLD; SHUT UP!  It was brand new at the time. 

My twelfth birthday party was held at the bowling alley.  Me and my friends and my little sister.  My mother said we all talked about where babies came from and how we WERE NEVER going to do that.  And Tammy, my little sister, said she couldn't wait.  My mother knew she was in trouble then.

My thirteenth birthday was a surprise party.  My father's birthday was 3 days after mine.  Connie Worrell, a lifelong friend, had been my science partner in the science fair, and we won at the school level and were competing that night at the regional level at the community college.  We came in third.  It didn't really occur to me that it was odd that my mother was not there to cheer me on.  Connie's mother took us.  When we got back to my house I asked why were there all those cars?  Connie whispered that it was a surprise party for me and my daddy.

By my fourteenth birthday, it had all gone to hell.  I didn't even want Mama and Daddy in the same room as each other anymore.

The night before my 21st birthday, I went out with Aleca.  She was having problems with her now ex-husband, and had moved home with her parents, but it was before they had the twins, so the divorce was years off.  But she and I went to Fredericksburg to the mall.  She told me she wanted my opinion on something, she had a friend she wanted to buy a gift for but couldn't make up her mind.  She took me to a jewelry kiosk.  I don't remember the choices, but I told her I thought the turquoise and silver earrings were beautiful.  She agreed and bought them and then turned and handed them to me.  Happy Birthday.  I was completely taken by surprise.  Seriously.  I know I should have seen it coming, huh?  Anyway, we went back home and ended up in a restaurant/bar, where my mother and stepfather were spending the evening at just minutes before midnight.  The doorman took my ID and laughed and said to wait for 10 minutes to order a drink and let me in.  I did.

Four years ago, when Jimmie was a baby and still on ATCH, my friend Liz came out to visit us around my birthday.  It wasn't the day exactly, but I wanted a digital camera for my birthday.  And David had said I could have one, so we went shopping at Walmart so I could pick one out.  I picked out a less expensive camera but deeply admired the Sony CyberShot.  Liz stood there with her head cocked to one side and said, "If money wasn't the issue, which one would you want?"  Yeah, I'm stupid.  Once again I didn't get it.  I said the CyberShot.  She told the guy at the counter, "She'll take that one."  My jaw dropped as she handed him her card.  She looked like she had swallowed a canary.  Cat imagery in case you missed it.

And then there is this year.  My family and friends all wore purple and sent me pictures.  It was awesome!

Celebrating Purple Day! Happy Birthday to ME!

March 26th is my birthday.  I'll be 43 years old.  It's also Purple Day.  And that is a fabulous birthday present!

What is Purple Day?  So glad you asked.  Purple Day is an awareness day.  You've heard of them.  Cerebral Palsy Awareness, Breast Cancer Awareness.  Well that's what Purple Day is.  It's an awareness day for Epilepsy.  The idea is simple:  You wear purple.  People see a lot of people wearing purple and start to ask why all the purple.  And then you answer, "To raise awareness about Epilepsy."

Epilepsy is one of those things everyone thinks they know about.  But in truth they really don't. 

First, epilepsy is not a one pony show.  Most people think of epilepsy and seizures as the tonic clonic, what used to be called gran mal.  My son has never had a tonic clonic.  He has, none-the-less, had multiple seizures every day for most days of his young life.  He has atonic (or drop) seizures, including both a simple head drop and a full body drop, tonic seizures (stiffening), where his muscles all tighten and his airway constricts, atypical absence, where he closes his eyes and appears to be daydreaming (atypical because he does close his eyes), and myoclonic, where his muscles will suddenly jerk.  I further believe I have seen him have one Jacksonian, which consisted of a bizarre kind of shaking on one side of his body, though it was not caught on EEG and therefore unconfirmed.  My son's seizures don't look like what people think of as a seizure, and they will tell you, "No he didn't have a seizure."  But I know better.  I know he did. 

Second, epilepsy, especially uncontrolled epilepsy, is life threatening.  The seizures themselves can be life threatening, from injury or loss of oxygen or cardiac arrest.  But there is also a very dangerous risk of SUDEP, Sudden Unexplained Death in Epilepsy.  This usually occurs during the night.  So many people think that epilepsy is almost a non-issue...oh you get used to having seizures and you're okay when it's over.

Third, for some reason, (and this is our personal experience) people seem to think all children outgrow it.  Many children do have febrile seizures or other unexplained seizures that do stop as they develop.  But that is not true of all epilepsy.  And certainly not of our son's epilepsy.  Our son has an intractable epilepsy (just means it is difficult to control).  He will not outgrow it.  And your saying he will, while intended to comfort us, actually just sounds like you think we are overreacting to the situation.  We are not.  In fact, epilepsy does not have a cure.  Wrap yourself around that.  There is no cure.  There is remission.  But no cure.  Jimmie will always have epilepsy.

Treatment is a guessing game.  We (I mean the human race) have so little understanding of the workings of the brain that we have no knowledge of how epilepsy works.  There are theories.  But they are unproven.  And we really don't know how anti-epileptic drugs work to stop seizures.  Again, there are theories.  But they are unproven.  So doctors, neurologists, guess at drugs to administer.  If it doesn't work, try a different dose.  If that doesn't work, try a different drug.  If that doesn't work, try multiple drugs.  If that doesn't work, try a diet.  If that doesn't work look at surgery, if surgery is an option.  That isn't to say it isn't an educated guessing game.  The doctors know what drugs work for a fair number of kids who have similar seizures to your kid.  It doesn't mean it will work for your kid, but it's worth trying...There are no absolutes with epilepsy.

So with these generalizations in mind, I am asking you for a birthday present.  Please wear purple on March 26th.

Spring

My Sand Cherry!  I can't wait for it to bloom again!

In truth, Fall has always been my favorite season.  I like the briskness of the nights, with the warmth of the days, the smell of the autumn breeze, sweaters, school...  But there is something about Spring.

Spring is such a happy time of year.  I mean I feel happy in the spring.  The air turns warmer.  The colors are so vibrant and new and fresh and happy.  There is rain too, but even the rain is happy.  I love the sound of it on my roof...maybe because it is my roof.  The air smells good too.  Cleaner.  There is music in the air.  Literally.  Birds are singing everywhere.  And they sing such a happy song! 

In Northwestern Illinois, it is still quite cool.  But this week, there has been a hint of spring in the air!

My kids feel it too.

Charlie just couldn't wait to get outside today.  I made him put on his jacket.  He grabbed his cement mixer truck and little people school bus and was out the door!  He ran gleefully to the backyard, dumped both vehicles into his wagon, which he began to push around the yard.  I tried to show him how to pull the wagon with the handle, but no...he preferred to push it.   His jacket lasted about 5 minutes.  Who exactly taught that boy how to use a zipper?  Oh..right...me.  What on earth was I thinking?  Certainly not that he would rip his jacket off first time I turned around.  I tried to get him to put it back on, because, as I said, it's still cool.  He wouldn't have it.  He shook his head no vigorously and ran away.  Oh well.  If he gets cold I guess he'll put it back on.

Jimmie too was off like a shot.  He ran around the backyard at full speed several time.  Then he would play with a stick.  Then he would run again.  Smiling and squealing as he went.

The grass is still brown.  The tulips have not yet bloomed.  The trees are still bare.  But Toby killed a Robin last night and left it on the doorstep this morning, so there are signs of spring starting to stir.  Poor Robin.  Toby is a prolific hunter.  We had a full grown rabbit left for us a year ago.  And while our front porch is a killing field, we don't have mice despite the open field in back of our house!  Go get em Toby.  Toby loves spring too.  Getting him inside this week has been more difficult than getting him to go outside during the winter...and he's part Maine Coon.  He's designed for winter.  But he stands at the door, looks at the snow drift, blinks, and you can practically hear him say, "Yeah, right.  You first" as he turns and walks back into the warmth of the living room and to his cat tree.  But this week.  Nope.  There is spring out there.  Baby birds and rabbits.  Clean smelling breezes...and color.  Can cats see in color? 

Another few weeks or so, and it will be perfect!

Come on Spring.

A Mission to Change the World

I have a mission to change the world for the better.  My husband says I am doomed to fail.  Perhaps, I am.  Perhaps I will not make the slightest difference at all.  But maybe, just maybe, I can cause one person to think twice the next time they are talking with their friends about the use of THAT word.  Maybe I can change the mind and heart of one person.  So I have a mission.  I never let that word pass without saying something.  Ever.  I don't care who says it.

"Mr. President!  Excuse me?  What did you say about your bowling abilities?  Perhaps you should reword that!  NOW!  I realize you didn't actually say the word.  And I know you are joking.  But you implied the stigma, and you made fun of it!"

Let me start by explaining a few things.  First I grew up loving and playing with my cousin Joe Joe.  And I have defended him against mean bullying brats on the school bus from the first day I got on it.  Joe Joe was a kind soul.  He loved everyone.  And even he would furrow his brow and frown at their merciless taunts of "RETARD!"  Joe Joe was non-verbal.  But he would flip them the finger.  This boy who loved everyone would flip them the finger for calling him that word.  He was born with Down Syndrome.  He did not walk until he was 6.  He only said a very few words, and they were difficult to understand.  He said my name.  He loved me.  Of course, it sounded like "Guna."  My name is actually Lacynda.  But I knew he was saying my name.  He passed away a few years ago.  Thankfully, passing before his mother, my aunt.  I know her grief is beyond expression and that she does not feel this way, but she was his sole caretaker.  If she had gone first, Joe Joe would have been lost without her.  One of his brothers doubtlessly would have taken over, but I don't see them doing it with as much love and tenderness as his mother.  He would have lost more than he could have handled I fear.  But back to my point.  Joe Joe was a wonderful human being.  He always greeted everyone with a hug and a smile.  But he understood the hurtfulness of that word being flung at him, and he responded in kind.  How evil is a word that it can make a sweet, kind, loving non-verbal person respond to it with an obscene gesture?

Second, I have a 4 year old son, who is the center of my universe and who has severe epilepsy, mild cerebral palsy, and a moderate to severe developmental delay, being assessed at 12 -18 months developmentally.  He is also non-verbal.  He does not understand THAT word yet.  No one has flung it in a hateful way in his direction.  His younger brother, who is neuro-typical, also has no idea of the insidiousness of that word.  I know though that soon both of my boys will know the sting and hurt that word will cause.  I can't protect them from it forever.  But I guarantee the first time I hear it, the little brat who uses it will certainly get an earful from this Mama.

There is a ridiculous defense that "I am not using that word against anyone in particular and I have freedom of speech, so I am not apologizing for using it."  Give me a break.  You don't have to use it against anyone.  Just using it at all is an affront to humanity.  It makes it socially acceptable to bully an entire group of people, including MY CHILD.  And not just children.  I am talking about adults bullying an entire group of people, taking advantage of them.  A year or two ago, there was a Turkey company in Iowa, who were shut down by social services because they brought in a group of developmentally challenged men from Texas to work in their processing plant, paying them below minimum wage, and housing them in a condemned building without heat and running water, in the dead of winter, by the way, without benefits, without health care.  Basically, they were using these men as slave labor...IN AMERICA.  And then there are the people who steal from and abuse people in group homes because they have no one to stand up for them.  And it is all socially acceptable because we degrade and belittle people by using that word.  Further, your rights only extend as far as they don't impede upon mine.  So if you think you have the right to call somebody a "retard," then I have the right to tell you why it's wrong.   And if you can listen to why I am offended and not apologize for having offended me, then you are deficient in morality.

All I am asking is that you think about the words you use.  All of them.  Think before you pour them out of your mouth to the world at large.  They do have an effect.  They do have power.  They do make a difference.  They do cause strong emotions.  You don't have to subscribe to "political correctness."  Just try to not use any words that by design and context are intended to belittle or degrade another human being.

Loving in a Modern Family

I never expected to be quite so traditional.  I never expected that when and if I ever fell in love that I would submit to a man.  I was my own person.  I was smarter than that.  And here I am, a stay-at-home-mom, raising two kids, asking my husband before making big decisions.  It's not that I don't trust my own judgement.  I know what I want to do before I ask, but I do submit to his judgement, because now I realize, even though I am my own person, my decisions affect him too.

We attended a marriage conference this weekend at the baptist church.  And the speaker offered a perspective on Paul's assertions that explained why I am so happy to submit that really helped me understand myself and my husband a little more clearly.  Paul tells us that husbands should love their wives and wives should respect and submit to their husbands.   Now to the casual observer that certainly seems sexist.  Why should the wife submit while the husband is only to love?   Shouldn't it be equal?  Well in truth, it is equal.  Men (and therefore husbands) find it very difficult to express love.  It's hard for them.  But it is what woman (and therefore wives) want the most from their men.  Women (and therefore wives) find it very difficult to submit to and respect their men.  But that is exactly what men want to have to feel loved.  So what may seem like a sexist statement to begin with is in fact nothing more than a loving give and take that provides each partner with exactly what they desire to feel loved and cherished.

Why did I fall so easily into this very traditional role of wife?  It's really very simple.  I fell in love.  And I want to honor that man, and I want him to feel loved and cherished.  And it became very obvious to me that he was a very traditional man and that simply asking for his input before I made a decision made him happy.  When you love, you want to make the person you love happy.  So I ask his input.  I may know exactly what I want to do.  But I love him, so I ask him.  And guess what?  Usually he wants to do the same thing I do.  And when he doesn't, I am flexible enough to give him his way, if only to prove I was right to begin with.  And as much as I hate to admit it, his way usually works out just fine.  Darn it.

And as for him, does he express his love for me?  Well the man sat on the couch for 2 hours rubbing my feet the other night.  I felt loved.  He never made a move other than to caress my feet.  He had no ulterior motives.  My feet hurt.  I had a charlie horse in my arch.  He just wanted to make me feel better.  It was heavenly by the way.  And it served far more than relieving the charlie horse.  It soothed my soul.  He also went to the conference with me.  You can believe it was not his idea.  He had no desire to go.  It was for me.

So is this very traditional marriage somehow outdated?  I don't know.  Maybe.  But we've been married now for 8 years.  And we both still feel loved and cherished and trust our partner more than any other human being.  We are still each other's best friend.  I think we are modern enough.

Dealing with it

Imagine.  A baby.  Your baby.  You have waited all your life for this child.  You have prayed.  And cried when the months come and go and still no pregnancy.  You have visited doctors.  You have taken medications.  And now finally, with the help of modern medicine and a sterile version of a turkey baster, you are holding your perfect child.  He's beautiful in every way.  He has the most perfect little mouth you have ever seen.  Ever.  Your heart is overflowing with love and thankfulness.  You hold him in your arms and you can see an entire future.  You can see him running to you with a boo boo.  You can see him playing little league baseball.  You can see him in a cub scout uniform.  You can see him playing basketball with his dad in the back yard.  You can see him learning to drive.  You can see him leaving on his first date...so cute and shy.  You can see him getting ready for prom and leaning against the car in his tux, just like that picture of his father.  You can see him on his wedding day, so handsome and so in love.  All this in that one moment as you hold him in your arms for the first time and admire that perfect little mouth.

But as time passes, you feel like something just isn't right.  Everyone says that he's fine.  But you find yourself wanting to hear that he's developing normally, because something just doesn't seem right to you.  Your husband tells you that you are just a worry wart.  Your friends say he's fine.  But still you worry.  And then you see the slight upturn of the eyes to the left, with a flash that just looks like he's gone...with a slight jerk of the arms...and you tell people something is wrong.  They say he's just looking at something.  He's tracking is all.  Don't worry so much.  And your husband says he's fine...but you just know something is not right.  So you make him come and watch the bath, when you know it happens every night.  You make him watch.  And his heart leaps into his throat.  And he says, "Yeah, that's...something."  So he grabs the video camera.  And the two of you tape it happening at dinner.  And you call your best friend in Rhode Island because she has epilepsy, and she knows more about it than anyone you know.  She says tape it too...and call the doctor...ASAP.  She doesn't say it's nothing.  She is tight lipped almost.  And this scares you big time, but she is trying not to scare you...and what scares you is you can tell she's trying not to scare you.  So the next morning you call the doctor, and you and your husband practically run to the doctor's office, video camera in hand, tape cued up to go.  And he says...you need a pediatric neurologist...now.  So you go to Chicago.  And you watch them hook your sweet baby boy with a perfect little mouth up to an EEG...and you watch the lines skip and jump and meander in a mean looking way across the screen...and you hear the words hypsarrythmia and infantile spasms...and somewhere in there the pictures of that little boy running to you to kiss the boo boo and playing little league and wearing the cub scout uniform and learning to drive and going on that first date and getting ready for prom and getting married just fade to black.  How on earth do you deal with it?

I'll let you know when I figure it out. 

I do know that you pray.  You pray every single day.

I do know that you love.  You love harder and stronger than you did even before.

I do know that slowly other pictures come to your mind.

I do know that you find joy in that first step, even more because it comes so late.

I do know that you live and do what you have to do.

I do know you still think that mouth is the most perfect thing you've ever seen.  And it always will be.

Sometimes you cry still.  Sometimes you laugh with your whole body.  You hug your child every day.  You work with therapists and doctors and teachers.  You learn a new language.  You seek out people who get it, who deal with it too...or at least are trying to...just like you.

Life goes on.  And those pictures you had...they become less important to you.  You strengthen your faith and your love.  You'll be fine.  Remember he has never been through this before either.  He is learning to deal with it too.

The sound of a baby's laughter

This morning I watched baby Micah, in a viral video, laughing hysterically as his father ripped up a job rejection letter.   There is so much joy in the sound of a baby's laughter.  Everything is brand new.  And in hearing it we feel brand new too.  But you know, it really is so much cuter, when the laughter is coming from your own baby.  Charlie laughing at David making the lollipop noise may not have gone viral.  But it makes me happy in a far deeper way than Micah, cute as he is, can ever do.

Charlie is part of Jimmie's miracle too.

David and I are...well...old.  I was 38 when Jimmie was born.  David, 35.  We wanted a baby so badly.  And Jimmie was such a blessing to us.  A miracle of modern science.  Artificial insemination success!  But then he wasn't developing as he should...and eventually it became obvious that he would never catch up with his peers.  I just couldn't leave my baby in this world all alone.  I just couldn't.

So David and I decided to try again.  But not as hard.  We agreed we wouldn't go the whole fertility doctor route again.  Clomid, fine.  So I went to my obgyn and asked for clomid.  I took it for the prescribed days 5-9 of my cycle.  On day 11 I started the fertility tests.  On day 13 it was positive.  Day 28, I couldn't wait for the next day, so I took a pregnancy test, which was positive before I stopped peeing.  That's Charlie.  Easy.

He's an amazing kid!  He is beautiful too, like his brother, but in a totally different way.  Jimmie is the spitting image of me.  Charlie looks just like his dad.  And he's so smart.  He gets things so quickly.  He's having some issues with talking.  A delay we think comes from the fact that his brother is non-verbal.  But he understands every word we say to him.  And so we are not overly worried.  It's enough that I called Early Intervention.  His evaluation is on March 16.  If he qualifies, we'll do the therapies recommended.  If he doesn't I'll call the school system to get him in the at-risk program.  He qualifies because his older brother has delays.  I want to give him every opportunity to be the best he can be.  But honestly he's great either way. 

His laugh is music.  His smile is light.  His general enthusiasm in everything is life affirming.

Charlie is a miracle.

Today's random thought (March 4, 2011)

I remember that Mrs. Ingram had us keep a daily journal.  It was the hardest thing in the world to do...and to be perfectly honest, really didn't get done most times until the day before it was due.  I honestly just don't think I had that much to say or was that interesting.  I mean seriously, I don't even care that I ate pizza for lunch again on March 10, 1986.  I am making that up.  Like I said, I never kept the thing up to date.  

I thought about that journal during a recent episode of  The Middle.  Poor Sue Heck keeps a diary and records such shocking secrets as she likes lettuce. 

Honestly writing down the mundane day to day stuff of life just isn't that interesting.  But I would dearly love to have no cares or worries to ponder on a daily basis.  What a blessing to have nothing more interesting to write down than that you like lettuce (or pizza for that matter).

Today I am trying desperately to escape the screaming and crying and children laying on me and head butting each other because they each want my sole attention and having to call doctors to ask for a 10 day script for a second AED in less than a week because the stupid mail order pharmacy is ridiculous and STILL hasn't filled the extremely necessary drugs ordered 2 weeks ago which were supposed to be expressed to us last week and still haven't left their stupid pharmacy and the mess of toys covering my living room floor and the pile of laundry needing to be folded! 

So what's for lunch?

The Things I Know

I am a fountain of knowledge.  I know all sorts of useless facts: like an elephant is the only animal with 4 knees.  Like the Etruscans, not the Romans, despite what Trivial Pursuit may think, invented the arch.  Like Dylan Thomas was Welsh.  Like West Syndrome is a devastating form of epilepsy in infants, also called Infantile Spasms, associated with a distinct EEG pattern (or rather lack thereof, since it is an overall disorganization of the EEG) called hypsarrythmia, myoclonic seizures, and delay or stalling of development.  I also know this means that in order to get the diagnosis of Infantile Spasms, hypsarrythmia has to be on the EEG.  If it's not, then it's not IS; it's infantile myoclonic epilepsy.   I also know that it's not just semantics.  Yes the seizures are the same, but the treatment is not.  You don't treat myoclonic epilepsy the same way you treat IS.  And if your child's doctor is worth his/her salt, they should also know the difference and shouldn't tell you it's the same thing.  I know that IS usually resolves itself by age 5, but that it often evolves into another form of epilepsy, often another condition called Lennox Gestaut Syndrome, which is equally devastating.  I know that epilepsy has no cure.  That if the seizures are resolved, the child is in remission, not cured.  The child still has epilepsy; it's just in remission.  Remission is good.  The longer it lasts the better the chances the remission is permanent.  But it is never a given.  Epilepsy never goes away.  Hard facts to know.  Especially when the child is your own.  I know that EEG technicians should never tell you what they see on the EEG.  They may have experience, but they do not have the medical training and resources to interpret what they see and draw conclusions.  That is not their job.  Their job is to run the test, not tell you what the test shows.  I know that hospital food really sucks.  I know that just because an EEG is clean, it does not mean that there are no seizures.  I know that just because an EEG is abnormal, it does not mean there are seizures.  I know a lot.

I also know that not everyone wants to hear what I know.  I know that I can come off like a know-it-all.  I know that the parents of an infant want to believe that no seizures means no more epilepsy.  I know that they want to believe the tech who tells them what they want to hear, whether positive or negative, when it contradicts the doctor, who is, like me, saying what they do not want to hear.

I don't want to alienate these people who do not want to hear what I know, but I feel compelled to share my knowledge anyway.  I always have.  But unlike in school, when I wanted to prove I knew more, I really just want to help these parents.

I want them know what I know because I have been where they are.  I have forced my infant to stay awake so that he will sleep during the EEG.  I have seen him hooked to EEG's.  I have seen the hypsarrythmia bleeping across that stupid screen.  I have shot my child full of ACTH.  I have seen him fight to learn to crawl and walk.  I have seen him seize uncontrollably every single day for years.  I have given him a myriad of medications to try and fight the seizures.  I have been handed sheets of paper from doctors with lovely words like "post infantile spasms intractable seizure disorder evolving to Lennox-Gestaut Syndrome" and "hypo tonic and ataxic cerebral palsy". 

And in a few years, they'll be where I am now, and they will want to share what they know too.  It helps keep us sane.

OH how I pray for more patience and understanding!

It's been two weeks now.  Screaming.  Crying.  Head banging.  Biting.  Smacking himself in the face with his cup, a toy, a book, whatever he has in his hands.  I am afraid he is in pain.  And I don't understand what pain or what to do about it. 

I thought it was his teeth.  I was sure of it.  I pushed and pushed and begged and finally convinced the local pediatric dentist to look at my son now instead of waiting the month for the appointment they had available for a new patient, only to be told that Jimmie's pain is not dental.  His teeth look good.  His gums are healthy.  Nothing to cause the pain.  I was so sure I had the answer.  I am glad I was wrong.  I am glad I know that his teeth are not causing him pain.  But now I am back where I started.  I have no clue what is wrong.

I feel so helpless.  I feel so inadequate.  What am I supposed to do?

I have been giving him Tylenol and Motrin for a week.  I can't keep that up.  It will only cause rebound pain.

I guess now I call the pediatrician and beg for tests for other things.  Strep.  Infection.  It has to be something.  This is not his personality.  He's a happy child.  He's a loving child.  I can't stand for him to be hurting.  I can't stand that I don't know what to do.  I can't stand that I am losing my patience with my family because my nerves are raw.  These are the people I love most in the world.  

What do I do?

How I came to admit Vivian did not break the dresser glass...

It was ions ago.  I was maybe 3 or 4.   Well I was at least 3.  I got the baton for my 3rd birthday. 

I loved the baton.  But I was terrible at it.  I couldn't catch the stupid thing if I tried.  Well, I guess I did try.  If you consider throwing both hands over your head and ducking trying.  And I marched like an elephant with a thorn in each foot.

But I loved it.  I had visions of ballerinas and cheerleaders.  I had my mother's looks, but unfortunately, I inherited my father's coordination.  It was just never something I would be good at, as a few years in the Legionnaires marching troop a few years hence my story would prove.

My cousin Vivian and I had a strange relationship as children.  I remember being jealous of the attention she got from my mother when she visited.  She called my Mama Dee Dee.  I thought if I called Mama Dee Dee too I would get some of that attention.  Suffice it to say my mother did not take well to my calling her by her nickname.  And Vivian had been for three years before my birth the child my parents were unable to have.  So she was jealous of the attention I received that had been taken from her, whether she would admit it now or not.  I thought she was bossy.  Which she was, but she was 6.  That's kind of a bossy age anyway.

Now, I had the furniture that my mother had as a child in my room.  My mother was a clean freak.  The dresser was topped with a green sheet of glass, so that it could be cleaned with glass cleaner and get clean, but not affect the wood.  And there was that baton.

Vivian and I both wanted to play with the baton.  In the midst of our argument, the baton was thrown, and the glass was broken.  My mother came running.  Vivian swore I did it.  I looked my mother right in the eyes and pointed to Vivian.

My mother believed me.

Fast forward 25 years. 

My mother and Vivian were sitting together at Rudy's (Vivian's eldest brother) wedding.  It was a beautiful wedding at a lovely hotel with an open bar.  They had been fighting for a few years over stupid family stuff, but deep down, Vivian was still the child my mother had doted on as her own and always would be.  The fight was so ingrained that even now, when Rudy's daughter named for both of these women, Ms. Vivian Demitra, acts up, he and his wife joke that Vivian and Demitra are fighting again.  Anyway, at this moment, they were not fighting.  They were loving each other very much and apologizing for years of stupid stuff.  Then Vivian says, "But I swear Dee Dee, I did not break the glass.  Lacy, you were there, who broke the glass?"  I was half in.  I thought for a second.  Baton thrown, hands in the hair, bouncing off fore arms, glass breaking.  I answered slowly, "That would be...me."  My mother gasped in horror.  "Lacy you told me it was Vivian!"  I shrugged.  "Mama, I was three."  Vivian laughed triumphantly, a weight lifted off her shoulders.  Come on, it was just a piece of glass ladies...and did you ever see me throw my baton?  Vivian was six, she could catch the stupid thing.  Why on earth would you believe me? 

But still, it felt good to lift that weight from Vivian's shoulders.  I may have just been a child, but apparently it really bothered her all these years.  She more than paid for the glass in hurt feelings.  So I say again, Vivian, I am so sorry I lied when I was three and told my mother you broke the glass.  I'm sorry she believed me.  I'm sorry it worried you any over the years.  I love you Cuz.  You didn't deserve that.