Hydrocephaly, CT Scans, and Christmas!

November has come to mean EEGs and December has come to mean brain scans.

I used to think that Parker's hydrocephaly was the least of our worries. And admittedly, it is not at the top of my list. But I sort of just thought it was the most black and white of all of his problems. Sort of like a broken bone. It's broken, needs to be re-set and then it's pretty much good after that. Until it malfunctions or gets infected or something. Then we'd have to deal with it at that point...but in the end, this may not actually be the case.

So off we went to Necker to get his annual CT cerebral scan yesterday & visit with his beloved neurosurgeon. It's frankly bizarre how much impact she and her team have had on my son's life and our family, whereas for her, its " just another day at the office". I ran into one of the neuro-surgical doctors in the stairwell while exiting, and I was happy to see him & report of Parker's progress. And honestly, he couldn't pick us out of a crowd at Disney, not to mention Necker. It's fine, but still, weird. Imagine how many other babies he has operated on in the past 2 1/2 years since PJ. And I think it's great that we just blend into the crowd--that means its not marked in his memory as being something extraordinarily horrific or difficult. Just standard care post-meningitis. Right? But still, again, bizarre.

But every. single. time. I go to Necker's radiology department, I can't escape there without being ripped wide open with sorrow and emotions that last. It takes me a few days to recover. I slow down, my heart breaks. I just keep seeing images of moms & dads in tears, holding babies with abnormalities, and children in comas doing emergency procedures. A little girl about 6 years old was brought in for an emergency scan on a ventilator, and I walked by her repeatedly, her parents, and accompanying doctor and nurse in masks before me & Peej were sent back to the waiting room awaiting our results. I could feel the stress of all of the secretaries, techs, nurses, doctors for the next hour while they awaited those results for that little girl and her family. And we awaited the results of Parker's routine brain scan. And I think how on earth those people work there is amazing. And they are all angels helping these little children. I am so grateful for them, and pray the Lord will bless them in their service. And bless those they come in contact with hour after hour-day and night-day after day after day.

Lucky for us, we actually get to leave there. For the space of a year, before doing it again. And yet seeing those emotional and worried parents takes me right back to the time we rolled Parker with his increased intracranial pressure in his iron crib with peeling paint through the basement of Necker to get to his scan on a portable ventilator. And every time we met a crack on the floor, we lifted his crib ever so gently amongst the dust and pipes of the basement, and continued onward. And there was silence in that long dark, dirty hallway, except for the loud beating of my heart in my throat, and my uneven breathing- and the continued beep, beep, beeping of Parker's portable ventilator....

And each time Parker does his scan, I am honestly surprised that he still has hydrocephaly. Physically as well as Spiritually. I clearly do not understand the body and how it works. Nor the Lord and His mysteries, and creations. I expect all of the water (or cerebral spinal fluid) in his brain to have re-absorbed by now. And can't figure out why he still has it if he has a drain in there to drain it...does he need a bigger valve to drain it? Isn't it immediate drainage? Like a funnel? Is his brain actually happy with this amount of fluid in the 2 ventricles and frontal lobes (more on the right side?), and THAT is why it retains it? ....and why when I pray for it to be gone, does it still linger? Do I need more faith?

I have learned some time ago not to ask the question WHY? It is inutile, but still, it creeps up from time to time into my consciousness.

I know I have enough faith for him to be healed of hydrocephaly. But do I have enough faith to understand why it is not yet gone? Is this all just part of God's plan for Peej--and do I just need to accept that, or fight for him to get better, be different, be better than he already is....? I feel that it's a fine line between acceptance and indifference. OF COURSE I am not indifferent, but to quietly accept God's will sometimes borders on defeat for me. And I am not easily defeated. I do not want to be defeated.

And if he still has it---(WHICH HE DOES), what are the long term effects on his growth & development & learning? Are the problems he is having now in deaf school related to that right frontal lobe pocket of liquid ? Or just hydrocephaly in his ventricles? Or does he just still need some time to catch up from those missed months of illness? They are asking if we've done a vision/neuro test on him to see if the portion of his brain that controls vision is in fact damaged...if he has a hard time seeing objects on a piece of paper, and in 3-D for example, and realizing that they represent the same thing. And how could it be that my gorgeous niece (also with hydrocephaly and a shunt that has not functioned for 3 years) is not having changes of consciousness, nausea, vomiting, coma, difficulties learning, or even worse, death? These are the risk factors associated with hydrocephaly....does she really need a shunt afterall? And since she is clearly old enough to remember another surgery (unlike Parker who I think will thankfully not remember any of these surgeries), is it worth all of her suffering and pain? Will it better her life? And can we all just function fine with some amount of hydrocephaly, as long as its not putting pressure on our brains?

Those are my questions today.

But here is the official scoop:

1-Dr. P told me yesterday that she didn't even need to look at the scan after seeing how Parker walked, talked, and interacted with us. She said he was fantastic. (I already knew that but its nice to hear to from a neurosurgeon from time to time)

2- She also told me the longer we got away from the surgery (now its 2 1/2 yrs), the less likely it is he will need a repair--ie. it gets kinked or something because he was so small when it was placed and now he is getting bigger and his brain is getting bigger, etc, that he'd need an emergency repair neurosurgery to fix it up again. No biggie. Still could happen, 50% chance. OK.

3-She said we'd do another scan in one year, then if it's good, start to space it out to every 2 years, etc.

4-She concurred with our neurologist who wants to start taking him off anti-epileptic drugs. She said usually after a patient has 2 consecutive normal EEG's, it is acceptable protocol to start weaning them & see how they do.

5-She wanted to see him run. And she did.

6-The scan still showed to me significant water space in both ventricles as well as both frontal lobes, more in the right lobe. But the good news is that the shunt is still in place. And still working.

7-For her, the scan showed a slight decrease in liquid when compared to last year's, and the best part is the brain does not seem to be suffering from the fluid--that the curvatures are still there, symbolizing there is not an inappropriate amount of pressure anywhere.

So, in essence, it's good. Upward and onward we go.

And thank the Lord for our blessings.

And we think of Christ at this time of year, and the Plan of Salvation and being with our beloved family & extended family enjoying them and our common values and love and strength we get from them, the teachings they have taught us and continue to to teach us.

And we recuperate from our many holiday parties, Hannah's baptism, losing our fantastic nanny (We miss you, Amber!), and prepare for Christmas Eve and Christmas.

And prepare for our surprise trip for our children and both sets of grandparents. We leave the 25th and return the 1st.

Life is good. We are oh-so-grateful.

God bless you all and keep you. And many continued thanks for your prayers--present and past for Parker, and anyone else who suffers. I know they are not in vain. I know that God hears and answers prayers. Sometimes it is not immediate, and it is not always the way we expect, but I know that He does. And I trust in Him.

Merry Christmas to all, and all of God's blessings for the year to come! Bring on 2012!

Encore and Again

Ok, you can correct my french if you want, but here's the first two emails I wrote this morning before we headed out and headed up some festive parties today!


Bonjour Dr C & Dr L!
>
> Ca y est! L'implante de pret est arrivée ce matin! 48 heures sans audition semblait trop longue pour nous tous! Parker etait vraiment content quand il est arrivée, et commençais a parler toute de suite apres on a mis, avec une grande sourire! On a commençais avec programme 1... Apres quelques minutes, j'ai tenté programme 2, et il disais, "encore?"..donc j ' ai fait programme 3, et il disais "encore, yah?"...C'etait top!
>
> Merci infiniment pour ce beau cadeau. C'est vraiment une benediction pour notre famille!
> Bonne journee et bon weekend!
>
> Renee HALL et famille



Hi all!
I just wanted to let you know that we received the replacement implant for Parker this morning in the mail! 48 hours without audition was waaaayyyy too long for all of us! He started talking immediately after we put it on. We started on a low program since he hadn't heard anything for 2 whole days. After a few minutes, I couldn't help myself but try & turn it up. He smiled and said, "again?", so I turned it up again. He repeatedly  said, "again?"...until we had it on the highest setting. I am so thankful for this gift of science & technology. And thankful for all of your good thoughts & prayers for us during the past 2 days! I was very doubtful we'd actually receive the implant this morning, and would have to wait until Cochlear was open Monday morning to even speak to someone. Parker was visibly disturbed yesterday, had a difficult time going to sleep last night & always searching for something to watch on the TV/computer or something to destroy. Let's hope today he's better and we have no more run-ins with the toilet!
Kisses to all, and have a great weekend!
Renee and gang

You don't realize he is deaf, until he is....

This morning we put on Parker's implant quickly so he could more completely enjoy his advent chocolate with the sisters before school started. Then we hurriedly prepared for school.

When is was time to put coats & shoes on, I realized he wasn't listening. And he wasn't talking. He had lost his implant somewhere.

I bribed all of the girls to get a special treat if they found it before school started. I signed to Parker "Where is your implant?"and he actually took me by the hand & led me somewhere. I was encouraged, then let down, when we didn't find anything.

So I freaked out and took him to school. I asked the teacher if she still wanted to take him, even though he was deaf. She said, "Of course. I will call you if we have any major problems".

She never called.

I spent the entire day looking for his implant. I looked in rubbish bins, toy boxes, with the Barbies, with the balls, in the dirty clothes pile. I pulled out all the cushions on the couches with no luck.

At lunch I bribed the girls again to look for it. No one found it.

Given his past history of throwing electronic things in the toilet:
1-my iPhone 3 (still haven't got a new one) in June
2-the remote control for the TV ( a few separate times, actually)
3-a battery for his implant (last week--these cost 139Euros btw, and he flushed that one)

I am not actually holding my breath.

When I was in the shower this morning, Hannah came into the bathroom, asking if I knew if Parker had something in his hand. I responded that I didn't know, and "Why?". She said he was playing in the toilet. When I got out, Abby told me there was no way she was sticking her hand in there to check things out. I told her I would. And yet, when I arrived in the other bathroom, Parker, Penelope, and Hannah were standing around the toilet. I could see there was a lot of paper and such in it. As soon as I entered, I heard another flush.

Usually I have a feeling that we will find whatever it is that is missing. Today I didn't have that feeling....and yet I continued to search. I was not totally convinced that it did go to the sewers of Paris, but I wasn't completely convinced that it didn't either.

I am doing better than expected with him deaf though.

I've filed all the papers with the insurance company (the CI cost 6000E to replace),and called his deaf school and the Dr at Necker for advice, then Cochlear, the manufacturer, to get a "loaner"one that we get for one month. If we don't find the old implant in that time frame, the insurance company is supposed to get us a new model. I asked if I could buy some new batteries to replace the 2 we recently lost (one today & one a few weeks' back in the toilet, remember?), and the woman actually told me I should wait to see if the other turns up. If it does not, we will be the proud owners of a newer and better version of a cochlear implant made by Cochlear since his current model is actually almost 3 years old.

That's sort of exciting, but means all of our accessories become obsolete.

So as the day progressed, I realized more fully how useful this machine is to us-----and our little man.

I asked the kids to get on their coats & shoes several times today. Parker just stayed & played wherever he was.
I don't dare let him walk on the side walk for fear he will run into the street and not hear me when I tell him to stop.
Mealtimes there is a lot less singing & fun. In general there is significantly less chatter and laughter in the house. When it is time to do anything or go anywhere, you actually have to find Parker, tap him on the shoulder and motion him to come with you.

I found myself signing to him in silence today. And I felt that we had much more onlookers than usual. I guess I usually speak and sign, or just speak, and people don't notice him as being that much different. But just signing, it actually drew more attention. But I have evolved to be one of those "signers"that doesn't speak if the speech is falling on deaf ears. Not sure why, since he could be reading lips, but its almost as if it's wasted energy in my mind.

He is a lot more isolated. He wanted me to read books tonight to him in bed. It was hard. I tried to sign the stories that we read a lot, with the cadence that I usually use in my voice. Each time we got half way through a book, he closed it and put it down. It's just not as fun to be deaf. It's just not nice to listen to stories when you can't actually hear anything.

And I tried to imagine how much harder it would have been these past few years without him hearing. How much more energy it would require--emotional and physical to get his attention AND TO TEACH HIM THINGS.

And yet I couldn't help but wonder if in his mind, he hears things, when he is deaf. If when we were singing anything today with gestures, if he thought of the melodies in his mind, or if it just turns off a bit when he can't hear. Because it is so obvious when he is not "connected" that he vocalizes a lot less. He becomes nearly mute.

And I wondered about the sound of silence. If there is such a thing...

I recently had two older women tell me that they developed hearing difficulties at an older age, and they both hear very unsettling noises in their heads now. That one woman actually feels her head being pulled to one side, the side with the deaf ear. The other told me she hears constant ringing. That is bothered her for a few years, but now she learns to tune it out. Sometimes she is successful, sometimes she is not.

It's unsettling, right? While at the same time, so very reassuring that we are doing the "right" thing for our son. He clearly enjoys hearing. We clearly prefer speaking to signing. I can't imagine him in a quiet world. I can't imagine myself in a quiet world. I can't wait until our new processor & accessories arrive. Until Saturday morning, Parker will be in the non-hearing world. 48 hours is 48 hours longer than I'd like for it to be.

But it's occasions like this that teach me the importance of us learning to sign to him, so that he understands when things like this happen, and that we can actually communicate with each other. If one day he chooses to be in the deaf world, we need to provide those teachings to him.

The speech therapist for the girls wanted to see Penelope with Parker this week. I think she wanted to hear his voice to see if they were perhaps mimicking a deaf, hollow voice. When she heard him speak, she was stupefied. She said his voice was utterly beautiful. And it is.

So you don't really realize he is deaf, he just seems to be wearing a lot of headgear, until he actually is deaf. Like today. And if you run into us, tomorrow as well.

We are adapting better. A few months back, I would have been banging on the doors of the hospital insisting that they give us a replacement CI in the interim. And would have been fighting back tears all day long.

And it's true that I was much more pensive today, and disheartened, and reflective of where we've been and where we are going. But I could tolerate it. And so could Parker.

I often get the question, "So can he hear AT ALL?" My answer to that question is a resounding "YES! WITH THE COCHLEAR IMPLANT. IT'S MAGIC". But the truth of the matter is that without it he is basically completely deaf. Let's call it bilaterally profoundly sensorineurally deaf.

Just to give it a name.

November means wassail, pumpkin cookies, autumn leaves and EEGs

Summer means swimming & playing all day in the sun, watching sunsets together, reading by the poolside, reconnecting with and rediscovering my children, lots of painting & times tables.

September means new school clothes and lots of kisses on greeting long lost friends, anxiety about new teachers & schedules, and cooler weather.

October means lots of birthday parties, long play dates in the park, getting our feet (and shoes! after going barefoot) under us, and settling back into life in Paris.

November is about wassail, pumpkin cookies, Thanksgiving presentations, and this year: Hannah's baptism preparations. It has also come to mean EEGs for the past 3 years. I distinctly remember my anxiety 2 years ago at the Thanksgiving table and Parker's multiple seizures and adding more meds to get things under control. And then the great news that followed when we returned home to find that DR Q was so pleased with the "normal"results she couldn't wait until morning to email me. Last year, I was weepy and grateful throughout November for our bounteous blessings. This year, all seems to be as it should be. I feel a certain calmness that only comes with great trial.

I feel that I am just a small part of a big universe and I try & ebb & flow with it. I try & love and serve & nurture people around me, and be more intuned to spiritual things, in a spinning world of chaos. I try not to lose my cool. I try to be more organized, and waste and use less. I try to love more, and completely....and read more, and things of value, my time seems so very precious now.

Parker is doing fantastic. It's my new word of choice. Albeit a disheartening meeting with Mr Franzoni and Parker's main speech therapist at CEOP where they think he is having a hard time acquiring & keeping knowledge, his speech seems to be progressing. I had a hard few days following that meeting where they suggested we get his eyes checked, and meet with a pediatric psychologist to get his poor sleeping patterns under control to see if that would help his memory capacity.

But I am constantly reminded of a talk I had with a wise man the weekend of November 6th. He is the president of the branch of our church in Tours, and he used to live with his family in the suburbs of Paris. John & I met with him years ago and I was touched then by his wisdom and intuitive thoughts and his calming presence. He asked about Parker, this time when we saw him. Or perhaps more appropriately, commented, on his health & strength as he witnessed his activities during church on Sunday. And he told me, "You know, the prayers that were offered in Parker's behalf are still coming to pass. They are still valid and in place for him today...." When he said those words, it was like a calm whisper to my soul. I guess I knew that in the bottom of my heart, but at the same time, I feel like life has moved on. The major prayers have already been answered: He lives! He walks! He talks! He hears (with his CI)! He is so very happy to be part of this life. And so I forget that those many prayers offered long ago are still helping him today, and will continue to do so for as long as he needs them.

And he still needs them.

And I still need them.

We need them less, and perhaps less often, but there are times when we still desperately need them.

I was worried about his EEG. All that it means, it's exhausting keeping him awake until we get there, forcing him to put the spiderman cap on, and all of the sand and water, and holding him in my lap, trying to get him to understand why and what we are doing, the myriad of questions from the EEG techs and just interfacing with the dirty, old hospital, and all of the people there with illness and heartache & suffering....but this time, it was so easy.

He marched in like a big boy. He climbed into the chair all by himself. He put on the spiderman cap, and let them start to work, hooking him to electricity and computers.

He smiled the entire way through. And evidently, the techs said that all looked as it should.

We are awaiting official news from Dr Q, but it was truly just another day in the hospital, like another day in the park, for me and Parker.

And now we ask the question since his EEGs have been normal for some time, whether the neurologist at Necker is right in thinking perhaps now is the time to take him off his epileptic meds to see how he does without them.

It's scary & encouraging at the same time.

We have much, much much to be grateful for. I am grateful every day of the year, but thankful for a holiday to express these thanks even more so.

I thank God for trial, and suffering. I thank Him for forcing me to grow in ways I never dreamed possible. Repeatedly. I thank Him for answering my prayers every day, not only for Parker, but for 4 gorgeous daughters, a loving husband, unwavering friends, and family. I thank Him for health & strength, and science and technology. I thank Him for opposites-good and bad, health and sickness, virtue and vice. So that we can differentiate between them, and choose right and goodness. And appreciate the health and happiness when we have them.

My heart is full. My life is rich. In essence- WE ARE FANTASTIC.

It's so much nicer responding to the question, "How are you?" With this reply. For years, I just avoided the question by asking the asker the same question.

Ups and Downs, Getting Stronger, the Stakes are Higher

Penelope has been speaking full sentences for ages now.

Parker is just now getting the concept of 'up' and 'down'. He's also picking up 'off' and 'on'. He associates seeing an airplane with a song that I sing when we see airplanes. He started signing, 'betise' today while lying on the airport security checkpoint floor, and enjoyed the reactions he got from his sisters. (Bêtise is the French word equivalent for 'naughty'). When he sees a cat, he doesn't say 'cat', he says 'meow'. When I say 'cow', he signs and says, 'moo'. He calls everything the color 'blue', and anything with wheels, a "car" (albeit a tractor, garbage truck, blade scooter...)

It's a long journey. I am ever the optimist, but sometimes I think we need to pick up the pace a little since his learning curve is so huge. He has a lot of ground to make up, after all.

I read somewhere once that a deaf person has to experience and feel something a hundred times more than a hearing person to actually grasp it's concept. This seems to be the case here.

I wonder how much he hears from his traditional hearing aid...and how difficult it really is for him to hear and process and interpret the sounds that he does hear with his cochlear implant....I think we expect a lot from him, when he repeatedly and perfectly says, "Mom, Mom, Mom" to get my attention, or "Daddy, Daddy, Daddy". He says somethings flawlessly like "apple", it makes you forget he's deaf at all. But when I try and get him to say "off", he just says, "ahh", as if he does not hear the "fff" ending. Am I surprised? Yes. Am I frustrated? Yes. He doesn't get it after my repeating it 20 or 30 times, while accentuating the "ff", with his fingers on my lower lip to show him the air expulsion at the same time as the lower lip vibration. He smiles and laughs at my exertion.

Abby told me today he smiles and laughs at everything. It's true.

Why? Does he know more than the rest of us? Does he find this all humorous? Is he so full of life and happiness because he's been so close to death and misery, that he simply can not find it all amazingly hilarious?

He's always been the smaller twin. He weighed less than OP at birth, she's always maintained the nickname of the "chubby twin" UNTIL NOW. Ok, we still call her the chubby twin, I think it's because she's squishy, and her hair is just-oh-so-fluffy. But for the first time since conception (likely), Parker outweighs his twin. She's still taller than him, but man, he has bulked up. He has thighs of steal. TRY HOLDING ONTO THAT SCREAMING TODDLER WITH HIS BOOTS ON! It's tough.

I watched him climb up play structures repeatedly the past two weeks the kids were out of school, amazed at how easy it was for 'normal' kids, and how matter-of-factly people around me assumed he was just another 'normal' kid. I think it's cuz his hair was long and often hid a lot of his headgear-- and that he never stays still long enough for anyone to inspect it. It's just when they see me start to sign to him, that they realize he is different, unique, special.

Which begs the question again, "What is normal?" and "Why do we try so desperately hard to be normal?"

As he gets older, I realize the stakes are higher. The range of normal will begin to diminish.

Were just plugging along, not much major to say, still making progress. Upward and onward as the say, one day at a time.

The Seasons Change, Like They Always Do....

"Autumn is a second spring where every leaf is a flower."--Albert Camus

It is time to put away the broken heart and sadness. It is time to lock it away and keep it for only sacred learning, growing moments. It is time to suck up the pain, breathe & walk forward.

I can say meningitis without wanting to throw up anymore. I can explain Parker's hearing apparatus without tears coming to my eyes, or a lump settling into my throat.

I am ready to put away the sick baby syndrome, and embrace him for what he is, now, finally, and what he will become, and no longer what he should have been , or could have been.

I am ready to put him in time out, and say "no" to him when he needs to be taught.

I am ready to put him in line with the girls and make him stand in his place. He is well enough now. I am well enough now. (Thank goodness!)

My girls need me to be the mother that I haven't been the past 2 years.....185 days, a billion minutes......, and unnumbered seconds.

I am ready to anticipate 20 years of speech therapy with Parker, but recognize that Hannah, Axelle, AND Penelope need it, too.

I am brave enough to look into my own future and wonder if I will become deaf (or blind or paralyzed or whatever...), and how that would effect me, and my children, and my husband, my life, my attitude.

It is time to be okay with whatever life brings. It is time to soar again, and love more. It is time to understand completely where others have been or are bound to go.

And have compassion for them, or wisdom to share.

The seasons change.

Like they always do.

I always love the Fall in Paris. We've packed away our summer clothes, starting making pumpkin soups and cookies, pulled out the warm grays, goldens, and burgundies, deep purples. We are preparing for Fall. The kids are painting pumpkins, we are thinking of Halloween, and I stop to watch the leaves fall in the brisk, cool wind. And I have to take a step back from the everyday moments, and thank God for our trials, thank God for our growth. Thank God for our loving family & friends. Thank God for our good medical care. And as I step back, I realize my babies are no longer babies. My oldest daughter will be a decade old this week....and my babies are in 1/2 day preschool. And they talk, and talk back. And run, and have opinions. And I think I am (finally) ready for a change, I am finally capable of making decisions, whereas for several years/months, my decisions were dictated by urgency and medication and doctors appointments. I should feel light, but I feel tired, run down, a bit worn. But with that weathered look on my face, comes so much wisdom, so in the end, I guess it was all worth it. It IS all worth it.I am ready to clean out cupboards, paint walls, change room assignments, de-clutter my home-our home, my brain, my heavy-laden spirit, and frolic again. And read more, and sing more, and dance more, and enjoy more, and live more. With my love. With my husband, of many years who is very patient with me. And with our gorgeous sometimes spunky little chickens that are growing right before our eyes.

And this scripture just keeps coming to mind:

Ecclesiastes 3:1-13 "To every thing there is a season, and a time to every purpose under the heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to get, and a time to lose; a time to keep, and a time to cast away; a time to rend, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time of war, and a time of peace. What profit hath he the worth in that wherein he laboureth? I have seen the travail, which God hath given to the sons of men to be exercised in it. He hath made every thing beautiful in His time; also he hath set the world in their heart, so that no man can find out the work that God maketh from the beginning to the end.

I KNOW THAT THERE IS NO GOOD IN THEM, BUT FOR A MAN TO REJOICE, AND TO DO GOOD IN HIS LIFE. AND ALSO THAT EVERY MAN SHOULD EAT AND DRINK, AND ENJOY THE GOOD OF ALL HIS LABOUR, IT IS THE GIFT OF GOD."

Amen to that.

Oh heal my bleeding heart!

"Ca y est!"is a french term that means "We are there! We did it! We have arrived..."

Today I sighed a huge sigh of relief. And just kept thinking, "Ca y est!"

Another huge milestone for Parker was reached today....

I have worried about and dreamt for years for this day to come, and it is finally here! Parker started traditional or what I call "hearing" preschool today. And I didn't realize how much I emotionally needed to see Parker & Penelope walk hand-in-hand to school until they did it this morning.

The english teacher, the french teacher and the assistant were all very welcoming to Parker. It really went off without a hitch.

But all morning I didn't know whether to laugh or cry. So I did both, repeatedly.

It's the first time in 10 years that I have no children in the house for a space of a few hours in the mornings. And I honestly never dreamed we'd come as far as we have to this point with Parker. The day I realized that he would likely not start school with his twin was a hard day for me. And I have dread the outcome of the future up until now. The harsh reality of the ravishing destructive bacteria on my baby's brain--and the long term effects on his learning are yet to be determined. I realized that he would go to a deaf school, and that his twin would attend the same school that all of our other children have attended.

And yet, he did, basically, start school with his twin. A bilingual school that accepted my deaf son. No, it's not as it would have been (with no hoping & praying and special meetings to see if they could accommodate him), and I should be allowed to mourn that, right? It's just a little different than it could have been-- with a lot more fanfare than I expected way back when.

And its glorious. My heart soars. In some sense I feel very whole again....

Mostly. Kind of.

But I feel more broken, again, too.

I can feel my heart's scars pulsing as I type. What have been sealed scars for many months reopened today.

I can feel my broken and re-sealed heart leaking a bit, and I'm not sure whether it's because I am so filled with joy that it is tearing at the seams, or that the wounds have actually broken holes through the sutures again for suffering's sake. That the reality of these next few years and the outcome of all of the running around & hard work and therapies all manifest in the lasting effects of the meningitis in relation to Parker and his learning will come to head makes my heart beat heavy--and hard.

Will he be able to speak? Will he understand? French? English? Signs? Can he process speech and respond appropriately? Will he make friends? Will he understand when the other kids question him about his hearing head-gear? Will he be ashamed? Or proud? Will he be afraid? Or unafraid? Will he stand tall or run and hide? Will his twin stand up for him, and teach others to accept him as she has? Or will she, too, be ashamed of him, his differences? Will he be able to make circles, squares, triangles? Arms and legs, on a body while coloring? Will he learn the colors red, yellow, and blue--as their class objectives this year? Will he be able to run and jump and play without me worrying that he will fall and break his head open--- every single time?

My heart bleeds.

It bleeds today. It sort of oozes with every passing beat.

It's busting at the seams with hope and excitement at this day, and the future, but it is aching at the pain and suffering and exhaustive work this bacteria has given us-me and my son. My family. I bleed for pure fatigue. I bleed for joy. I bleed for pain. I bleed for anticipation. I bleed for wonder of what the future holds. I bleed.

I envision huge, loving, strong Godly hands cupping my heart ever-so-gently with skilled care and watching it beat, and seeing those wounds and wishing I didn't have to suffer. All the while I can feel Him whispering to me, "It is for your own good, for learning and growth, and understanding of eternal things". He whispers assurance to me as He takes my beating heart, holds it a little more tightly to prevent the wounds from bleeding out. Then with very skillful hands, works His magic thread and needle to repair those wounds once again. I know the scars remain, but I feel reassurance knowing He is mindful of me and my broken heart that still beats, and still oozes and still yearns for flawlessness. He sews up my pain again, holding my heart in His hands. Keeping it together, and watching it beat, assuring it beats. He wills it to beat and keep on beating. I accept it. I accept his skill, His knowledge. I welcome His love.

Sometimes I still ache, and I completely entirely feel those gaping scars on my beating heart, but they haven't bled for months. Sometimes they leak, sometimes they gush, but for now they are mending, I can feel the healing master and His thread at work. Keeping this little heart of mine at work.

Big progress. Progress.

Ca y est, Parker. YAY for the special chair that arrived in time, but honestly those little kids are moving around so often I wonder how often Parker will really actually be seated in that little chair. And Hooray for EAB for welcoming him with open arms. VERY open arms.

Nagette, the woman assigned to help Parker said to him when he arrived, "Nous sommes tres contentes que tu est la avec nous, Parker!" I could tell that she meant it. I bit my lip and held back my tears. At the parent/teacher meeting tonight I thanked the teacher for her acceptance and attention and tolerance of Parker. She wept a little with me (which is VERY un-french), assuring me that Parker would learn many things from the other children and her this year, but that the lessons he would teach his comrades would be life lessons of compassion and tolerance and acceptance. That his presence would teach them things they could not learn otherwise. I found her to be a shining, perfect angel at that very moment. I anticipate other moments in the next 9 months that I might repeat those sentiments.

So I bleed a little today. But in hopes for the future, my sutures reopen. I allow the Master to take my heart in His loving, gentle hands and heal it, fix it, make it anew, or at least block the flow and allow me, and us to continue onward. Ever onward. Beat heart, beat, and heal. Bleed if you must, but just keep on beating. For him, for them, for us.

Oh-la-la!

So Parker has been back to deaf school nearly 2 weeks now, and it just seems a little anti-climactic since the hearing school doesn't want to take him until some other things are in order. His "convocation"paper had him listed as starting today, but his teacher, whom wants him to call her "maitresse" wants him to wait until next Thursday to start--with some very important accompaniments---a special chair and a special assistant.

The documents for Parker to get his special state-appointed-and-funded-assistant were submitted by hand on June 10th. We should have heard something by now but have not. This means there is no news yet, on whether he will have an "AVS"which stands for "Auxilaire Vie Scolaire"or---School Life Helper (give or take). And the deaf school recommended Parker have this AVS because of his equilibrium problem. The teacher (remember, maitresse?) was worried about looking after him all of the time, and potentially neglecting the other 14 (non-handicapped) 3 yr old students in her class. And that walking to the park for recess may be too long and tiring for him, and that he may need more help getting set up to do his work, etc, at the table when the official (3 yr old) work begins. Also, the deaf school recommends very strongly that he has an adorable little chair with arm rests on it, making it easier for him to get up & down, as he needs a bit more stability while moving (since his world is theoretically spinning every time he moves).

So rather than wait for the handicap department to tell us whether or not they would provide the chair for us, John and I have decided to buy the chair ourselves, and hand-walk it over to the classroom.

But we still have no news on the AVS, and I must admit I am hesitant to suggest that 'La Maitresse" will allow this wonder boy to start classes as planned on Thursday without his chair (what if it doesn't arrive in time?), or his Aide Vie Scolaire....what if he is not granted one? Will he still be permitted to attend???

So I'm crossing my fingers, and not holding my breath.

And sooo proud of him these past 2 weeks for putting on his huge backpack and marching out to his taxi with all smiles and his Toy Story Woody doll to accompany him. You can see a spring in his step, and his head is held just a little bit higher, and his shoulders a little bit broader, when he walks back through the door each day.

And I just have to laugh when I imagine what they might be teaching him in a US cochlear implanted preschool with sounds & gestures. Parker has 5 that I know he is working on recognizing a picture, and being expected to make the sound and sign/mime while making the association:

1---"No! No! No!"which we can all agree is a good one to learn, and sooo very french, with an extended index finger waving back and forth in front of his face.

2---"Mmmmmm", said while rubbing his hand in circles on his tummy or chest (so as to say, "this is a yummy mousse au chocolate!"etc.)

3---"Shhhh" while said with the index finger in front of the mouth. (Incidentally, he does not get his one, but he tries!)

4---"Court!" which means "Run!"and he is supposed to jog in place

5---And the newest one: "Oh-la-la!"while raising both hands, bent at the elbows along the sides of his head. This could be translated as, "I can't believe this!" Or "Are you kidding me?" or "You are in big trouble!"depending on who is your translator, or what the context is.

Isn't that hilarious?

You should hear him say it! Its more like "Ohh-yah-yah!"

Yes, I know I come across as being too rushed, and bossy in this video. But as soon as I turn on the camera, he is obsessed with watching it himself. And sorry, Penelope, I did not credit you in the video for saying, "No! No! No!". You are amazing, sweet girl. I love you, too. Truly.

Being special means you are truly exceptional

Photos courtesy of our dear friend, Hal, at he and his wife's gorgeous home on a perfect afternoon in Fontainebleau this summer.


So I know that you all think that the term "special" is kind of derogatory while referring to handicapped people...right? But I had a huge revelation that whomever coined that term, was sincere and spot-on. It's only those of us who have not had the privilege of knowing truly "special"people who have come to misinterpret it, and misuse it along the way.

We are so happy to be back home in Paris, and sleeping in our own beds. We had a two month stay in our dear friends' gorgeous empty home in the french countryside this summer. The past two summers have been manic for us, and let's face it, since the twins were born here a little over three years ago, there is rarely a quiet moment in our midst. So we made a conscious decision to stay in one place and enjoy the garden (the french term for yard--it's much more charming, isn't it?), and each other. Like all good house guests, we wanted to buy our friends a thank you gift for allowing us to stay there, so in true American-style, we bought them a swing set. Admittedly,it's for our kids, too, to play on when we are invited there to stay :)

But the morning the swing set was arriving, the delivery man called and said he'd be there between 10 and 10:30. I thought this was much more specific than the usual 9 am and 1 pm, so decided to open the big gates and cut back the overgrown trees on the busy street facing the Quimbrot's home.

Knowing there were a lot of cars that passed this small country road, we usually always left the front gate closed, and locked with key. Apparently Parker is like many other small boys his age, he throws everything he can out the window, every electronic is covered with water, swords and balls appear out of thin air...And I was worried that Parker would actually climb out an open window while staying at our friends' home. Or run into the seemingly quiet country street only to encounter a speeding car. But I truly did not expect what actually happened while we were there this summer.

All of the children were playing very happily in the house and the older girls are getting more responsible, and usually looking after the twins with some skill these days, so I decided it wasn't completely unreasonable to open the gate, wait for the swing set delivery, and cut the trees lining the road, assuming I would surely see or hear little feet passing me before headed for danger in the street behind me.

But 10 turned into 10:30, which turned into 11, and 11:15 before I thought the swing set may not actually make it's way from Germany or wherever it was coming from after all....and I continued to weed in the front garden. Suddenly I heard a car pull up and a man got out, ran over to the neighbor who was apparently in his front walkway. He asked very matter-of-factly, "Tu sais a qui appartien ce petit garçon?"----"Do you know who this little boy belongs to?".....For a minute, I thought to myself, "That's strange, a little boy has gone missing, or was found, and in this small town, no one knows who he belongs to? Hmmmm"I kept on weeding....It honestly took me 30 seconds before I realized I should look and see who this little boy was.

Of course.

OF COURSE IT WAS MY LITTLE BOY, PARKER. How on earth he got passed me, bare foot, and ran up the street, and was found in the curve of the street IN THE MIDDLE OF THE STREET, 500 meters away--only God knows.

Of course I was shaken, and surprised, and ran up the street to say, "A moi! A moi!"He was MY little boy. He BELONGED to me. And they found him in the street.

"Slacker American mom with too many kids"...I could almost hear them thinking, with a much more french accent, of course..

And after I shut and locked the gate, with Parker safely in my arms, I couldn't help but feel culpable....but at the same time realize very matter-of-factly that again, there are angels watching over this little boy.

And he does not, really, belong to me at all. He is just on loan to me from God. He is truly God's son, he just has our genes....and yet I think I am bordering on negligence, but perhaps he does have 9 lives, if such a thing exists.

I think he is destined for greatness, not because of me being his mother, but in spite of me being his mother.

The next day the neighbor peeped his head over into our garden and said, 'Parker, you gave us a big scare yesterday." He then told me he didn't believe in God, but believed that we all have a star that watches over us. Whatever you want to call it, I know Parker has it, and I know for a certainty.

And that is special. Oh-so-very-special. It's like he has been touched by an angel, or the Hand of God, and he is soooo very very special. You can feel it in his presence, see it in his eyes, feel it when he laughs.

Again, I thank God for his safety, and feel like the Gods and destiny are much greater than I am. And he truly doesn't belong to me after all, but to a greater universe.

And yes, I think we are ALL special, and unique and lovely....but maybe "special"people really are more special than the rest of us.

Boy, He's a Naughty Little Pirate!

So Mallorca is one of our favorite vacation spots.

We usually hit it at Easter time to get away from the grays of Paris Winter that sometimes carries over to Spring. But this past Easter, John was so busy with work, and me, with the kids, that the Easter holiday came and went almost before we even noticed. Since we missed our pilgrimage to all things warm and beachy, lots of sun, pools, golf, and tennis, I begged John to consider taking us in High Season. As usual, he did not disappoint. He spoils us. We even go to one of my favorite places in the world-The Campers Shoes Outlet. Today, we bought 12 pairs of shoes there. Can you imagine?

But I'm reflecting on where we were last summer at this point, and two summers ago: Two summers ago, our heads were still spinning. Parker had his hydrocephaly surgery two Easters ago. Poor lil guy could hardly hold up his head as the girls hunted for eggs in Marbella. I remember it too well. Then we headed for the reprieve of my parents' pad in PV so the girls could swim, and we could check out the John Tracy Clinic in LA, and continue to drag him to Physical Therapy session 2-3 times per week. We needed that safe haven.

The following Easter was that volcanic cloud craze, and there were no flights for days into or out of Europe. My prince charming heroically navigated our family of seven through storm clouds and 12 hours of driving to make it to Mallorca, rain or shine, flights or not! We really needed a vacation, and the sun. Then last summer we spent surrounded by loads of cousins and love and fun in the good ol' US of A. It was fab, but so much work.

This summer we are just chillin, and after three years of running, I think it's ok for us to stop and catch our breaths.

Mallorca has never seemed so much like Southern California to me before. It's where I grew up, and I have only warm fuzzy feelings associated with all things SoCal. My parents and upbringing were, in retrospect, picture perfect.And Mallorca is now representing all happy family thoughts for me. The sun shines here on average the same number of days per year as Southern California, over 300. And after living
in Europe a year or two, and staying in a myriad of inconsistently rated hotels, John and I decided we were lifelong fans of Marriot. So here
we come, to sunny days, nice amenities, and consistent quality. The girls take tennis lessons, and we play golf. And we do lots and lots of
swimming, and barbecuing.

But if we had come at Easter this year, the twins would not have been three. And you can't go to kids' club till you are three.

Parker and Penelope head out to kids club every morning with three big sisters for loads of fun: face painting, tattoos, football, mask-making, mini golf, bowling, swimming, shooting games, lots of Barbies for the little girls, and balls and climbing structures for boys. There are always lots of sparkles on the girls' faces when I pick them up, and remnants of chocolate cookies, or lollipops in grubby little hands.

I can't tell you how amazing it is to drop off five little ones in great hands, knowing that every single morning, or afternoon, they return with
new ideas, new stories, new friends. And in the back of my mind, I'm always worried in these types of settings, they will say the first time I drop off Parker, "I'm sorry, we cannot accommodate handicapped children." Or I carefully monitor their faces when I explain his hearing aid/implant like it's no big deal...and afraid they will reject him.

And they did not refuse him. Or reject him. And in between our mom and dad visits to the gym, or hitting range, we've caught glimpses of them outside on their way to kids' yoga or on a pirate treasure hunt, and each of our children look happy, content, well-adjusted. Even Parker.

But the thing about Parker that Abby really wanted me to post about is how NAUGHTY he is! Parker is a crazy little man-boy. Endlessly full
of energy, and joy.

Everything is a ball or sword to him. To bribe him out of the driver's seat of the car, you have to tell him you will play ball with him. When it's time to eat, he runs to the table saying in his deaf lil man voice while signing inquisitively, "ice cream? ice cream?". He woke up from his nap a few days ago, (and the rest of the villa was quiet, the girls were at kids' club and John was playing golf), and I thought I heard the front
door open and shut. I opened the door to find Parker sprinting to one of two swimming pools within 100 meters from our place. Every time the back door is open, he literally pushes people and things over to get some fresh air. I've built an impressive blocade from our garden to the common areas with a combo of lawn chairs and a sun umbrella. It deters him for a few minutes, at least slowing him down long enough for us to catch him before he decides to take a dip with his costly headgear or goes missing into the street or something.

If you want to distract him from something, the ultimate bribe is to say, "Parker, do you want to go outside?" He will say, "Ow-sigh? Ow-sigh?" until he is pacified. We are terrified he'll wake up to go swimming in the middle of the night, so we barricade the front door, and tie the back door shut. He throws food at the table. He stabbed Hannah in the eye with a fork at lunch awhile back. Axelle refuses to sit by him during mealtimes, no one can blame her. He reaches into the fire while John is cooking on the BBQ. It's like he has no concept of danger. My dad said today, "He seems to feel no pain". Each time you put him down in a public place, he literally runs as far away as he can as quickly as he can from you. When you tell him, "No,", he will stop, turn and look at you, and smile the cutest smile you've ever seen, at you, in attempt to change your mind. Literally, the sun shines from his smile, and little face. Usually, you can't help but smile back at him... And
he takes that as an unspoken consent to his naughtiness.

He's plain naughty, and always into trouble. I just hope it's a phase, and he grows out of it.

I honestly can't believe he stayed still long enough for them to paint his face on Pirate Day. I asked Abby who held his head still? She
replied, "Me, of course!"

He's a naughty little pirate, and we are so happy he's here with us!

Happy Birthday Twins!

Penelope spent the day wearing her new summer pajamas, and riding her new scooter around the house.

Parker woke up at 3 am with an asthma attack, then didn't go back to sleep. We went to CEOP with his teacher for next year to observe what they do there for his individual speech therapy session. He was not up to par, but tried his best. It was fine.

We had a picnic in our salon for lunch (one of my favorite things in the world, actually, with all of my little chickens on my lap), then we all made really fancy cupcakes for the twin's birthday. It was fabulous, and the twins couldn't get enough cake.

Parker woke up really grumpy from his nap, and now we're off to dinner with the kids to celebrate.

I think we're all ready for a vacation. We've been discussing deleting June from our calendars for next year. Its just been too busy. We'll be happy when school is out next week. What do you think??

Have a great weekend!

Absences are the same as Crises

There is so much to learn about the brain, it is incredible how little even the "experts" seem to know. Sometimes I think I could be a consultant for the neurologists. I am, afterall, living with (and trying to case manage) a neuro-challenged specimen.

So as it goes, the same thing seems to have happened this spring that happened last spring. Remember Parker climbing out of his crib seemingly uncontrollably? We first thought it was because he was excited and determined to climb. But as it turned out, it was his brain sort of short-circuiting him awake. And at that point it was difficult for him to find sleep again.

So we upped his meds, and he got "better".

Well a few months ago, Parker started waking up between 3 and 5 am. AND STAYED AWAKE UNTIL HIS NAPTIME IN THE AFTERNOON. This was significant for a household full of people who usually sleep during those times. It meant that the exact time he needed to get ready for school (CEOP) ,and I also needed to get 5 other people in the house ready for school, he needed and wanted to be held, and reassured, and basically wanted a nap about 8 or 9 am.

The doctors chalked it up to a "normal"phase some children go through at this age, or nightmares, or who-knows-what-it-doesn't-matter-to-me-all-that-much-becuase-it's-not-me-waking-up-all-night-long-repeatedly-for-months-it's-unfortunately-you, Madame.

That was the way I felt, anyway. But I was beginning to have very hazy thoughts because I was very plainly sleep-deprived, so I didn't know what exactly to think or do at that point.

But I climbed into a very welcome bed about 12:20 one night, and at exactly 12:30, ther were little boy noises coming from the twins' room. He stayed awake all night long. Poor little guy then went to school, and did a great job they tell me....

But, they also told me they thought he was having "absences". What is that? It's when your brain actually stops sending electricity to the next part of your brain to complete the task you are working on....for a few seconds, then starts up again when it figures something should actually be done about the obvious malfunction.

I learned today during Parker's EEG (but I'm getting ahead of myself) that absences only last 5-10 seconds.

But people seem to think that absences are not as serious as "crises". The french word for a seizure is a "crise".. Yes, I think it would be considered a crisis if your brain started mis-firing and sending bad information to your limbs, eyes, tongue, etc to move repeatedly and involuntarily, so chalk one up to the french for that terminology. Its much more explicative than "seizure".

So for months I have had the impression that "absences" are just not as bad as "crises"....but truth be told, its not as tiring for the epileptic patient, but its basically the same thing. Humph. This is disconcerting, I think to myself. And Parker is having them? For real? I hadn't seen one until today.

We do not want Parker having absences or crises, they both signify brain abnormalities, and to me, brain lesions--which translates to---brain damage.

But the good news is his EEG looked great today after we've increased his meds. The bad news is that he clearly still needs these meds, and my prayers for him to have "no more brain lesions or epilepsy"have not yet been answered.

BUT many of my other humble prayers HAVE been answered with time, so I must be patient, and finally soak up all I can about deafness, implants, hearing aids, deaf education, hydrocephaly, vestibules, bilingual education and brain-compromised (do I prefer that?) children, and a bunch of other important stuff--like the difference between an absence and a crisis.

For those of you who prayed for us today, THANK YOU! It was very painless comparatively speaking. Parker put on his spider-man mask (what I call it--you would, too if you saw it), and sand in his hair with the electrodes in style--(I joked that we were going to the beach--the techs just love it when we show up)--and even slept without a fight. That was a wonderful blessing for a tired mama.

But he is sleeping better at night. UNLESS HE SKIPS HIS NAP. THEN HE WAKES UP AT NIGHT. Weird, right? SO much for the old adage of keeping your toddler awake so they sleep earlier, longer, and harder. It's just not true. It's just not true for Parker. He needs a routine, and he needs to be consistent in that routine.

ANd apparently is very sensitive to having absences (I still prefer them)if he is sleep deprived.

Sleep child, and onward, soldier. Onward we go.

Tomorrow is the twins' birthday.

I can't believe my babies are turning three. It's amazing.

Awesome!

We have some friends here in Paris whose children attend the same school as ours. Like many of the families here, the couple is mixed. The dad is British, and the Mom is french. A few years ago, our oldest, Abby, went to play at their house. After she came home, the dad said to me, "Her accent is very Californian". I wasn't quite sure what he meant.

We talk about accents alot here, of course. Mine is good, yours is not so great, did you even understand that talk in french today at church cuz all I heard was the spanish "y"s stuck in there where there were supposed to be "et"s, etc. When we first got here people would say to John, "I see that you are white, but you talk with a black accent."Now that is cool, we thought.... A big white guy with a Haitian accent (served his mission there partly). We occasionally have to ask the children if they will get marked off on their english spelling tests if they spell things with a "z" like all yankees should, or if they are obliged to put an "s"like "proper oxford"pupils should (for example, organize, for organise). OK, so you get the idea, we're always talking about accents here, and whether we say "bath"or I can't even begin to write how our english friends would say it....or banana (buh-nuuuh-na??)

But Parker has an accent--"Un petit accent americain"according to his french speech therapist. Of course that is not the goal AT ALL to keep your accents when you speak a second or subsequent foreign language, but I must admit I loved it when my (then) 5 year old daughter once told me: "I want you to read this (french) book to me in english mom, not french."When I responded to her that I will read english books to her in english, and french books to her in french, she responded, "But, you don't really talk like la maitresse (teacher) mom, you speak a little bit espagnole!"(see-- I don't even know how to spell anymore)... I was convinced my accent would never win any awards. Every now and then (many years later) someone mistakes me as a Swedish or Dutch woman, and I am actually pleased that they didn't guess British or American. (It means my accent was not grossly obviously anglo).

So the fact that Parker has an accent that is anything but "deaf" I think is of course totally awesome!

He's repeating the last word of every sentence these days. Life seems good, maybe even awesome. Of course some of his articulations are not right, but we're making progress. I counted 120 english words, and 45 french words the other day that he says.

awe·some

 [aw-suhm]–adjective

1.

inspiring awe: an awesome sight.

2.

showing or characterized by awe.

3.

Slang . very impressive: That new white convertible is totally

awesome.

Or I might say: That little deaf boy sure is awesome!

And that is what my friend meant when he said that our accent was Californian. That our kids say things like "awesome" or "totally" mixed in with "garbage" instead of "rubbish"or "elevator" instead of "lift".

Hmm, I wonder where they learned to say that?

Now I've got to teach Parker that word.

This video is not the best sampling of him saying " I love you", but it's still evolving. He actually said it best when he first started. I don't mind. We've got room to grow. I know what he's trying to say.