The next baby

Parker had a rough night last night.  He was vomiting most of the night, at first the Costco hotdogs we had procured on our shopping trip to the UK revisited us and then when he had nothing left his little body was dry heaving. While it sounds a bit dramatic, we think it is just a bout with the stomach flu “gastro” which his sister Axelle had earlier the same day. By the end of the day he was running about with his sisters and asking for more hotdogs.

Otherwise, clinically he seems to be doing great.  The second implant is a bit more than a year old now and he is doing really well with it.  Still not clear if it adds a lot to his understanding or comprehension but it is reassuring for us that his entire hearing world is not dependent on a single device.  His first implant also got an upgrade so both of them look alike.  We can’t tell which is which until we place them activated on his head and he either says “it’s good” or “switch”. 

He is a chatty little boy, not always making much sense but always verbalizing something.  When he plays with his toys they are always verbally animated with appropriate battle sounds or crashing sounds.  When his hearing is off and he is technically 100% deaf he continues to be verbal just louder. Renee has taken to enhancing his vocabulary of positive affirmations so he also throws out an enthusiastic “You’re the best” or “Awesome” or “This is amazing” when someone does something nice for him.  He gets confused sometimes with similar sounding words as the other day Renee asked him to get his vest and he quizzically replied “You’re the best?” He also has taken to calling everything "super" but has a slight Boston accent which comes out as "Supa".

His cognitive level still is unclear although it is clear that he misses a lot.  He is behind his age group (significantly so when compared to his twin sister).   His school situation is a bit complicated after the Rainbow School closed their special needs program leaving us with few alternatives.  His dedicated teachers, Jill and Michelle, were looking to set up their own structure and we somewhat committed to following them without knowing what was going to happen.  They haven’t got a physical school set up so in the interim Michelle works with him from our house for four hours a day four days a week.  At first we were a bit concerned but so far it has been very good and not driving back and forth to La Garenne Colombes twice a day has been an added bonus.

I don’t really see any evidence of seizures or absences and the medication has been toned down a bit which I think has helped him be more alert.  It still makes him drowsy but less so than before.  He is still a champion medicine taker and rarely complains.

Today is the last day of a two week school break and we have enjoyed the downtime and not venturing far from home.   As we prepare mentally for the winter months in Paris which, if all goes to plan, will culminate in the arrival of a new baby, we are trying to focus on preparing ourselves and our kids for the this next phase of our family.  It has been more than eight years since we did this and while many things will be different, a lot has changed for us as well.  When the twins were born, our eldest, Abby was four months short of her 7^th birthday.  This time all 5 children will be over 8 years old and we will have two very capable built-in teenage babysitters.

Two questions that people always seem to ask are “do you know what you’re having?” and “what gender to you want it to be?” To the first question the answer is and always has been "no" and the second has always been “whatever God gives us”. 

This time the answer to the second question is different for me.  I want a girl.

While I try and convince myself that girls are easier or that we are better at girls, etc. the real reason is that I am terrified of having a boy who is… not Parker.  I am scared of having a boy who is not super excited about everything that there is in life.  A boy who is impossible to go on a walk with because he stops every ten steps to twirl around a post or crouch down into a runner’s position on a dirty Parisian sidewalk claiming “I’m the Flash” before  sprinting ahead until he feels that he needs to crouch down again 50 feet later.  Imagining a boy who doesn’t ask 100 times a day “where’s dad” or who doesn’t rush to the front door yelling “you’re home” every time I come in. A boy who doesn’t want to go with absolutely everywhere and or doesn’t rush to put on his shoes, often on the wrong feet and sometimes neglecting to put on pants so that he can accompany me while pleading “can I go with us?” A boy who doesn’t burst with excitement at the prospect of going to Disneyland and asks repeatedly “where are we going” greeting each response with a gasp of unabridged joy. One who doesn’t break out into spontaneous dance moves including frequent somersaults on concrete every time he hears live music. 

I am equally saddened by the thought of having a boy who is not isolated by a disability. A boy who gets invited to birthday parties and over for play dates. A boy who listens and understands everything I say.  A boy who goes to a school with classmates, homework and structured objectives. A boy where I project my own plans and expectations on for a well-structured future filled with service, school, marriage and career.  A boy where I am not content to accept every day as a blessing and every progress made as a miracle. 

I hope that I will be able to adapt to whatever happens, but while Parker may not be a perfect boy, he is the perfect boy for me.

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.