Why you do NOT have the right to use the word RETARD

I think there is a gross misunderstanding of the first amendment.

Now I am not a lawyer, but I can read, and this seems pretty clear to me:

"Amendment I
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances."


This says that congress cannot create laws that prevent the free expression of ideas.  It does not say you have the right to call people names or belittle or demean them.  It does not say that you are not liable for your words.  The first amendment in no way relieves you of responsibility for the words you choose.

You do not have the right to use language with malice. You have the right not to have the government restrict your use of language with malice.

You do not have the right to keep your job.

You do not have the right to release of liability from slander.

You do not have the right to release of liability from any resulting damage.

And you do not have the right to stand unconfronted. 

And I promise you; I will confront you.

Mysterious Ways

Years ago, after Jimmie had first been diagnosed, I began to spend a lot of time on My Space.  One day, I got a message from a young woman from my hometown.  She was the younger sister of one of my high school graduating classmates.  I happily returned her message and we began a series of Internet conversations.

It was revealed that she was the best friend of a very dear friend of mine who had been killed in a horrific car accident while I was away at college.  She explained to me her part in the accident.  She had been Shelly's alibi, so to speak.  Shelly was still in high school and had been forbidden to see the boy who had been at the wheel that fateful night.  Christal had lied to Shelly's parents, saying that Shelly was spending the night at her house so that Shelly could go out with the boy.  She told me this with a great deal of trepidation.  I believe she was holding onto a great deal of guilt.  I think she, knowing how close I had been to Shelly as well, believed I would hold her guilty too.  Instead, I met her confession with compassion and forgiveness.  I told her that she had been wrong, but that she had also been a child.  It ended tragically.  But the tragedy wasn't her fault.  Over 20 years had passed.  I told her that the Lord forgives when we ask, and all that is left is for us to forgive ourselves.

As our conversations progressed, Christal asked more about Jimmie.  She asked about his condition.  She asked how we (my husband and I) dealt with such a devastating diagnosis.  I told her that I simply give it to the Lord.  The Lord gives us the life he intends us to live.  It is not for us to question it, but to simply live it.  You just DO.  We never really understand what the Lord's plan is until he reveals it.  It is all in his time.  And I believe in the power of prayer.  Prayer strengthens us.  Even if it doesn't seem to change anything, it changes us.  I told her to read the Book of Job.  Through all our trials, the Lord never abandons us.  We should never abandon him. 

She asked.  I answered.

I never preached.  I just answered.

A few years passed.  Christal and I remained in contact, but not as closely.

Then one day, I received a letter.  The letter thanked me (and a few others) for our support and guidance at a difficult time in Christal's life, a time of addiction and loss and darkness.  Christal told me in that letter that I (and others) had been an instrument of the Lord in turning her back to God and helping her to dedicate her life to the Lord.  I was floored.  I was awestruck.  I was honored.  I was humbled.  I had no idea.  I promise you I take no credit.  It was purely the work of the Lord.  She asked.  I answered.  That's all.  That my answers to her questions were among some of the answers that she sought had more to do with God than with me.  She continues to thank me on occasion.  I continue to say it had little to do with me, but I feel immensely proud of her and thankful that I was of use.  I never would have known at all had she not sent me that letter.

Today, Christal is a member of a new Church family.  She is married.  She has a renewed and invigorated relationship with her children.  And she is the author of a new book.  Way to "do" Christal.  You "do" great.   Here is the link to her website and  how to get her book:
http://www.christalware.com/

My Knight in Shining Armor

Yesterday was Father's Day.  My husband enjoyed a day of doing nothing except watching golf.  He received his cards, both the store bought and the handmade.  We played a piggy game where piggies are thrown instead of dice.  Charlie won both times and was ecstatic!  Daddy gave the boys baths.  And by the end of the day, Daddy was a little frisky.

There are times when he is a bigger child than the kids.  And he likes to rough house.  Nothing wrong with that.  He is a big BOY after all.  And boys will be boys.

He decided to bite Charlie's butt.  This particular form of rough housing freaked Charlie out a little bit.  It must be remembered that Charlie is only 4.  When his Daddy let him up, Charlie ran to me crying (completely unhurt of course, just freaked out).  But Daddy being the big child he is, didn't get that the game had gone too far, and continued to threaten to bite Charlie's butt.  David was having a grand time.  Charlie, not so much.

But my heart swelled to proportions unforeseen when David threatened to bite my butt, and Charlie, as fearful as he was, bristled, puffed out his chest, and turned to face his father and told him in no uncertain terms, "NO!  Do not bite Mommy's butt!"   I saw my 4 year old taking on a dragon to protect me!

My hero!

Kisses

BEST MOMENT EVER!!!!!!!!!!!!!!!!!!!!!!!!! Jimmie has been very loving toward me all evening, showering me in kisses and hugs. So at a certain point, David says, "Hey Jimmie," and leaned his head down and pointed to the top of his head. Jimmie looked at him for a second, then puckered up and kissed his father's head. It was the first time I had seen Jimmie ever respond to any kind of a request. So I decided to test it further. I said, "Jimmie, give Charlie a kiss." Jimmie ignored me. I got a hold of him and Charlie, standing in front of me. I said, "Jimmie, give Charlie a kiss." He tried to pull away. I held his shirt, and said, "No. Stay. Give Charlie a kiss." David said, 'No it's okay." But Jimmie looked at Charlie, who smiled at him, and puckered up, leaned in, and kissed Charlie on the nose!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Black eye peas for a prosperous New Year

It's true.  It actually is a tradition.  Black eye peas for a prosperous New Year.  And it has been passed along down from our line out of Tennessee.  It is a Southern thing after all.  I've read that it started during the civil war.  I only know that my mother (whose mother was a Ford - and yes one of those Fords - those two brothers who murdered Jessie James were her great uncles) had to have them every New Year's day.  It was as much a part of our celebration as watching the ball fall the night before.  And I am a stern taskmaster of keeping tradition.  My husband refuses to eat them.  Fine.  I'll take all the prosperity for myself.  Besides I actually like them.

This year, I am going whole hog (so to speak).  I actually bought the dried bag of black eye peas.  Yesterday, I cooked a delicious honey glazed ham.  Tonight, the beans and the ham bone will go in the crock pot with some onion and celery and chicken stock for a nice long simmer.  I defy anyone to not want to eat these black eye peas.  Yum. 

Crochet

I miss my mother so very much.  She was a great mother.  She cooked.  She sewed.  She crocheted. 

Every fall, I catch the bug, but this winter I really caught the bug.  If I am sitting, I am crocheting.  I have made 20 or so hats.  I have made several scarfs.  I have made an afghan as a gift for a baby (leaving it at that since it is for Christmas).  I have made Jimmie an afghan.  I am working on one for Charlie.  I have another one in the works too.  And today, I started yet another.

This one gives me a special connection to my mother.

In 1998 my mother was diagnosed with interstitial lung disease, a complication of her scleroderma.  She was given a 50% chance of surviving beyond 5 years.  She lasted the 5, passing in 2003, just two weeks after my wedding.

It was not a pleasant death.  She was in a lot of pain.  She was tired a lot.   And she couldn't breathe.  In the end she was on oxygen 24 hours a day and had to use a chair because she couldn't exert herself to walk.

On a visit from my aunt in the last two years before she passed, they sat and crocheted.  Crochet did not tire her.  My mother worked on an afghan intended as a gift for my cousin Joey and his wife, who at the time were expecting their first child.  It was beautiful.  Reversible, peach on one side; cream on the other.

My lovely sister in law gave me a baby shower when I was pregnant with my son Jimmie, before my world fell a part.  My aunt and cousins were naturally unable to attend, living in Massachusetts, while we are in Illinois.  But they surprised me by sending gifts to my sister in law for the shower.  Included among the gifts, intended as a gift from my mother, my aunt had sent the afghan, retrieved from my cousin, unused.  It was the gift that caused the tears to flow, especially as I read the note my aunt had included.  And as I cried, so did the entire room.

The afghan is an important item in our household.  My husband loves it as much as I do.  And the more I crochet, the more my husband points to it and says, "Make one like that."

Well here is my first attempt:

The Voice

I was reminded this morning of two experiences.  The first was easy.  It was a simple experience of love.  Love for me.  Love is easy to receive.  The second was difficult, because while there was love, there was also disappointment and judgement and a revelation of self that was not so pleasant.  I believe I needed to be reminded of these things. 

The first time I heard the voice, I was in college, home on break.  I was in a crisis of faith.  I was aware that the feeling I had had as a young teenager, of the presence of the Lord in my life, had faded.  As I lay in my bed and prayed, I asked the Lord where he was, why I could no longer feel him.  It was then that I heard the voice.  It was familiar.  A real voice.  And at the same time, not a real voice.  I knew that while it was audible, it was only audible to me.  It came from inside me, but also around me.  It told me to listen.  But I was stubborn.  The voice became more insistent.  It called me by name.  "Lacy, Stop.  Listen."  I stopped.  I listened.  My radio was on.  Stryper was playing.  "Honestly."  

[ Lyrics from: http://www.lyricsmode.com/lyrics/s/stryper/honestly.html ]

Songwriters: MICHAEL SWEET

Honestly
I believe in you
Do you trust in me?
...

Patiently
I will stand by you
I will stand beside you faithfully

And through the years
I will be a friend for always and forever

Call on me and I'll be there for you
I'm a friend who always will be true
And I love you can't you see
That I can say I love you honestly

Call on me and I will be there for you
I'm a friend who will always be true
And I love you can't you see
That I love you honestly
I will never betray your trust in me
And I love you can't you see
That I can say I love you
Honestly

 

At the moment I was asking "Where are you?" the song answered "I will stand beside you faithfully."  I just had to listen.  The answer was there. 

 

It was a sweet moment.  A moment of renewal of faith.  It was good.  But as wonderful as this moment was, it was not the moment that changed my life, that changed me as a person.

 

That moment would not be so pleasant.

 

Several years later, after I had graduated, after I had tried living in Norfolk, after I had tried living in Canada, after I had returned home, I was working as a temp in Washington, DC, trying to make ends meet, living at home with my mother and stepfather, driving a wrecked car my father had given me, driving on change and a prayer.  It had been a long day.  Those who know DC know that there is a large homeless population.  A very aggressive population.  They beg.  And they rarely use the money for food or shelter, preferring to feed their addictions.  Of course this isn't always true (again years later, I would be approached by a homeless man in DC who asked me for money when I had none, and whose gratitude was abounding when I offered a coupon for a free burger from McDonald's instead). 

 

But on the day in question, all I saw in the beggars were junkies and drunks.  As I was sitting in traffic, trying to cross the 14th street bridge into VA, I saw him.  He was a young man.  Early thirties.  He was dirty.  Long brown hair.  Beard.  He stood at the center of the bridge, in front of the jersey barriers separating the opposing lanes of traffic.  Hands outstretched to each side.  He had a sign leaning against his bucket sitting at his feet.  I don't remember what the sign said.  Something about will work for food or being homeless and needing money.   I gave a judgemental snort.  "Oh look at this, it's Jesus Christ."  It was an ugly moment.  I am not proud of it.  But that is what I thought at that moment. 

 

And then I heard the voice.  Deep, masculine, loving, and disappointed.  Kind still.  Loving still.  But clearly disappointed.  Again, it was audible, but not audible.  I knew that had anyone else been in the car, they would not have heard it.  It came from inside me, not my head, but my gut.  And it came from around me, behind me, beside me.  I actually heard it.  But I also felt it.

 

He said, "Lacy, as you have done unto these the least of my brethren, so you have done unto me." 

 

I felt the tears welling up inside me.  I was a monster.  I was evil. 

 

I rolled down my window as I approached the man on the bridge.  He smiled and approached my window.  He reached out his hand.  I dumped my purse into my lap and gathered all the money I had left, change, and placed it in his open hand.  I allowed my hands to touch his.  I felt the tingle and electricity shoot through my fingers to my very core.

 

"God bless you," he said.  I can't tell you it was the same voice.  I can't say that with absolute confidence.  But in my memory, it was the same voice I heard speaking to me alone in my car.  Whether I heard it the same or whether it was the same or I only remember it as the same is not really the point. 

 

Judge not, and love one another.  My moment of hatred, answered with love and a blessing on me, that was the moment of change.  It was not easy to feel the judgement that I deserved.  Honestly it wasn't even a small portion of what I deserved, but any judgement was just.  The fact that it was tapered with love and grace only cements our Lord's saving nature. 

 

Mythology

My sister called me tonight.  Well, she actually called several times.  We speak on the phone most days.  But tonight she and her husband were watching the 1981 version of Clash of the Titans.  This had started a conversation between them and a bevy of questions for me.  These questions may not be in the exact order, but this was the crux of the discussion:

Was this from Homer's Odyssey? 

No.  It's just a myth. 

But then what book? 

Well, it's mostly from oral tradition and written in many books. 

What is the Odyssey? 

It's the story of Odyseus, who having fought in Troy with the Greeks, and having angered Poseidon is trying to make his way home to his wife and son and his 20 year absence (10 in war and 10 getting home).  Oh Brother Where Art Thou? is based on the Odyssey.  It's the followup to Homer's Iliad? 

What's the Iliad? 

The story of the Trojan War.

Okay, so back to Clash of the Titans, is this the guy who is chained to a wall? 

No that was Prometheus.  He was chained to a cliff and everyday an eagle came and ate his liver, which his being immortal, grew back for the eagle to return to eat the next day.  It was his punishment for giving man fire. 

Okay, but Percy Jackson is Perseus. 

Yeah, kind of. 

What about the sequel? 

There is no sequel to the original Clash of the Titans.  The new Clash has a sequel.  None of that occurred in the Greek Myth. 

So Perseus never goes to Hades? 

No.  Only one living person ever descended into Hades and returned.  Orpheus went into Hades to bring his wife out. 

So What Dreams May Come comes from a Greek myth? 

Yeah in essence it does.  Only he never gets her out.  He turns around and she is sucked back in.  He spends the rest of his life mourning her.

I don't know how she knows this stuff; she just does (to the voice in the background). 

To be fair I had to look up Orpheus' name.  But I knew the rest of it.  Why?  I read a lot as a kid, including the Iliad and the Odyssey.  In grade school.    And I have a memory like a steal trap.  Encourage your kids to read.  Someday, they might be able to answer a bunch of questions from a sibling.  :)

All in all the conversation left me feeling very good about myself and my brain.  With two little children I swear I am losing so much of my intelligence.  I don't feel half as smart as I used to think I was.  I appreciated that she called me to ask me these things instead of just looking them up on the Internet.  It gave me a chance to reach into the recesses of my memory and bring out some old data.  It's a very good exercise.

I haven't felt this brainy since I answered all the questions on the Trivia Pursuit card when I won last time I played my husband.  He had to ask me every question on the card after I answered the sports question correctly to see which one he should have picked, and then I answered each one correctly, and it blew his mind!

I really need to feel smart.  It is both a good thing and a bad thing.  I can offend some people with my need to be smart.  I can come off like a know-it-all.  In truth I know I don't know everything.  But I sure do like being right.  And that is a character flaw.

But at least tonight I got to feel like the brainy kid I used to be without offending anyone.  Thank you Tammy for allowing me the opportunity to answer your questions and for allowing me to be a know-it-all.  I sure had fun!

What the future may hold...

I suppose it is natural to speculate on who and what your children will grow to be.  As far as I am concerned, Charlie can be whatever he wants to be.

His father has plans though.  Plans that take Charlie along a path that would be his path if he had things to do over.  Military.  College.  Homeland Security.  Secret Service.

I don't see it.  I don't think that Charlie will be able to divorce himself from his responsibility to his brother.  At three he is already Jimmie's caretaker.  He helps me get diapers, and he picks up after Jimmie.  And he explains Jimmie to strangers.  I've heard him say many times when people speak to Jimmie, "He doesn't talk."  To my sister, when she opened the car door and greeted Jimmie, he said, "That's my brother.  He's a happy boy."   I can't see him protecting the president at the expense of  his own life, knowing his brother needs him. 

I also watch this very sensitive, loving young boy every day.  I see him tuck in his teddy bear and read it a story.  I see him pick up a notebook and pretend to be a doctor and clean his brother's feet.  I see him dress and undress the stuffed animals.  And yes I see him play with baseballs and hit them off the tee like a big league player, and throw footballs, and play with trucks in the dirt, and even play with toy guns.  But he's a boy.  That's how boys play.  And while that boy part is so very like his father, he is growing up knowing that his brother is not like other kids, and that he is somehow the "big" brother even though he is younger.  He gets it.

I don't think he will ever be in the secret service.

But if he should choose that path, then I will support it.

How To Build a Coke Box Train:

How To Build a Coke Box Train:

Last night Charlie asked me to build him a train from all the coke boxes we had waiting to go out to recycling.  I looked at it and said, "Ok, buddy.  I can build a train."

 The cars were easy, I just glued two coke cans to the "bottom" of the 12 can boxes.  The engine was a little more challenging.  I used a 24 can box for the main body.  I then cut another 12 can box in half at the middle.  I taped the half box to the narrow side of the 24 can box.  I glued a coke can to the top of the half box as a smoke stack, slightly off center.  I then cut a semi-circle from the top of the remaining unused half box, and glued it to the front of my train as a cow catcher.  Two more cans at the bottom of the engine completes the basics.  Then a string at the front to pull it by, and strings to couple the cars to the engine and the coke box train is complete!

Well that hit me up side the head like a ton of bricks!

Today is one of those days.  I have mixed feelings.  On one hand, I am happy that my son is getting to go to pre-school and that we are giving him every opportunity to excel.  On the other hand, I feel like someone just punched me in the gut.  Cognitive delays?  Really?  I was only concerned about his speech being a little hard to understand.  But I never imagined that his social skills were delayed.  I never imagined that his cognitive skills were delayed, that he was too easily distracted.  And that his speech was in fact fine.  I'm at a loss.  Charlie's so smart.  He grasps what I think to be complex concepts.  He has a very active imagination.  He loves his books.  He is compassionate.  He is loving.  And potty training him was a breeze!  He caught on immediately.  It took a bribe to get him to use the potty for bm's, but once he got that, he has been perfect.  He never has an accident.  Never.  His gross motor skills are advanced.  Where did this come from?  How did I miss it?  Granted, I don't have a normally developing child to compare him to.  Compared to his brother, Charlie is miles ahead.  But still.  I just didn't see it coming. 

I really thought that we would walk into the Parent/teacher meeting and be told that Charlie did not need pre-school. 

He is excited about it.  He is ready to learn.

And he does need the social interaction.

But still... I just don't know how to feel.  I almost feel like I am failing him somehow.

Silly, I know.  I mean, I am the one who asked for the evaluation, so I must have had some inkling, some tickle, other than knowing that his brother is so far behind and being overly cautious.  And I am the one who followed through and took him for evaluation, even though I was telling myself it was a waste of time.  I am the one sending him to pre-school as a result.  I am the one giving him everything I can to help him.  But I still feel like I have failed him.

I'll get over it.  It's a selfish feeling.  Time to be selfless for my youngest boy too.

Princess Samantha's wedding and all I have missed...

Suddenly Samantha is 21 years old, and, even more suddenly, she is married.  Gone.  Half her life.  I moved away to find my own life in 2001.  In 2012, the little girl I loved as my own, whose sweet kindergarten gift of a key chain that reads #1 Aunt still holds my keys, who I took to ice skating shows and baseball games, who I had to seek out in the dressing room when her Grannie made her try on a dress she thought was way too girly because she discovered the twirl of that baby doll skirt in the 3 way mirror, who I had stay nights and weekends with me, who I took to mass, who I loved so very much, but who I left behind for the man I was meant to be with, became an adult in the eyes of the law and a wife in the eyes of the world, and I have missed it.

I admit with a grateful heart to feeling jealous that her other aunts prepared her reception meal so beautifully and lovingly.  Oh yes, it's nice.  Wow!  What an amazing gift ladies!  You deserve a ton of praise.  Ah, but I was that aunt, not you.  I was.  And then I was gone.  I am so glad that you are there, and that you are there for our beautiful princess, for truly she is our niece, not mine alone, but I am sure you know exactly how I feel.  I am sure at some point, Samantha was gone with me, when you had wished her with you.  I am so happy that you were there.  So happy you enjoyed her day and blessed her day with your loving care.  And I am so sad I missed it all.

I celebrated Samantha's wedding by watching "Say Yes to the Dress" and "Four Weddings".  And watching my 5 year old destroy the house again.  Paper everywhere.  Laundry everywhere.  Things thrown just to be thrown.  Anger just because.  I love this child with all my heart.  And I make sure he does not hurt himself in his tirades, or his brother.  But I feel helpless to stop them.  And I know had we had the funds and the time to attend Samantha's wedding, I would have spent the entire time chasing Jimmie...or David would and then he would be mad that I didn't chase Jimmie enough.  Life is very isolating when your child is in destructive mode and you don't know how to fix it.

Tomorrow he has an appointment for a neuropsych evaluation.  God I hope we get some answers.  I really want to enjoy my sister's wedding in April.

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?