Mon Petit Mec

Parker is my little guy.
I like the phrase in french, 'Petit Mec'.

He shines.

He smiles.

He runs.

He grows.

He no longer runs to my bedside when he wakes up in the morning.
I hear him go straight for the kitchen where he likes to play cars on the wood floors.

I have been sick about him lately. Physically and emotionally....Since the summer, actually. And what to do about him/with him/for him. And his schooling.

It's a hard job being a mom.
We are always worried about our little people.
Add a handicap, and I think the worry multiplies exponentially.

But at the same time, there is some reassurance that while I think I control my environment, I have conceded some time ago that all is in God's hands. I am just a tool in His hands. I have my agency, yes, and I do my best to do what I think is right. But in the end, I feel, especially when it comes to my Little Guy, Parker's life is in God's hands.

We're looking for better schooling solutions since where we are now just isn't optimal for him. And one doctor recently said at the deaf school, 'On cherche la solution le moins pire."... It means, "We're looking for least bad solution."

Of course I want much MORE than the least bad for any of my children. I want the BEST.

I'm considering something drastic. I think we need drastic.

But then I was talking with someone yesterday, a wise woman who said to me, "But---Who wants him to catch up??"...I had to stop myself and think before I responded, "Me".....and I felt that that was wrong somehow.

Then we had a house full of people over for dinner last night. And one friend of mine said, "I think of Parker like a little Messiah." I had to ask for clarification. I didn't know the word in french. All of what he has been through and his miraculous swimming pool story after the meningitis and everyone fasting 3 days to save his life...add the Jerusalem hotel incident. To her, that makes a Messiah.

And it made me think.

We talked about peace and how sometimes we feel peace during a trial--- and then, the outcome is not what we expect, after those feelings of peace. But the peace doesn't necessarily mean that all will be returned whole.

Or the whole is different, or much later than we assumed or expected.

And how that is just plain hard, and confusing sometimes.

So I ask myself:



"What's my role here?"


Make him the best that I can???
School him and change him & challenge him the best that he can/we can/teachers/professionals can????

Or just love him & teach him and watch him grow??





I think he will continue to touch us and teach us as he does so....

Whatever that means for us, for him. Whatever that means by way of schooling.

I sometimes feel I am in a different school. On a different plane. My life was so simple and fun before these twinnies were born, and before this little boy got sick. But I definitely lacked the depth and richness in compassion and understanding that I have now.

This school is tough.

Ahhh-

Mon Petit Mec.

I love that guy.

I love that smile, that hug, the way he purses his lips to kiss me, the way he says,"Stay there" while he runs to get something. Or says,"Sit down" when he wants me to cuddle him in his toddler bed.

The way he laughs and runs ALL THE WAY TO SCHOOL.

And how he belly-laughs with joy in looking at a pigeon, or an autumn leaf in the park.

Or how when I scold him for running into the street or something else,and I tell him he's not allowed to do it again and I ask if he understands, he says,with his lips quivering and his eyes batting,"OKAAAAAY".

Mon Petit Mec. A moi. Qui Devien GRAND. Right before my eyes. I love love love him. Mon Petit Mec.

HOW HANDICAPPED ARE YOU??

I have sooo very much to articulate, I find it difficult to navigate, not to mention know where to begin:

 Since we've been talking cognitive testing, hearing testing, vision testing, visual-spatial testing, strategies-testing for Parker for the past several months, I could add articulation testing too. For him, and for me..AND three of his sisters. I feel like we are all being analyzed all the time by linguistics professionals, and I think my speech is actually deteriorating. But I digress....

John Tracy Clinic was amazing this summer. We learned a ton. Literally my spirit & brain was steaming at the end of each session. I needed a few months just to process what we witnessed and participated in. It was truly overwhelming/in-you-face-terrifying and magically healing at the same time.I will post later about that.

We also had Peej tested on his cognition while we were in the US this summer, because his french neurologist thought it would be more accurate in English given that he has shown a clear preference to English. (The phrase "Mother Tongue" takes on a new meaning when you are carried on your mama's hip essentially 24/7 for a few years, listening primarily to and trusting mostly her ...and when you come back from a near-death experience, I guess your chances of becoming a TRUE MAMA'S BOY increase exponentially. That's ok. But it makes sense that he prefers English, doesn't it?? Not to mention add 4 lively sisters in the bunch, an awesome babysitter, a very BIG, very commanding and yet gentle PAPA who speaks english, and you've got a recipe for ANGLO-FUN, right?)

Anyway, here's the low-down--

Cognition---Parker came in about 11 months behind (at 48 months, he tested at a 38 month old level). When I tell people that, they seem surprised. This is NOT reassuring (they seem to think he should fall in the 2 yr old category, not 3 yr old category).

Vision--I had Parker tested at UCLA this summer (cost a fortune) after seeing a very old, very self-assured French Dr in Paris before leaving who wanted to dilate Parker's eyes for TWO WEEKS at the beginning of the school year. I snuck out the door and tried to find people who agreed with me that he was CRAZY! UCLA was great, and fit us in at short notice, and tested Parker for a few hours. The answer to the learning-difficulty question can no clearly be answered that it has nothing to do with vision. YAY! I needed that :) Deaf and Blind at this point, seemed a bit much (sorry for whining).

Expressive Language--This is what Parker says. He scored less than a 2 yr old here in June and at John Tracy Clinic in LA this summer. I could die. But my mom and John are saying, "Hey, we can handle 2 yr old speech!"..my response is LESS THAN TWO YEAR OLD SPEECH for a TALL FOUR YEAR OLD is harder to swallow.

Receptive Language--This is what Parker is understanding by way of language---ie. what he hears & interpolates. Also scored less than a 2 yr old...This is also not reassuring to me,a s you can imagine:)

Apparently, after a cochlear implant, every 6months a child should catch up one year's worth of speech. This has not yet happened for Parker. He's been implanted since May 2009, was technically only deaf since February 2009, but had to re-learn what he was hearing as well as deal with the vestibular areflexia, and hydrocephaly and epilepsy, yadayada, so who really knows at what time he was hearing at a level appropriate for speech and language development, and at what point his body and brain were ready to start "catching up"to his peers???

Bilingualism--We were throwing Parker in french and english school, ASL and LSF (french sign language), and expecting him to absorb all he could with the premise that typical hearing kids use more brainspace learning 2 languages at once. It has to be good for a compromised brain (ie, his little brain damaged-noggin) to learn as much as possible in as many ways as possible. We tried this until this school year-Spetember 2012. At the end of last school year, the deaf educators at CEOP decided Parker was too far behind in all aspects, and that we should give him a break. Let's give him one language this year & see if we can close the gap in comparison to his peers.

SO, today, I am finally doing my paperwork for September, catching up on bills and everything. I am filling out really important, really late school documents and I am repeatedly asked to answer the same question in a few different manners: "HOW HANDICAPPED ISSSSS PARKER???"

I suppose one would have to quantify that while determining if he qualified for school assistance, special materials, or special schools, etc. AND IT IS HONESTLY SHOCKING TO ME EVERY TIME AND IN EVERY PLACE THAT I READ THAT PARKER IS GREATER THAN OR EQUAL TO 80% HANDICAPPED.

WHAT?!?!?!?!

MYYYYY baby is super-dooper-extra-specially-over-the-top-almost completely-who-knows exactly-what-percent----special? NO, I mean, of course he is special. I know that. Just like you and I are special. We are all special, aren't we?? In God's eyes? When face-to-face to learning things in this things we call life? But how close is he to 100% HANDICAPPED???

I certainly think he is FAR from that.

Is he a mere 80%??

is he 90%???

Is he 98 or 99%? How on earth could he be? He's walking, no running? He is hearing? He sees. He can say some things. He has a hard time saying others.

He can't carry a conversation like his twin can.

Is he even thinking complex things like his twin is? Or is he just thinking "train"when he says, "I want train."???

Anyway, its been hard today face to face with his "carte d'invalidité" (His invalide card)...and filling out all these school papers.

And I think,  "Geez, how handicapped am I, if HE'S greater than or equal to 80%?????"

He certainly sees some things a heck-of-alot-clearer than I do. He has the big picture sometimes, and I am sure that I don't.

HOW HANDICAPPED ARE YOU???

The Sound of Silence

Is there a sound of silence?

I've strangely thought about this alot.

Is it too scientific?

Or too philosophical?

All I have to say is that I've concluded this:

IF YOU HAVE NEVER HEARD SOUND, THERE IS NO SOUND TO SILENCE.

BUT IF YOU ONCE HEARD SOUND, AND LOST IT, I BELIEVE THAT THAT SILENCE IS IN FACT, STRIKINGLY DEAFENING.

OK, I know there is WAYYYY too much to catch up on things that have happened in the past 3 months that it's hard to know where to start. This just makes me put it off longer.

Thus, the commentary on silence.

I'm wondering if silence increases our patience?

ISNT THAT WHAT THIS IS ALL ABOUT ANYWAY?????

"How poor are they that have not patience! What wound did ever heal but by degrees?"
--William Shakespeare

"If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm."
--Mahatma Gandhi

"He that can have patience can have what he will."
--Benjamin Franklin

"Patience is the companion of wisdom."
--Saint Augustine

"All we need is just a little patience.--"Axl Rose

Pediatric Neuropsychologists test for Delays, but who's delayed???

I just got off the phone with a secretary for a pediatric neuropsychologist in Los Angeles. I am trying to get Parker in to see her while we are in LA this summer going to the deaf camp for 3 weeks.


But I am reading the definitions of the testing I have just requested on my child --(thank you, Wikipedia)--KABC scale, Vineland scale, NEPSY….and don't know why I am at all surprised. They are testing his cognitive levels, requested by his french neurologist, but obviously testing for mental retardation and delay.

I just keep thinking he is still trying to catch up from being in that coma for 9 days...

But he's not. I mean, he is…but it is, in fact, more than that. Isn't it?

Dear God.

Is it?

Are you still there?

I know that you are.

I know that you are requiring me to be humble because I have not been. I am paying the price. I am sorry. Will I ever learn? Maybe not.

But I trust in you. And you take me by the hand and lead me to very scary places.

It's confusing for me. I thought you would take me only to warm, safe places. But this does not seem warm, or safe, or protected.

I've been scared before. But this is bone chilling. This is hard, cold, stuff.

Who scripted this?

Not me. That is for sure. And I guess no one else suffering their hard stuff scripted theirs either.


I have trusted You with my life, with his life, and you have guided me. I am just scared where you will guide me next. Still I take your hand cuz I have no choice. It's hard today. I'm just sayin.....

I cried for Aida today...

I havent cried for awhile. I began to think I had accepted my place in this story, That I had accepted Parker's place in his existence....but perhaps not just yet. I was so touched this morning by the fraternity I saw between the deaf kids in Parker's deaf school that I was taken back. My breath was taken away. Again. I am reminded by the sweat and blood, late hours, and hard work this school and its' professionals do for our baby (soon to be very big 4 yr old boy) and his comrades. Many deaf little precious kids in Paris. The school is preparing for it's end-of-year show. And Parker's class called "Jaune Soleil" (Yellow Suns) consists of 5 children: Aida, Laura, Yannis, Clement and Parker. They are planning to exposé how international their group is---Parker will be dressed as a cowboy, of course! He turned down the Statue of Liberty idea....I tried to explain to him that he would be dressed like a Cowboy, like WOODY (his favorite toy), but he was slow to catch the spirit of the project let's just say.... Aida has the most beautiful brown skin. Her mother is African or Antillian. Her father is French. She came to the group only this year. And all I remember of the first several times I saw her was that she was scared, and confused and crying. Today I spoke with her mom as she went into her individual speech therapy session and I went out. Her mother told me was she was doing well, and was much happier at the deaf school than she was at the hearing school (all of the kids do half time at deaf school, and half time at ordinary local neighborhood schools--I call them "hearing schools"). She told me she thought it was so confusing for her to lose her hearing at 15 months to meningitis. Oh! I nearly gasped. The dreaded word. But, I don't think my heart skipped a beat this time I heard it. But it did strike me with anguish. My soul was reopened after some pretty good scars have set in...Her too? Her parents, too? I was instantly softened by their sorrow and their story. Parker loves her. She is always smiling & fun. She's gorgeous--and so petite. Her brown doe eyes go right through me. And her sign for her name is done by having a closed hand by her eye, with the thumb extended, then turning it up and outward like eyelashes. It's appropriate. Great choice.Sometiems the name signs are pure inspiration. This one was right on! When Parker & I came out of speech, we also saw Clement's mom. Parker spent all of Sunday afternoon at their house for Clement's 4th birthday. He was so happy to see her, he couldn't take his eyes off her. Then Clement came down from his classroom. It was the first time I'd seen Parker exclaim while running towards him with open arms, "Meee-ment!"(It's how he says Clement). He gave him a huge hug as if it had been more than 55 minutes since they had last seen each other. Clement's mom had an intrauterine infection that they didn't even know about until Clement was born and found he had been infected, too. Soon after they realized he was deaf. Clement just had his 2nd implant surgery a few weeks ago. He signs like a champion--and I have no idea what he's saying when he solicits me. It breaks my heart. I can tell in his eyes he wants so badly to tell me, or explain something to me. He's got 2 hearing brothers. He's as french as they come. I have been closest to his mom from the beginning. She just had her 3rd son, went back to work and moved. She's amazingly organized, and on the Board for French deaf education. Laura is a bright, curly haired brunette of Portuguese/French origin. She also has eyes to die for. Every time I see her look at me, I can practically see the synapses in her brain hard at work. She's getting it. She gets the big picture. And she's talking up a storm. But she is "coquine" ( a little bit naughty!) as they say in french---when I arrived on scene at CEOP today the head therapist was discussing with her father why Laura acts up during her individual sessions. They were asking the question if it would be better if her parents did not actually attend with her, because she works SO GREAT when they are not around. Apparently yesterday she said, "Monkey"...and the deaf educator said, "No, Laura. Ce n'est pas un monkey, c'est un singe." She replied, "Maman dit monkey."..the teacher was suddenly confused thinking, perhaps, her mom, too was American, like Parker's....then quickly corrected her saying, "No, c'est pas Maman qui dit monkey. C'est Parker!" She had learned this word from Parker. Everyone laughed. They will be a deaf multilingual group! WHAT'S NOT TO LOVE ABOUT THAT?? Yannis is a 4 yr old Moroccan French boy with 2 other deaf siblings. Both of his parents are hearing. Today he mouthed and signed to me like I was just like everyone else (but I'm obviously much slower, especially with french signs). I honestly had NO IDEA again what he was trying to say to me. He does not have any implants. He wears hearing aids, but they don't help him much. He does fantastically well keeping up with the group and following what is going on, I am often amazed that he can't hear at all. I think he is scheduled to get 1 or 2 implants this summer. It will be a hard adjustment for him, but no doubt change his life--and his relationship with his classmates and his world. He's obsessed with CARS, just like Parker and Clement. Did I mention his eyes? They sear through my soul when he looks at me. Big and dark black. The french motto is: "Liberté-Egalité-Fraternité". Surprisingly I think about it a lot. It is not dissimilar to the way of American thinking. We just have differences in culture, right? Sometimes significant differences. But as I think of Liberty, Equality, and Fraternity today, I think of these little international deaf kids in a hearing world. I think that all they want is the liberty to be who they are, and to be accepted for that. They want to be treated just like everyone else, and they need brotherhood or sisterhood, comradery that they feel in their solidarity at their CEOP class rooms.Or in the hearing world, too. I am so thankful for CEOP. I cry. I am so grateful for these big fighting spirits that live inside these little bodies with dysfunctional ears. I love them. I love their eyes. I love their stories they sign to me, or even speak, but in my hearing or just way-too-foreign--way, I just can't always understand them. I love their parents for all of their suffering as well as their triumphs...past and future. I love their international theme.I love their cause. You would love them, too. And their eyes! Today I cry for Aida. But also for her future, her past, and her present difficulties. The good parts and the hard parts. I feel such an affinity for her and her comrades, sometimes its hurts. I hurt.

Going to the circus today!

I apologize for those who have been waiting for an update! Let me just post this cute picture of our kids at Spring Break in Mallorca. Man,I love that place. And tell you that I have ALOT to catch up on. I will post again soon, I promise. I've had a post brewing for some time now. Just been waiting for the right things to happen before I get to it. I am going to the circus with the twins today and 58 of their comrades from school. It's going to be an interestingly fatiguing day is my guess!

But I am so grateful for this opportunity! I know very well it could be otherwise.

A Letter to Dr Q---

Hello Dr Q!
I hope your week is going well. With May and all of the crazy holidays coming up, I fear that that, too, will be exhausting for you. Spain will be a much deserved getaway for your family. We are going to Mallorca for the April holidays, so we will not be far from you! I am looking forward to the sun, and quality family time.

Here is Parker's update:
He was a lot less "present"on the LP Tegretol, but also seemed a lot less tired during the day. The levels seemed to remain more constant, but he was a bit "spacey"--not sure if this was due to medication levels being too low, too high, or just from the changes, and his body trying to adjust to them. Also, an IMPORTANT POINT---he was sleeping through the nights while on the LP!! For the first time EVER. That was lovely for me, and the rest of the family :):):) (Too bad this lasted only 2 weeks...)

Currently, Parker has been on non LP Tegretol for nearly 2 weeks (three times/day). And he seems more "present" when he is not tired, but as soon as I give him his meds, he is tired 30-45 minutes later--similar to the liquid (but the liquid happened faster), where he HAS to take a nap, and cries and is unconsolable until he does.Then, when he does, he sleeps too long, and has a hard time getting up. Now he is waking in the night again sometime between 2- and 4 am and he is wide awake, ready to play or watch movies, or get into mischief, etc. This, is caused, I think, by the fact that he has already slept a lot during the day... in this case I give him his morning dose at 2 or 4 am, and he goes back to sleep an hour later…and ready to get up to start the days' work at a normal hour.

Just wondering what you think? The Tegretol seems to effect him a lot--not sure what weaning Micropakine might do for him? I will do blood dosage today or tomorrow--but the local lab takes awhile to get the results.

So, that is the latest scoop!

Big kisses for a Happy Easter to you, and your chicks!
Renee

Little Mr. Incredible

I have been feeling low for the past few days. I feel like my legs are heavy, my body malformed, my spirit tired. I feel like I have been sleeping "enough" and wake up still feeling drained.

It's yucky.

I feel like the sun is shining, and I am not happy.

I feel cloudy inside.

I feel like crying. But I don't.

I don't feel like smiling. But I do.

I want to run, but when I do, I feel sluggish.

I feel like muddy, strong hands are pulling on my trainers, trying to hold me back.

And yet I pray for more wisdom, and help in understanding, and don't yet feel peace.

I feel surrounded by suffering... Broken marriages, sick, even dying children, joblessness, money-lesness, the IRS...and neuro-treatments.

I expected Parker's new medicine routine to be difficult in my mind-but in my soul, I expected it to go smoothly.

At some point along this road I decided that worrying was not a useful emotion. I decided it was wasteful.

Wasted time & energy: two things that are precious to my livelihood, and that of my family's.

So I try & place burden at the Lord's feet. And walk away. Ever mindful it is there, and grateful that He takes it from my shoulders, eventually lightening my spirit.

Sometimes it is easy to do. Sometimes I think I do it (lay those troubles aside), and yet I still feel pain and sorrow and hurt.

I ache.
I ache for everyone's sorrow around me.
Sometimes I am all encompassed by it.
And I think I cannot go on.

And then I do.

I get up, make breakfast, get 6 people ready for the day, and continue onward.
I try to shine.
But I don't feel bright.

We all know there is a direct correlation between how I'm feeling and how Parker is doing.
"C'est normal."
They would say in french. It's normal.

I try not to let it effect me, but of course it does. It infiltrates my soul. But my soul interfaces, nurtures, and teaches a lot of little souls around me every day....so I continue to try-and shine through the darkness and despair.



And Parker's not doing so hot.

He is having a lot of absences. This would look like blank stares to outsiders. But it is happening multiple times per day. We were trying to wean him of his meds, since his last multiple EEGs have shown "normal", but he's put on 2 kilos in the past 6 months, and it recently became apparent that with that weight gain & us not adjusting his meds, obvious that he still needs them.

His neurologist (whom I adore and call Dr Q), consulted 2 different neurologists more specialized in pediatric epileptic seizures and treatments for advice last week.

We (they) have decided to put him on a longer lasting anti-epileptic med to see if he could achieve more continuous and consistent coverage. He has previously been taking a liquid dosage 3 times/day, and each time after he took this medicine, he needed to sleep. With this obvious side-effect, we wondered if he also had moments where the medicine was giving him little to no coverage as well.

So he started these new meds this week. I expected there to be an adjustment period.

But when they gave me pills for him (twice a day), I decided to do my own experiment--put a whole one, a halved one, and a crushed one in three separate bowls of water. And left them for 12 hours...To see how they changed over time. He is to take these twice per day, they are to last 12 hours in him, but he is supposed to swallow them whole, or halved.

Parker is three years old. I am not sure any of my other kids could understand at 3 not to chew a pill before swallowing, not to mention DO IT, but clearly Parker does not get what I am asking him to do.

I try & halve the pill, and fill his mouth with applesauce, yogurt or ice cream and see if he will accidentally swallow it without too much questioning, but each time I see him swallow, it is followed by tongue movements and a little orange pill rolling around his pearly whites. SO I start over. Until I see no more pill, and hope and assume it has gone it's way to where it should go.

We counted 5 times yesterday that he had seizures. It is not seizures that you would hear about or expect. It is just that he has a quick disconnect in his brain where he stops what he is doing, stares into space for a few seconds (never longer than 10) before he comes back again. My instinct is to touch him, call to him, wake him up. If we do this, he snaps out of it quicker.

So he started this new medical routine Sunday night. The good news is that he is actually sleeping all night long. This has to be a good thing. For his developing brain to get continuous sleep, but also for me, and the rest of the family, too. I haven't had continuous sleep since I was pregnant with the twins. I guess that's about 4 years now--and that's a long time.

But I've asked his teachers to watch him & let me know when/if he does these stare seizures at school, and am trying to keep track of them to see if they are related to fatigue, dehydration, hunger, or change in schedule.

At the deaf school on Tuesday, I was asked to stay all morning with the deaf educator and learned so much (it was amazing and adorable what these kids do), but Parker was obviously tired and yawning all morning. I left before lunch, and when he returned home about 5 pm I received a note from the school nurse stating that during lunch, his head just plopped down into his plate and he was "KO" as the french say (Knocked Out)... But he was arouseable, so it was not a real loss in consciousness. The nurse stayed by his side during lunch. He ate a lot, then took a 3 hour nap before they woke him for his next class.

This is disconcerting.
But not terrifying,
I convince myself.
Let's keep an eye on him.

Today at the bilingual school it is dress up day (I have no idea what for--"carnivale" they tell me, I say "ok"--1/2 way through Lent? and dress up my twins). Penelope is dressed as a Pink Princess (following traditional Hall custom) and Parker dressed as Dash, the Incredibles Boy(who runs fast!).

In French the Incredibles are called "Les Indestructibles"--and Parker's teacher saw him and laughed saying, "Le garçon indestructible!"

As I walked away smiling to myself, I said, "Let's hope so. I hope he is indestructible."

He is Little Mr. Incredible to me. Incredible.
And I love him so very much it hurts.

The Boy Who Lived

So it helps that the house is a construction zone.

And the kids are out of school.

And we're trying to keep 5 little ones (and a couple of big ones) fed and happy (without a kitchen).

But we breezed through the period of February 20th through 22nd without too many tears.

And life is good here.

I have hope.

I like the metaphor of the broken kitchen wall. It's taking longer to break down, and the electricity had to be rewired since it was so old and out of code. So this is delaying the wall finishing, which is delaying the floor, which is delaying the cabinets and the stove/oven is scheduled to arrive any day now. But it's good. I want it to take longer, as long as it's done right.

Our family feels as healthy as it was before February 20th, 2009.

John and I are working on projects together.

The girls are studying hard and progressing.

Parker is running.

And jumping.

He only just started jumping last week. It's adorable and hilarious.

Imagine jumping without the sensation of gravity...

That is what it feels like for Parker.

And he does it.

And it's way too cute.

He's like a giant baby.

I think he weighs 35 kilos. And I tow him around like a newborn.

Sometimes he demands it.

Sometimes I welcome it.

But this week I celebrate his life, our lives together.

And I have joy.

3 years ago today we didn't know if he would live.

If he did live, we didn't know if we would be able to participate in life, and to what extent.

But now you would meet him on the street and never know.

Never know his sorrow, and pain and suffering.

And his mom's....

And his sisters'....

And his Big Daddy's.

And everyone else whose lives he has touched or continues to touch.

He smiles constantly.

He runs and laughs and jumps.

He speaks.

Sure, he has a lot more speaking and hearing and learning to do, but he's progressing.

Just like the rest of us.

What more can we ask for?

If it's like the kitchen, I'd prefer he takes a little longer, and gets it right. Rather than hurry through it and not learn correctly.

He's come a long way, baby.

We've all come a long way.

And the journey was hard, but good.

We're still here, still ploughing forward. My dad taught me many great things.

And I remember him saying "What doesn't kill you makes you stronger."

It resonates in my soul, it is true. But I can't help but wonder, "If it almost kills you, does it make you even stronger? Or are you proven weaker for almost falling over the ledge before grasping up the dusty, rocky wall before someone takes your hand and helps you back up, or you find the strength to get up again yourself??"

This week he has learned to say, "I wanna walk." This is not code--this means, "I don't want to go in the stroller, Mom."

He also started saying, "I don't want to."...or "I want to." Sometimes it's hard to tell the difference.

We're not sure where he learned that, since no one around here says, "I don't want to."

But it's good. I'm glad he's moved on from , "I want nandy!"

That was starting to get old!

The neurologist says Parker does not run. (But it's fast forward motion, come on.) I think these videos prove otherwise.

Run, Parker. Run!

And don't look back.

Just look out for cars...., please.

Break Down to Build Up

Of course my mind has been turned toward difficult Februarys past as we approach the ski vacations this year. We are coming upon 3 years since PJ got his wicked illness and as everyone around us prepares to leave town, pack their ski clothes, try & stay warm in this Paris Winter weather, I am happily staying strong and staying put.

We had a busy Christmas, so it's been nice to regroup and take it easy this Paris Winter. Since January I feel a physical burden has been lifted from my shoulders. It could be that the twins are getting bigger and easier. It could be Michelle, our new fille au pair! It could be that we are not running ragged with doctors appointments (as we have in Winters past), it could be that we are focusing on different things since our family seems to be healing or mostly healed since FEBRUARY 2009...or a myriad of other things that I am too myopic to see.

The past 2 years in February I have been depressed.....

And I am not a depressed person.

I try & talk myself out of it, but anyone who knows depression knows it's a hard thing to do.

Luckily I have lots of spring chickens and dear friends who force me out of seclusion.

But this Paris Winter has been unusually bright.

The weather has been very mild until recently, and we've had "un grand froid" as the Parisians call it. A very bitter cold that has settled in, but it has been less-less very-much less gray. And-

Oh-how-I-love-it.

But I think it's not only the weather that makes things seem brighter.

It's everything.

My family seems happy & healthy.

My husband is working hard. I am working hard.

We feel grateful for our health, though sad for my Dad's recent heart attack...and other notable hardships around us.

But we are concentrating on times tables, and brushing our teeth better, learning poems, colors, shapes, verb conjugations, piano pieces...ballet positions.

It's finally a house of learning & love & growth.

After we have suffered to stay afloat for 3 years.

And its glorious!

Sure, there are mountains of laundry to fold every-single-week.

And cupboards to organize everywhere I turn.

But it seems like it's just the way it should be in a working household.

John was away this week on business, and he told me," It feels like I haven't been on the road for a long while and I miss you all a lot more. Feels like the girls are getting big and growing up and we are never going to get them back..."

I LOVE it when he gets all sentimental like that.

But its true, that I have moments, and moreso recently where... I want to freeze time & just soak in the moments. The moments when Parker throws everything like a ball, falls on the floor in his crazy roll-dance...and the girls laugh and prance in their fancy dresses & newly done big-sister-produced pedicures & manicures.... When we have secret love notes under our pillows, and child-choreographed plays to watch and applaud...when we eat more candy than we every should, and go back for more.

Parker has recently discovered the word, sign, and concept of candy. He has been able to say chocolate for some time, but now it's like a crazy obsession that he asks for candy a hundred times per day. AND HOW CAN I REFUSE A DEAF BOY WHO SPEAKS AND SAYS " I WANT NANDY!"?!?!?!

It's so impossible to say no to him.

But when Axelle exclaims, "Oh! I loooooove that!" about EVERYTHING---after crying for fear not wanting to do anything beforehand...or Penelope bosses me around looking for her favorite pony or hair bow or this skirt or that mermaid....when Hannah looks me in the eye and I can see forever that she has always existed to be my child...when Abby carefully reads to or gently caresses the back of a sibling as they drift away to sleep... or uses her older, sophisticated 10 yr old knowledge to reassure a crying sibling who forgot her poem at school to just "google it"...my life seems perfect.

And I want to capture it. And fold it up delicately decorated in heart shaped paper with bright stripes & spots and doilies..and keep it carefully tucked away in my heart to open again later.

When they are grown and gone.

When I won't spend ALL DAY EVERY SINGLE DAY PICKING UP CLOTHES AND TOYS AND SHOPPING FOR AND PREPARING MEALS.

And I will miss it. I will miss them. I already do in anticipation......:)

My life is bright. Full of so much joy.

I thank God for that.

My dear, loving God.

But as we approach the Winter Vacations, I am happy to take down that awful bright green that I painted the entryway last Paris Winter or the Winter before (?) to try & feel happier & lighter, and trade it in for something different.

And we are tearing down walls, and fixing up our kitchen, changing kids rooms and reorganizing.

And it feels really, really good.

It's hard work and takes a lot of planning & budgeting, but it's going to be so bright & clean & new & fresh when we are all done.

It feels great to concentrate on worldly things that don't matter much, but that will impact us on a daily basis. That will make our home a refuge for the storm outside that is life.
We have needed this work for a loooooong time. It is overdue.

And I can't help but make this obvious parallel between us and all that we've been through....

That we are tearing down walls to better our home....and that perhaps we needed to be broken down ourselves in order to be bettered--in a spiritual way, or emotional way, or just to better understand humanity. And why we are here.

We have to break down to build up. To make stronger.

And man, were we ever broken down, and humbled.

But we are building up again. And hopefully stronger and righter and truer--to ourselves, to those around us, to our Maker. To life.

Soooooo bring down the walls. It starts tomorrow!

My Son's Future Arrived in the Mail Today

Parker's new cochlear implant arrived in the mail this morning at 9:12. Luckily I was just returning from dropping the 5 lil ones at their respective learning locations and was folding up my massive double stroller outside our apartment when I saw him spritely arrive....

THE UPS GUY.

I wanted to hug him!

And he had the most gentle, crystal blue eyes.

I didn't of course.

Maybe if we were in the States I could do that. Or not, actually, maybe he'd sue me if I did that in the States... But in any rate, I restrained myself.

This, after already getting lots of strange smirks to-ing and from-ming from school with my hair in plaits. About 8 I think. Grown women are not meant to wear braids in public, ya know. At least not in Paris. ESPECIALLY not in Paris. And all my chic neighborhood parental comrades were dropping off their equally chic offspring at their chic parisian schools as we marched our own ways... And most couldn't help but stare and smile at my braids and bright yellow stroller, and my multiple offspring (come on, you have to admit, 5 is REALLY not all that many...)in tow. So I was feeling especially unique (why?), and a little bit fun this morning. It's amazing that I was here when he came. I am not always that efficient in my timing of things. As those who know me well will attest to, hands down. (My name in french sign language means "LATE"--its kinda rude, right? But was given to me by my classmates in LSF class. I have to admit, it's a propos.)

So anyway, this is NOT AT ALL ABOUT ME.

IT'S ABOUT THE BOX. IT'S ABOUT THE PACKAGE. IT'S ABOUT WHAT'S INSIDE THE BOX.

I can't help but think of John trying to teach me what a "function" was in Calculus in college. He said repeatedly, "A function is like a box. You have something and you put it in the box. When it comes out of the box, it's actually something different. It's changed." Honestly I did not get it at all. Somehow I got a B+ in that calculus class (thank goodness for take-home exams and group finals!). But I think I might get it now.

What went into this box is a lot of plastic and design, hours and years of research,and trial and error---lots of accessories, cords and even some fancy, flesh-colored magnets and a very special minuscule computer that is totally blank.

What will come out of this box later today is the same thing. But we will quickly connect it to the ORL computer at Necker and give Parker some new programs.

What will come out of this box is my son's hearing.

My deaf son's hearing.

It's magic, right?

It's no doubt the BEST thing we'll get in the mail ALL YEAR!

This box is unbelievably noteworthy. This box has my son's future inside of it.

It might as well be covered in sparkles and fairy dust. Maybe I will put some sparkles on it and show the girls at lunchtime.




And I should quote someone who has a cochlear implant--a man named Michael Chorost, who went totally deaf in a matter of hours at the age of 36, then wrote a book titled Rebuilt: How Becoming Part Computer Made me More Human---(beware, it's very technical!)

"The cochlea has three mechanisms for converting sound into nerve impulses, called rate coding, place coding and phase coding. Place coding happens to be the easiest to replicate with a string of implanted electrodes, because from a place coding perspective, the cochlea resembles a piano keyboard in a spiral. Hair cells at the base of the cochlea resonate to high frequencies; ones at the apex, to low frequencies. The electrode array can therefore simulate the place coding mechanism by firing electrodes in the appropriate places. High frequencies are transmitted by firing electrodes at the base of the cochlea; low frequencies, by firing electrodes at the apex. The other two mechanisms, rate coding and phase coding , are so much more difficult to replicate electrically that the engineers have focused on place coding. But is replicating only one of the ear's mechanisms enough to do the job? The brain is so flexible- so eager to deal with whatever information it gets-that the answer, more or less, is yes. So the electrode array plays the cochlea like a piano. That is, a very small and very complex piano. Most sounds consist of a jumble of frequencies. A normal cochlea uses physical mechanisms to separate out the frequencies the way a coin sorter rattles coins into piles. A cochlear implant, however, has to do the task with binary logic, digitally taking sound apart and figuring out which electrodes to fire on the array in every passing millisecond. The software that manages this process is one of THE monumental achievements of bionics."

But imagine what this means if your new software is different, or "upgraded" from your older software. I just wonder if your brain is forced to adapt and work harder every time you get an update. And exactly how hard it is to "upgrade" your brain.....to adapt to newly upgraded software?!



Every now and then you have these big moments in your life....

MOMENTS where you are trembling with excitement and anticipation and hope and dreams for the future.

For me, I can say I've had a handful of moments like this:

1-The first I can think of are college acceptance letters, where your future is hanging on those letters, or more likely, the size of those letters (big envelopes=acceptance, small envelopes=refused)...next:

2-when my husband proposed to me.... and I could hardly believe my ears. I wanted to soak in every single thing about that moment--his words, his lips when he said it, remember his perfectly-gelled missionary hair cut, the table cloth and beautiful dishes at the table we were sitting at, the images of the view behind him and around us, knowing that his words and my response would indefinitely change our future....or

3-EVERY. SINGLE. TIME I pushed out a little one from the safety of my tummy into the coldness of this world, to see if it was a BOY or a GIRL.(count em, F-I-V-E)....or

4-Waiting in the dirty, old reception of the ORL department at Necker just hours after my son woke up from his coma to do a hearing exam that I did not completely understand the ramifications of... Waiting for his destiny to unfold in that doctor's office...Listening to her nervous twitch and watching her swish her hair as she told us....and we squeezed our hands together, John and I, with our jaws open, and gaping, that our sweet baby son who just woke up from 9 days of coma, and shock and seizures...and worry that he wouldn't survive..., was now bilaterally, profoundly and permanently D-E-A-F.

It's these moments in our lives that define us. How we respond to these moments and where they take us that make us who we are.

For good, or for bad.

That's where I am this morning. Shuddering with anticipation. Grateful for these researchers and scientists and programmers and miracle-workers who restore some-kind-of-hearing to my little-once-perfect-son's cochlea.

Cochlear is the name of the company. I shake with emotion and fear and trembling and hope and wonder as to how Parker's internal computer implanted in his cochlea and his brain and his little magnet on his skull above his right ear with his thick, rustled strawberry blonde locks will receive this new device, these new programs.

How they will change his life.

His future.

And ours.

Now, I'm gonna go find those sparkles.

New Year, New Goals

It's a wonderful time of the year to regroup & reorganize. As we were sitting in church on SATURDAY (the Jewish Sabbath) in Mt Scopus, in a chapel overlooking the old city of Jerusalem a few days ago, the speaker, a musician, talked of cadences. And how in music they are very important. How the pause is just as important as each note. It rung home to me that these pauses in life are when we receive inspiration, when we meditate, when we commune with who we are within ourselves and where we lie in the universe. And this is where we find God. This is where He sits, and waits for us. He waits for us to consult Him. He waits for us there to funnel us inspiration and revelation.

I realize I need to go there more. I need to receive more.

It's hard enough to make goals for yourself, but as a mother of 5, I want to make goals for each child today, too. And for our family, our marriage. It reminds me of that life-coach quote (or was it the Cheshire cat in Alice in Wonderland?), "If you don't know where you are going, any road will take you there."

I want to go places, so I need to plan how to get there, I guess.

I hope you, too, take the time to reflect in this cadence before the hustle and bustle of life takes over again, count your blessings, give thanks, regroup, reorganize, and be more efficient in the things you hope to get out of life, and accomplish from life. Not only think of your objectives, but think of your outcomes. And get there.

Parker had 2 major hiccups on our trip to the Holy Land with our brood and both sets of grandparents this past week: On the mountain of Petra in the Hashemite Kingdom of Jordan, he took a pretty bad fall, on his face and head. This, just after a lot of reflection on how often he falls, and if he genuinely needs someone to accompany him in a classroom setting (the deaf camp we are applying for asked us just before Christmas). I honestly over-estimate how healthy he is, I underestimate how "handicapped"he is. Maybe it's my positive visualization, maybe I am in denial. Maybe I know that someday SOMEDAY he will be all that God and I want him to be, so I imagine he is already there. But when he is tired, his balance is really effected, and he was hot, and tired, and on very rocky terrain, chasing some adorable puppies. But fell on his head, and scraped his face up preeeettty good. He immediately fell asleep, and it was the first time in a long time I thought he might have a seizure. HE DID NOT. But he went to sleep immediately in our arms, and I was worried about a concussion. Nope. Just needed a good nap after being dragged up a mountain on a mule, and before riding back on a camel. Thank you, dear God.

Next hiccup occurred at 4 am 2 nights later. We had returned to Jerusalem to attend church, and see the Sea of Galilee, the Jordan River, and Capernum, and Cisearea before our flight brought us home. And we were awakened by the hotel security at our wide open door asking if our son with a "messed up" face was missing? Parker woke up at 4 am or so and decided to take a stroll unattended in the hotel. He was found on another wing of the hotel, crying outside a very nice couple's room, who got dressed, and took him to the reception. I asked the security how she knew it was us, and she said she just walked around until she found a room with the door wide open. Sigh. I was grateful he did not decide to climb any dangerous walls or that we were not located on a busy street and he went wandering into the desert or looking for trouble outside of the hotel.

My mother-in-law said to me, "Were you just sick with worry?" And though, yes, I was full of lots of emotions, and reeling for a good hour after we returned to our room, and he repeatedly asked for chocolate, worry was not one of those emotions. I told her, "I've used up all my worry on Parker. At some point I realized that worry is a wasted energy. That it is better to save that energy for other emotions, to assess each situation more level-headed and do what I can." That "I realized long ago that I am not the Master of this universe. It is God. I try & ebb & flow with Parker and his future and destiny."

That being said, I think that we control a lot of our destiny, that we can influence where we end up with the choices that we make. I also firmly believe in the power of prayer. I know that it works. I know that God hears and answers my prayers. So I will make new goals to be set anew for each member of our family today, then pray for help in accomplishing these goals.


Parker's goals for 2012:
(This is my short list for Parker. His own goals would involve anything to do with outside, doggies, cats, balls, chocolate and ice cream)

Run and not be weary
Walk and not faint
Listen and hear and understand
Speak more than 2 syllables at once
Ask questions--not only one word requests
Taper epileptic meds
Increase attention span
Recognize and realize implications of danger
Wear Big Boy Pants (I am afraid this is far, far off)
Get accepted to Deaf Camp in Los Angeles this summer

We wish you all a wonderful holiday season. I hope you all felt the Spirit of Christ and celebrated His birth during this Christmas time. We were very blessed to have John baptize Hannah in Versailles this holiday break, and are so pleased with her choice to follow Him and His teachings. She was so pleased to have both of her Grandpas speak at her baptism, both of her Grandmas pray, and the rest of us sing a special musical family number in sign language with our fantastic nanny, Amber, who has returned to the US. We took an amazingly memorable trip to the Holy Land with those we love nearest and dearest. It was exceptional to walk where Jesus walked with our little ones and blessed parents hand-in-hand. We feel very loved and thank the Lord for our many, many blessings. We wish you all goodness and health and prosperity in 2012.

And enough time and wisdom to stop, and listen to the rests, too, as you listen to the music of this great life.