My baby’s all grows up

Once upon a time there was a little boy… (click there <– to watch him – there’s no audio)

Jacob started 7th grade yesterday. I remember when I started 7th grade. I remember the boys in 7th grade. I remember why I dreaded the day when Jacob would be in 7th grade.

Fortunately, Jacob isn’t like many of the boys I went to school with. Not that they were mean or bad. But many of them were too cool – or at least they thought they were, and I have to confess, so did I. Jacob is cool, but not in a cocky sort of way.

The cool boys in my school were good at blending – meaning they all sort of looked alike, acted alike. Of course, maybe that had something to do with the fact that they were all wearing the same Catholic school uniform – dirty gray slacks (not pants), and a pure white shirt.

I don’t think the gray and white were chosen by accident either. I believe that the powers that be were sending a pretty clear message to the boys – from the waist down = dirty parts sure to secure you a seat next to Satan on the Eternity train – from the waist up = the seat of all that is pure and holy. Our skirts were plaid, not sure what that meant – maybe all the lines represented an intricate network of boxes to remind us to keep it all locked up.

Anyway, as I was saying, Jacob is not a blender. Never has been. There have been days when I’ve wanted nothing more than to have him blend because his Tourette’s made him stick out, but, in reality, I’m grateful that my boy hasn’t fallen victim to the Smoothie Syndrome.

I’ll be interested to see how being nearly 13, nearly hairy, nearly deep-voiced will change Jacob. But I don’t think I’ll really see any negative changes. Jacob’s just different.

He’s a yes ma’aming, door opening, follow the rules kinda guy. He’s a give the homeless guy his money, thank the soldiers for protecting our country (every single one he sees), say a prayer for passing ambulances kinda guy.

And no matter the changes that take place, he’ll always be my kinda guy.

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Five Things Friday – Great things my kids have said

My witty kids

My kids are never at a loss for words.  Never.  No idea where they get that from.

Anyway, I thought I would share some of their words with you all today.

Jacob having a Beatles kind of day

Jacob

1.    age 6 – “Why did the people crucify Jesus?”  I told him and explained that Jesus rose from the dead three days later and went to heaven.  Jacob’s reply:  Boy it sure does take a long time to get to heaven!

2.    age 7 -  Eating macaroni and cheese at Shoney’s one day: Take a fork and enjoy the taste bud ride!

3.  age 7 – A frequent party of one, one day Jacob was having a solo conversation in the backseat.  We were the only two people in the car.  Here is what I overheard: Don’t make out with my momma.  She’s already made!

4.   age 9 – Speaking to me: You can be an aggressive mean young woman sometimes.  And don’t go running away like you did yesterday.  Sing a different song.

5.   age 8 – I wish Nick would just go to sleep because he’s so cute I don’t want to do anything else. He couldn’t stop looking at Nick.

Nick having a special moment at BK

Nick

1.   age 3:  Said to me:  I’m watchin’ you hothead!

2.   age 3.5:  On the way down the stairs Nick looked back at me and said: Don’t look at me SUCKA!

3.   age 3.5:  When I was trying to get Nick down for a nap he was being too wiggly.  I told him to be still and he said: I’m just trying to get separated!

4.   age 3.5:  As he was rolling the dice during a board game he gave us his take on “baby needs a new pair of shoes”: C’mon I need a new pair of short sleeve pants and shower pants!

5.   age 3:  This was Nick’s evening prayer one night: I pray the lamp to my heart.  I see the bats in the moon.  Amen.

And there you have it – the wit and wisdom of my two boys!

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My Life in Letters – “T” is for Tourette, Tic and Twitch

Jacob and one of his amazing counselors Rhett

I just got back from picking my oldest up from summer camp.  It was exactly what you would expect from a summer camp – swimming, archery, fishing, arts and crafts, s’mores and campfires mixed with the noise of a hundred plus excited kids.  Some of the noise, however, might surprise some people – grunting, snorting, barking, screaming the sound of a hundred plus kids who have Tourette Syndrome (TS).

Jacob and his counselor Ayan

For these kids Camp Twitch and Shout represents so much more than a chance to  experience a parent-free week surrounded by new friends and plenty of fun.  Camp Twitch and Shout is a refuge for many of them, maybe the only time during the whole year when they can tic without having people judge them.  And for the parents who entrust their children to the camp counselors for 5 days with absolutely no contact, Camp Twitch and Shout is perhaps the only time when they can rest easy knowing their children are not being bullied or made fun of.

Landon, Jacob and David

During the closing ceremonies on Friday I sat back and watched these kids in amazement. One child was pounding his fists into his thighs as hard as he could.  One little girl let out a shrill scream to rival that of any horror flick.  Each one of them struggles on a daily basis to have some control over the tics that have taken over their bodies.  And yet I saw nothing but strength in every one of them.

One of the counselors took the stage and spoke to the crowd.  “I just wanted to say that this is a camp for kids with superpowers.”  At that very moment one of the younger girls screamed.  “See,” he continued, “there’s one now.”  Another camper ticced.  “And there’s another and another over there.”

And I couldn’t agree more.  Are these kids different?  Absolutely.  And although to many the differences to be seen are only the obvious ones, the ticcing ones, to me and to every other parent of a child with TS, the differences go far deeper than that and only serve to validate what we have always known in our hearts, our kids are superheroes.

Our kids are different because they get it.  They live with adversity, so they will seek to banish it in the lives of others.  They stand out wherever they go and it’s not because they have TS, it’s because they are accepting of others who are different.  They are compassionate and tolerant and seek justice for all regardless of what their challenges might be.  They are fearless and truly extraordinary.

How lucky are we as parents to be raising  a new breed of superheros who are certain to make the Justice League look like the comic book characters that they are?

Truth, justice and Tourette Syndrome – history in the making.

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Ripples

photo credit: Marc A. Sporys

“Good Ripples” from the TV show Joan of Arcadia. The term is used when a person’s actions (however small) end up having a positive outcome. ‘Good Ripples’ are felt in just about every episode of the show as God asks Joan to do small or big tasks which sometimes seem to her to be pointless. Joan doesn’t always see the positive effects of her actions, but that doesn’t mean they aren’t significant. -excerpted from Urban Dictionary

If you’ve ever dropped a stone in the water, you’ve experienced the incredible difference one small action can make.  Just watch the ripples vibrate out from the center and dance across the water’s surface – that’s how karma works – with a rippling effect.

Imagine yourself as the stone that has been dropped onto the Earth and open yourself up to the possibility that you can have that same rippling effect.  But ripples aren’t always good and that’s something very important to know.  It doesn’t matter what kind of stone is dropped there will always be resulting ripples.

Someone dropped a stone in my pond today, but it was more like a heavy boulder being catapulted from across enemy lines.  Bad ripples all around.

I was sitting in Atlanta Bread Company this morning having my coffee when a man approached me and struck up a conversation about my Apple computer.  The ensuing conversation revolved around my writing and the subjects that I enjoy writing about. 

I began to tell him about Jacob and my passion for educating others about Tourette Syndrome.  Before I could say much more he said, “So does he go around yelling screw you to everyone?’  And he started laughing.  Bad ripples.

I rattled off my usual explanation of coprolalia and explained that only 10% of those with TS have this form, yada, yada, yada.  My ears were buzzing and my heart was racing.  I was infuriated and yet I said nothing more about it. 

It wasn’t until he left that the effect of the ripples hit me.  As I replayed the conversation in my mind I remembered him saying that he was a local family practitioner.  A family doctor!  A doctor who knows better than to make fun of someone who has a medical condition.  The more I thought about it the angrier I got.

I had a decision to make.  I could continue the bad ripple effect by brooding over this and spreading bad ripples all over town or I could do something productive to turn those ripples into good ones.

Fortunately, I’m a good ripple sort of girl, so I decided on a two part plan of action.  First, I felt the need to write this post to remind others of the effect even the smallest comment can have on a person.

Second, I realized that the bad ripples were still there because I felt like I had let Jacob down by allowing this man to get away with what he said without letting him know that it’s people like him, who feel the need to make a joke about something serious, who are the ones that perpetuate the very stereotype I am working so hard to dispel.  As Jacob’s mother how could I sit back and let this man, this doctor, essentially make fun of my child?

He will be back for his coffee tomorrow and I will be waiting to cast my stone into his pond.  I won’t be angry.  I won’t be argumentative.  But I will be an advocate for my son.  I will let this man know that my son, and others like him, deserve more than to be the butt of some ignorant joke.  I will let him know that as a medical professional he should have known better.  And I will leave him with my good ripples.  Ripples from a mother who loves her son as he is.  A mother who wants a world for her son that is not filled with bad ripples.

What kind of ripples will you make today?

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Five Things Friday – Great things about Jacob’s Tourette Syndrome

Jacob the Human Beatbox

Jacob’s tics have been pretty high lately.  In an effort to alleviate some of the internal tension that these bouts often cause me, I thought I’d create a list of good things about Tourette’s.  I could focus on the negative impact that TS has on Jacob’s life, but that doesn’t accomplish anything – it just perpetuates that negativity. Understand that I am in no way poking fun at Jacob’s TS, it’s a very real, very serious thing to me, but I do think sometimes you just have to lighten up to get through the tough times.

1.   Human Beatbox – On his high tic days Jacob could very easily give Bobby McFerrin a run for his money.  TS coupled with OCD tendencies gives Jacob a rhythm all his own – no music required.

2.   Why be normal? – I don’t know if any of you remember that bumper sticker from way back when. I’m sure they sell it still.  Warner had it on his car, upside down, a true testament to individuality.  I’ve always embraced those things about me that are the real me.  The things that make me different.  The fact that I love bats.  That I prefer melancholic songs.  Things that make others say that’s just how she rolls.

Having Tourette’s is a guaranteed ticket to never being “normal” whatever that is.  I’ve always told Jacob that being different is a good thing.  How boring would it be if everyone was the same?  Make yourself known.  Stand out in a crowd.  And honestly, it’s one of the things I love about Jacob.  It’s not the only thing that makes him stand out, for sure.  But it is something that will always set him apart.  That won’t always be a comfortable thing for him, and TS certainly does not define him, but it is a part of him.  It’s just how he rolls.

3.   A free pass – Jacob has never used his Tourette’s as an excuse…at least not that I’m aware of.  But one thing’s for sure, I can never get mad at him for being loud.  He can always trump me with but I can’t help it, it’s a tic.

4.   He’s blessed – One of Jacob’s tics is a sneezing tic.  As a result of this Jacob is probably one of the most blessed kids I know.  Several times a day he hears, God bless you.  How nice to be the recipient of so many well wishes.

5.   I can never lose him – When I am in a store and Jacob has gone off on his own to explore whatever it is that 12 year old boys explore, I never have to worry about not being able to find him.  He usually has his phone with him so I can just call him.  But on the occasions when he has forgotten his phone, or won’t answer it, all I have to do is follow the sound of Jacob’s tics.  It’s sort of like a land lubber’s version of Marco Polo.

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The Beginning of my last year with my tweenager

Starfaced Jacob

Jacob celebrated his 12th trip around the sun on February 16. We celebrated his birthday on the 13th with a party for him and his friends.

As usual, I was up until 2am the morning before making the cake. But I think it was my best one yet.

One-up Cake

I also made brick cupcakes with gold coins on top.

Mario brick wall cupcakes and coins

The party was a hit.  I found these superawesome goody balls that – just like oversized gumball machine balls filled with prizes – at Party City and filled them with Pop rocks, chocolate coins, Warheads and magic cards.

After cake and ice cream the boys all headed outside for a Nerf gun war.  Nicholas held his own on the battlefield fighting right alongside the 12 year olds.

The real birthday surprise came the night before though.  While I was making the cake, I was also keeping an eye on the weather.  The temp was dropping rapidly and it was raining.  I could hardly believe that the weatherman was calling for snow.  I promised Jacob and his friend Hunter, who was spending the night that I would keep checking outside and let them know if it started to snow.

And it did!  It’s been 20 years since I’ve seen snow in Savannah!  The boys have never seen it, so it was a real treat, an early birthday present for Jacob.

We threw on whatever winter gear we could find (which believe me wasn’t much considering we never really pack up our summer clothes here), and we went outside and played in the snow.  Our neighbors down the street came walking over and we all had a snowball fight.  I’d say we got maybe an inch, but it was enough to make a few good snowballs. In fact, Jacob nailed me right in the side of the face with a huge one!

The best birthday gift ever - snow!

A VERY happy Jacob!

Jacob was completely under-dressed.  His winter gear consisted of jeans, a short-sleeved t-shirt, a jeans jacket and a knit hat.  He actually wound up getting snowburn on his belly!

Nick in his mismatched "winter" gear!

Nicholas had to keep going in and out to warm up.

Snowbob Nick

On Jacob’s actual birthday, February 16, we took him out to dinner at the restaurant of his choice – Ryan’s, where he loaded up on yeast dinner rolls with honey butter, macaroni and cheese and chocolate cake.  YUMMY!

Warner gave Jacob the Matrix movies on DVD.  My gift was a bit less conventional.  Several months back Jacob came to me and asked if he could say the “C” word.  That’s the kind of kid Jacob is.  He could have gone ahead and said it and I would never have known, but he didn’t.  He asked for permission.  I denied him rights to the “C” word because I told him there were plenty of other good words out there that he could use to express himself.  But I also had another plan in mind.

Jacob get's the "C" word as a birthday gift!

What a very special present for my son!  I also gave him the traditional lottery ticket gift – 12 this year and he won $8.  And I gave him a wristwatch.

It was a good day for him.  When I asked him what his favorite gift was he said my word gift rocked!  Well, crap, if I had known that I wouldn’t have spent money on the watch and lottery tickets!

Jacob and Nick scratching off lottery tickets

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Moxie talks about Tourette’s and how it has affected the family

The sound and video are off on the clip so you might just want to listen to it and not watch it. Just sayin’.

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Moxie talks about Jacob’s Tourette’s

This was part of an interview that we did for a possible documentary that never came to be. Jacob is the one behind the camera, so you can hear him ticcing on and off. There’s also a great deal of wind noise.

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1998 Revisited – Jacob Riley McGee is born!

The one who wrote my heart

It’s hard to believe that 12 years ago today I gave birth to the one who would inspire me to write a book – Jacob Riley McGee, my first born.

Here is an essay I wrote shortly after Jacob was born – an account of that first meeting with the child who would forever change my life.

“The Great Ride”

It was raining that night. A loud lingering thunder mixed with the incessant buzzing of the hospital lights. At 3 in the morning there were few other sounds, the hospital seemed less awake than I did. I was waiting. Waiting to hold my son who at nearly 9 hours old had already taken up permanent residence in my heart.

The phone rang. I wondered who could be on the other line at such an ungodly hour.

“Hello?” I said.

“Hey Chell,” said a familiar voice somehow changed now, somehow softer now. “I was sitting here working on a drawing of a rollercoaster full of animals, but my mind kept drifting to you and the boy. How are you?”

“I’m tired,” I said, “but I can’t sleep. I just can’t get enough of him. When they take him for me to get some rest, I just sit here waiting so I can see him again. Is all of this real?”

“I know what you mean, Chell. I think I’m going to come back up there. I just can’t stand to be away. It seems silly for me to be here while my family,” he paused here savoring this new idea, “I’ll be there in a minute. Is there anything that I can bring you?”

After a not so tasty dinner of cold, rubbery grilled chicken and leathery green beans, I could only think of one word. “Snickers!” I said almost too enthusiastically. “No, make that two, I’m starved.”

With a laugh, he agreed to bring me my well-deserved indulgent dinner.

As I sat there waiting for Warner to come back to the hospital, I realized that not only was my son newly born, so was I. Here I was 9 hours earlier just a woman, sensing the changes ahead, mostly changes like sleep patterns and social activity. But now, I felt it so much stronger. All of a sudden my focus had shifted and instead of one, I was two, mother and child, and I was now capable of loving with no reserve.

The door pushed open and I was returned to the clinical feeling room void of all that was baby.

“Did you bring me my two Snickers?” I asked hopefully, my stretched out stomach growling hungrily.

He handed them over and within minutes those candy bars were gone. I have never eaten candy bars with such relish and so little guilt. Satisfied at last I glanced over at Warner who seemed different. When he looked at me, he seemed to see something I could only feel. We both knew that things had changed between us. Overhead the ethereal sound of “Rock-a-bye Baby” drifted through the speakers announcing the arrival of yet another miracle. Tears slipped down both of our faces as we relived the birth of our family just hours earlier.

The door opened again and there he was in the nurse’s arms. “This little guy’s hungry,” she whispered. “Momma are you ready for Jacob?” Am I ready? I couldn’t put into words how very ready I was to accept this beautiful boy placed before me. I reached out for my little round-faced wide-eyed miracle wrapped so tightly in his blanket I wondered if he could even feel my touch. Once I had him, I began to peel him from his protective coverings to expose his petal soft skin, so perfectly pink. He opened his eyes and searched me. What was he looking for? Would he find it in me?

After Jacob was full and resting peacefully, I knew I could sleep knowing my family was together in one room. Warner reached over to take his son, our son and kissed me on the forehead. We were complete. As I drifted off needing no dreams because mine were all in this room, Warner held Jacob. I remember hearing the scratching of Jay’s pencil in his sketchbook. Imagining the rollercoaster that he was finishing, I wondered if we, too, were about to start our great ride.

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My Funny Valentines

I found these superawesome lip lollipops at World Market and had to get them. We had a lot of fun with these photos. Happy Valentine’s Day!

Air Neutron

Me and my guy!

My Funny Valentine!

Whole lotta love goin' on!

Lotsa Lips

You look good to me!

Lippy Nick

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