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.