Parker Va Bien

I have actually grown accustomed to having dry eyes of late, but the month of December always makes me mindful of the Christ-child...and quiet for whisperings of heavenly things. SO for me, again, I seem to be more prone to tears.

Parker has begun his courses at CEOP and I accompany him every Monday and Friday morning. Two classes I am required to attend:his individual occupation therapy and his individual speech therapy. But he now has some group communication classes as well as what looks to me like playtime with other deaf, implanted toddlers.

I was invited into his first class in the room labeled "Jardin d'enfants". I was meant to ease the transition with him for his first few minutes. But we came to class in full swing, and what I saw was strikingly beautiful. These 5 minutes will be forever etched into my soul. I'm certain there won't be many more moments in my life quite as magnificent.

These children's chairs were lined up against the wall. It was snacktime.

I saw these teeny children, babies on the cusp of childhood. These deaf, baby-almost-children were signing and speaking and communicating.

One boy signed, "gateau", another girl signed "boire", another "l'eau"...

They were meant to stay seated in their chairs during snacktime. Imagine keeping one hearing toddler in his chair during gouter. Then add 5 more little ones and hearing deficits, and other potential difficulties, and I suddenly admired this team infinitely more than when I entered the room.

Parker has only been walking for about a month. He's two, and he's a boy. It was the first time he was in the classroom, surrounded by toys and games and slides and chaos. He was excited to explore. But his speech therapist was kneeling next to him, and sitting him back in his chair, literally every 2 seconds while signing & saying, "assieds-toi" (sit down), repeatedly.

It was comically beautiful.

My world and worries of the past many months seemed to boil down to this very moment in time...

Would he succeed?

Could he stay seated?

If he couldn't, would they refuse him?

Could he hear?

Could he even understand what they were saying (in french, or LSF) to him?

Or is his brain even capable of learning and hearing and assimilating such things?

...."And you want me to have a cookie? And drink? Next to all these other kids? With our backs against the wall? With all of these other things to see and do and be?!?!?!? And I've only just started exploring the world in an upright position. And how looooonnnngggg do you expect me to stay put?" I could almost hear his little brain thinking, while watching his face from across the room. He was trying so hard to contain himself, and take it all in.

I fought back tears twice, for the sheer, perfect, beauty of it.

For these gorgeous little creatures.

Some who spoke, some who signed...all who communicated in some way or another.

Including Parker who clearly communicated that he was in fact, not capable of remaining seated in this new environment.

He wanted to check things out.

But what I saw was that not only were these children beautiful in their very uniqueness. But their beauty was actually in their commonality.

No matter how much I want to think that Parker is just like us, just another one of us...., he was so much more like these other two year olds. He is living and hearing like them. Not like me, not really like us.

And that was surreal for me.

And I thought of the roads that each of these children have already traveled, and where they are destined to travel before their journeys complete.

And how much their parents love them. And how perhaps, some of these parents' hearts have been broken as mine has been, to hear or see the news of their baby not hearing.

And how these same parents must rejoice in the successes of their beautiful little ones. As I do mine.

And how much these educators love these children. And how hard they work for them.

Parker had a brain scan check up in December. I've decided its quite possibly one of the worst places on the earth to be. Not only because I hate the fact that me, we, my baby are in this situation...and not only because they wrap Parker up like a baby-mummy on a hard plastic board to put him into the machine, or because they ask me to remove his hearing devices, his deficient 5th sense to do it.

But because it is old, and dirty, and I see other children in comas, on ventilators going to x-ray or MRI, and I wonder what their destiny holds, and how, and if, their lives will change after they wake up from this coma. If they wake up from that coma. But also because I remember that heavy, looming, waiting, and wondering worry. And it brings me back to that same, old, dirty room....how ever many months ago.

Parker and I strolled into Necker. Upon arrival to the waiting room for the MRI, I saw a mother holding and gazing into her newborn's face. She was tired, stressed, yet relieved. We moved onward down the hallway. Next, I saw a couple sitting close together, he, with his arm wrapped tightly around her. The woman had obviously been crying. Their destiny waited behind those closed doors to the scanner...with their baby of 4 months. I sat down next to a woman and her pre-adolescent son. They were cheerful, but worried.

I sat there, realizing we shared a horrifying commonality: our destinies were tied to the results of these medical exams. Our futures would be determined by those reports...

And after about 30 minutes of chasing Parker around the waiting room, I happened to come back in as I heard the tech assistant say to the mother of the about 10-11 year old boy, "Your son's brain scan was perfectly normal!" The mother burst into tears, held her son in her arms and said, "This is the best birthday present I could ever get!"

I turned my head and wept.

Wept only as a mother heavy with waiting and worry could appreciate the magnitude of these words. I wept for her joy, for her son's brighter future, for her relief, and for this sanctuary of a dirty place who gives such news as this.

So after Parker's scan, we went to see the neurosurgeon. She was very impressed to see him enter her office on his own accord. She had forgotten her prophecy that he would walk in 2010. She reported a slight decrease in his hydrocephaly, and would expect for things only to improve from here on out.

EXCEPT that perhaps since he was so small when his shunt was placed, that the risk of it getting blocked and kinked as he grew was rather significant. I asked her how serious it would be if this happened? She responded very matter-of-factly, "He would just need a new shunt in a new neurosurgery", like it was just another day at the office. She said it was rare for a shunt to last an entire lifetime. And that I should watch for vomiting or change of consciousness, etc.

So puh-lease tell me you can appreciate why I seem so stressed everytime Parker throws up, or seems a bit "off"...or tired...and "No, honey, I'm not over-reacting!"

But it wasn't until about 10 days later when I received the doctor's report that I fully comprehended how far we have come, and what peak we are currently sitting on...

She opened with, "Parker va bien".

Parker va bien?!?!?!?!

Parker is well?!!??!

Huh?!?!?

I haven't said the words "well", or "great" for a veeeerrrryyyyy long time. I may have just begun to say "good" again, when people ask how I am, or Parker, or all of us, and that, at best, is seldom.

I avoided that question for a long time, and still usually do. By asking the asker the same question.

I couldn't hardly believe what I read, so I wrapped up the doctor's notes and carried them around with me for the rest of the afternoon. Abby even asked me what it was, sticking out of my purse. I told her to read it, and that it made me cry. She read it and exclaimed, "Mom! It's great news! Ohhhhhh! I love that little guy!"

So you must realize that he's doing better when you hear that "il va bien"...and if that isn't enough for you, this should be:

He's been in time-out twice this week. He is naughty!

At first we were happy he was doing anything , even if it wasn't exactly angelic. I distinctly remember the first time I found both twins turning Abby's room upside down, smiling, and thinking to myself, "This is the way it is supposed to be!"

So when he did anything sort of naughty, we were just glad he ws getting into trouble like he should, like all toddlers would.

But recently I realized he actually only does naughty stuff. And that we needed to start giving him more limits. I spend my days following him around telling him "no" in four different languages.

Let's face it, he must be doing better if I'm sending him to time-out.

At church last weekend, the kids re-enacted a live creche of Joseph, Mary, and Jesus. All of our kids chose their own parts. We had a heavenly Mary (Abigail was stunning), a shining star (Axelle was so proud and bright!), and 2 gorgeous angels (how terribly fitting that Hannah would be heralding the other angels with a cherubic baby Penelope hand-in-hand)...and one show-stopping, chubby little cow. They were all absolutely lovely, and deserving of many accolades. I was touched, as usual, by the simplistic beauty of children portraying spiritual things.

But found myself again fighting back tears and particularly touched to see Parker, with great enthusiasm, walking up and down the aisle, waving to the crowd, in a tight-fitted, old, hand-me-down, black and white cow ensemble.

I had to stop myself from thinking it was not at all normal or expected, but it was actually quite incredible.

Most of the people in the room had no idea how monumental this event was...

And how one year ago, heck, practically one month ago, I could not have dreamed up this reality.

As Parker waved and walked enthusiastically, the hymn the congregation sang was strikingly appropriate for me-another unforgettable moment in my life. I sang my favorite Christmas hymn, which unfortunately does not exist in English.

"Il est né, le divin enfant!"

Parker waved, and walked, and turned, and did some more. He worked the crowd with his new found balance, cow outfit, and joy.

Of course he is not the Christ-child, but to me, he is truly divine. And I am so, so, so thankful for him, for his life, for his success, and all he is teaching us during this season.

The Christ child is the reason why we are here. I know that. It is the Plan of God that we come to earth to experience this thing we call life. And learn and grow every-single-day.

Who'd want to miss out on that?

We wish you all goodness, peace, joy, and warmth this holiday season. May you be surrounded by those you love, and those who love you..and may you, and I, better learn to love those not easily loved.

Or who are deaf or blind to the many beauties that surround us each and every day.

Merry, Merry Christmas!

Hallelujah!

I was sitting in the kitchen with Peej the other day & a song came on from my favorite album. It was a different rendition of Hallelujah, and I was overcome by the gratitude of the blessings we've had the past year.

So it goes to show that the only time I have to reflect on the many happenings in our lives is when the house is sleeping or quiet, (or mostly gone!). "C'est normal", they would say in french. Of course I can't think about how I am feeling when I am leading the troops 7/7 or seven days a week. It's only when all homework is done, spellings have been quizzed, "poesies" have been "acquis", and everyone is bathed, fed, and sleeping that I have a moment to chat with John, and think about how the world is spinning around us, or with us. And how we are actually doing in that world.

And then I heard about the Hallelujah flash concert in Macy's in Philadelphia, USA a few weeks ago. It was fitting for me this week, and you can check it out here--Just beautiful! http://www.youtube.com/watch?v=wp_RHnQ-jgU

We hosted a potluck Thanksgiving at our place last weekend, and I have cooked enough pumpkin cookies to feed 3 little bilingual armies in Abby, Hannah, and Axelle's english classes this week as I did Thanksgiving presentations with some dear mommy-friends by my side.

So we've been oh-so-busy, but thankful.

And I couldn't help but think where we were at last year at this time,

and how I was feeling,

and how far we have come.

Last year at the Thanksgiving dinner table at our dear friends' (The Lees) home someone asked the typical traditional Thanksgiving question: "What are you most thankful for this past year?" And I practically burst into tears. The death/life veil was still too close to talk about for me and John & Peej....and he had been having alot of seizures.

But THIS YEAR I FELT NOTHING BUT GRATITUDE! And lots of it.

Hallelujah!

I was praising God all week for Parker's progress, and the fact that he's been walking for a few weeks now...and getting better at it.

Every few days I witness a few tears from another dear friend who is surprised by his upright forward motion, and all I can do is smile...

and say thank you...

So, thank you.

Thank you to all of you who continue to pray for Parker. I know the prayers are working. I KNOW IT. I feel it. I know that God hears & answers prayers. So keep them coming, cus we've still got ALOT more work to do.

Thank you, dear, dear Lord for continuing to bless Parker. Thank you that he was not hurt by the motorcycle that hit his stroller this week! Seriously. Another story...for another time.

But Hallelujah we are farther away from that life/death veil, and all of the frailties I felt there. I am so happy & proud of Parker & his progress, and he's proud of himself too. He loves his little deaf school, and he's got ALOT to be thankful for this week.

Praise him. Praise Him. Hallelujah , and Happy Thanksgiving!

Walk My World

Parker had very solid walk weeks and we feel we are on the cusp of overcoming one piece of uncertainty.

On Monday morning, as usual, I fixed the cochlear implant to Parker's head before lifting him out of the crib and onto the ground beside me. While leaving him propped up beside the crib for balance I reached for a diaper. Parker casually walked over to his toy car garage some 10 ft away, put his hand on top of it to steady himself and then stood there playing with his cars like a normal boy. I sat 10 ft away in utter happiness.

The day before, Sunday, while at our friend Richard Shurtleffs house for dinner, we were having Parker walk between Renee and I, bribing him to go to someone else holding his pacifier. At first he hesitated, looking for us to hold his hand and scaling along side the couch. Then the other children thought we were playing a game and started running between the different adults and the fireplace laughing. Parker, shirking his inhibition, forgetting that he was handicapped, joined in with the other children laughing too.

Our apartment has a narrow hallway that is probably 75 ft long with red carpetting. Saturday Parker walked up and down it several times-- arms stretched out to the sides and pushing off or steadying himself every so often-- but walking unassisted nonetheless.

The French have an expression "ca y est"; --roughly translated as there it is -- but connotes a sense of that's now done. It feels like, this week for walking, ca y est.

He isn't graceful, he has a certain aspect of drunken sailor in his walk, but he is upright and deliberate.

After his first walking week we left for 10 days travelling in the UK and he continued his progression, getting continually better at avoiding obstacles and re-balancing after a sister brush-by. In one apartment we stayed in he was begging for the drink I had in my hands which I finally gave him. He held it in one hand, walked 15ft across the entry way and through the front room to the coffee table where he placed his free hand for balance, then proceded to down the drink.

At the swimming pool he would walk on the wet cement, slip a bit but regain control and continue his progression to the water.

We have even seen him walk across the room, stop midway and pick something off the ground, and continue walking.

He still prefers to hold my hand and when he gets tired he wants to be held. He also tends to crawl when he doesn't have a fixed reference point, but still, everyday you will see him just walking by randomly, or decide for no reason to leave the couch and walk to the table.

The girls all walked at between 10 and 13 months. Parker has taken at least twice that and it may be some time before he totally masters it and uses it as his main method of transportation-- still, one worry seems to have been lifted as one more fear seems to have disappeared.

Optimum Turbulence Penetration Speed

OK,

its fancy-talk for "slow & steady wins the race", right? In the middle of a storm, do you do better to speed up & get soaked (like I generally do?), or slow down, take cover a few minutes, and get your rain gear on before pressing forward?

General Conference has come & gone again. It's what happens twice a year in our church, in the Fall and in the Spring, and it's where we "come and listen to a prophet's voice." Yes, we believe in a living prophet on the earth today, and apostles, too, same as those that existed in the times of Christ. So when they talk in a turbulent world, and give advice, we want to be there, we want to listen, we want to take heed and implement their teachings. I'm trying to do just that.

I have had favorite apostles through the years. They are all wise and learned. Some are heart surgeons, some are retired university deans, some could be used car salesmen for all I know, but they all have loads of experience. Outside of their day jobs, I mean. They all have spiritual wisdom to share. I try not to have favorites, but I've concluded after this conference, that I have a new favorite apostle. His name is Dieter Uchtdorf. He was raised in post-WWII Germany. His childhood is no doubt what made him who he is today. And I've just come to really like everything he has to say. Its not to say that I don't like what the other apostles are saying, but his talks seem to reach me more than the others'. So this Conference (last weekend) he spoke of a term: "Optimum Turbulence Penetration Speed"... What does it mean? It's obviously a technical term, but he spoke of it in reference to airplanes in turbulent flight, should they speed up, or slow down? Or in trees growing in a stormy climate. Did you know that a tree actually slows down its' growth in bad weather, to focus its' energies on staying alive? It makes sense. It's contrary to my way of working, though. I just tend to plow through things to get them over with. John does the same. I observed my dad doing likewise as I was growing up, but I see that he is wiser now with age. You can read President Uchtdorf's talk here if you'd like to see him and love what he has to say, too: http://new.lds.org/general-conference/2010/10/of-things-that-matter-most?lang=eng

The past few weeks Parker has continued to make progress. We saw the neurologist Friday. I was NOT AT ALL looking forward to it. She is usually depressing, and I was expecting more "bad" news after meeting with her, BUT she basically told me that Parker seems "much better" since she last saw him in April. And that she didn't need to see us again for another year. That he was really in the rehabilitative phase now, and there isn't much she can do for him at this point. It all struck me as very, very, very bizarre. Though I feel the wheel is slowing down, I didn't really expect a "professional" to tell me such. I expected them to tell me we've got to keep plugging along & work this & that because clearly he's not well, even though he's clearly not sick anymore....

What's the date? I've got to take note of this...A bit over 19 months since the Dreaded Meningitis Day. But who's counting, right?

Have we picked up all of the pieces? Have we crossed all our t's and dotted all of our i's? Have we done everything imperative in the critical phase to set him on his way & see how he does? To be the most successful he can be?

Apparently "we" have.

And now" we" pass the torch to the next group. We change courses from the critical phase to the rehab phase. Its VERY bizarre, actually. (Did I already say that?) After all this crying & fussing & pleading & running from one appointment to the next, have we actually settled into a different learning curve? Different phase? I guess so, I guess its official.

Maybe you have all already passed the torch in your assessment of us---to the rehab phase some time ago. Maybe after Peej was released from the hospital the first time you thought he was "ok". But not me. Not me. It's been a long road. A very long, hard road for me.

I can finally meet new people in the park & tell them what happened to Parker when they look inquisitively at his ear apparatus & wonder why he's so big & not walking that he had meningitis, without tears in my eyes (usually). Or without wondering if I need to protect myself from sharing this sacred knowledge for fear that it will not be adequately appreciated, the weight & the struggles on my shoulders and in my arms these past many, many months. I can finally ask Dr L when exactly we can expect, if ever, we can expect Parker to walk on his own, since she has more experience than us with kids with deafness and vestibular dysfunction. Even the neurologist was asking me what his chances are of walking since she hasn't got alot of experience with kids with this problem....

And Dr L gave me lots of hope. She said, "Oh, he'll walk." I responded, "You mean, really walk, right, by himself, not holding my hand like he's doing now, or walking with a walker, right?" She said, "My experience is yes. Sometimes it takes a very long time, but it usually always happens."

The occupational therapist from CEOP explained it to me a few weeks ago that Parker likely feels like he's always on a moving boat. You can imagine why he often looks like a drunken sailor in his gait.

But President Uchtdorf gave me some insight now as to how to direct this path. What is Parker's "Optimum Turbulence Penetration Speed?" Is he through the storm, so now we move faster than we have been in previous months? Will he "grow" more & better & quicker now that the turbulent part of the storm has officially past? Or do we now actually take the time to slow down, and perhaps learn rather than trying to barrel through the "turbulence"? I've been afraid we were not working Parker hard enough or smart enough since "la rentree", since he seems to have many fewer appointments these days. I'm terrified his neurons will not form as they should, his brain lesions will take ground (in their bad form) & not make any more room for new brain waves, new growth, new achievements. Or worse, even--they will decide to start seizing again.

Yes, he is stimulated, of course he is, look who he's surrounded by, but IS HE STIMULATED CORRECTLY and EFFICIENTLY? That is my question now.

We have loads of great news this week:

PJ is starting at CEOP, the deaf school in the 15th in a few weeks' time. Two mornings per week at first, with mama. And a taxi will come and pick us up & drop us off. (Paid for by "Douce France", ie. I'm sure our tax euros contributed to this somehow).
PJ is leaving walls & walking between them, taking more unassisted steps. He walked about 30 steps while pushing a baby doll stroller this week, and I was not even pretending to be holding onto him.
The girls screamed & ran & jumped in our salon for a good 30 minutes last night playing "Monkey in the MIddle" (John taught them!)..and Parker was running & jumping & screaming along with them. He even tried to tackle Hannah one time. I was in heaven watching these kids & wondering how much our neighbors must truly despise us.
PJ is saying "out" all the time he is strapped into a stroller or high chair (its, great, right? albeit grating)
He also says "Ow" when he gets hurt.
We got new parts for his cochlear implant yesterday and it seems to be helping the problems we've been having the past several weeks.
The neurologist doesn't want to see him again for a year.
His attention span seems to be increasing.
He smiles and laughs his way through everything, good and bad.

Great news is he is still here, still fighting, and we are right beside him, preparing our Victory Tunnel for his walking tour when he decides to do it. And we're still trying to best help him figure out his "Optimum Turbulence Penetration Speed" to walk, run, talk, and hear like any other typical boy his age. He's gonna get it. It just may take him awhile more, but he'll get it. The turbulence is decreasing, his pitching boat is steadying.

Count Your Blessings

In church, I grew up sitting next to my mom in sacrament meeting who always cried during a particular hymn. When I was small I didn't understand why.

Now I get it.

I had a rare opportunity to be home in the middle of the day today with just Parker. The weather has turned gray & cold and autumn has arrived. Hannah even had the word "l'automne" as one of her spelling words today.

The girls ate lunch at school for the first time this year. Axelle was very excited by this prospect, and as such, was dressed with teeth and hair brushed by 7:15 this morning.

Abby was happy, and looking smart in her new winter coat.

Penelope was visibly pleased again to be playing at the garderie with her friend, "Belle".

After they were all dropped off, and Parker stopped crying (not being able to stay & play with Penel, or the other cool-looking toys or french kids), we walked half way back home to the physical therapist's office. He did great, but she worked him hard. She says we've just got to work on his balance so he can walk, walk, walk.

After that,we came home. I cleaned up from the morning rush and started cooking. I love the Fall, I love wassail and pumpkin cookies and all of the smells associated with Fall, ....and my home when I am cooking.

I started thinking about how satisfying it is to cook for my family, and prepare their clothes, make their beds after they leave for a long day, do homework with them, practice piano with them...dress them in their ballet clothes, etc, etc, etc.

And how wonderful it is to be on "this side" of the spinning vortex of chaos I feel our family has lived in since the twins were born, and especially since Parker's illness.

I can feel the momentum slowing down. I feel like the ride is about to come to a complete stop...I can feel that sometimes we are sucked back into that vortex, or perhaps maybe a smaller one... one or two or sometimes all of us, where we feel stressed, sad, scared, anxious, sick, even...

but today I think I may have actually gotten off the ride. With Parker.

We slowed down enough to step off the spinning vortex of chaos...and the fear, and trembling and sadness, and betrayal and wonder, and anger and filth and mud and everything else associated with the chaotic part of that vortex.

And It's good here. Great, even, albeit it, teary.

I was chopping and singing to Parker as he was seated in his high chair in the kitchen. I started singing, "Count your blessings, name them one by one. Count your blessings see what God has done. Count your blessings, name them one by one. And it will surprise you what the Lord has done."

Of course I was humming it for minutes before I started singing it, just fine.

But as I opened my mouth to sing, the tears started flowing.

"Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear"
Count your many blessings & your doubts will fly,
And you will be singing as the days go by.

Count your blessings name them one by one.

Count your blessings, see what God has done.

Count your many blessings, NAME THEM ONE-BY-ONE."

It's easy to get caught up in the hard things and negative things in life, thinking that it's all that matters, it's all you can see when you feel sorry for yourself....but I am actually very surprised how blessed I am every single time I start counting my blessings.

Then I feel ashamed, and rightly so, for feeling hurt or angry or sad.

I am richly blessed. Parker is richly blessed.
Parker has richly blessed us.

Here are Parker's blessings this week:

He is getting over his awful head cold/ear infection, thanks to antibiotics from a few angles (mouth & ear).
He is learning how to catch a ball while standing up, leaning against a wall or couch.
He is taking 5-6 steps, mostly to me, or back to the couch.
His EEG was not perfect, but MUCH better than June's.
He is increasing his anti-epileptics as the blood levels were low, hoping to fine-tune the EEG.
He is saying a smattering of words:
"Coucou" (the french equivalent to "peek-a-boo")
Hi/Bye (not always with a B)
Thank you (sounds like "gank-ooh")
Merci (sounds like 'meh-key')
Cookie ("cah-key")
Ice Cream (sounds like "eye keem")
Drink (sounds more like "ink")
Cheese (when you pull out the camera, no less, and it sounds like "schleeee")
Outside (sounds like oww-sigh)

He dances/sways when we go to music/singing class, and says "eee-ii-oooh".
He purses his lips & says "mmmmmuah" when I ask for a kiss.
He likes to play the piano and says "grave" with his hand low when we play low notes on the keyboard.
When I pick him up, he puts his arms & legs around me for support, his muscle tone is getting significantly better.
He also pats my back when I hold him, ok, that is my blessing, but I'm putting it in. I love it.
He started saying "brrrrrm" today with the sign for car when we were playing cars. (I've never played cars before with all these girls, I actually quite like it).
He loves balls & cars, like a real boy should.
The physical therapist, and occupational therapist both said this week, "He's like a different boy. He is changing alot right now."

I'm impatient, but am looking to count my blessings this Fall and keep on keepin' on. In or out of the vortex, I have alot of counting to do. And thanks to my mom's genetics, some crying too.


This is my mom in the video with a sampling of our daily chaos, at the Wild Animal Park in San Diego this summer. She tolerates our chaos well, and maybe even enjoys it! She's signing the ASL sign for Elephant. She & Penelope manage to do it well. Abby was explaining her stamp map to me. Good thing I got it on video. Hannah just got home and asked me how come she is not in the video.

Ode to Barb

EVERYONE NEEDS AN AUNT LIKE MINE.
This is her with PJ in Versailles the week he had his cochlear implant surgery. It was May 2009.

Her name is Barbara, but she goes by Barb. You like her already, don't you? Barb is such a likeable-type name.

She and I have similar tastes in fabrics and candles and pictures, and we have similar thoughts on cherishing babies and what seems to me alot of other things. She's just a really good mom and aunt, and sweet & loving & I've never seen her lose her temper & I remember distinctly seeing her children jumping all over her when they were small, and she never yelled at them to stop. She has spent her whole life serving her family. She loves them implicitly. Like my mother, she has been a perfect role model for me as a human being in society, a friend, a mother, and wife.

Plus she's really good at shopping. I mean to say not that she spends alot of money, but she REALLY cares about buying the RIGHT gift, is thoughtful and (almost!) always right on the mark. She ALSO spends hours and hours making beautiful keepsakes with photos and designs AND she just knows what people like. That is a gift in itself.

When I was little, I remember she sent the most beautiful teeny jewelery box to me for my 5th birthday. She claims she didn't know that there were pierced earrings as part of the design, but I secretly forever loved her for it, because somehow in my 5 year old persuasion, I convinced my mom to pierce my ears that week...

When I was 14 she gave me a jean jacket with the funkiest, coolest paint all over it, no doubt made by a budding new artist. I still smile when I see it, even though by now, I may have outgrown the chili pepper and cow designs on it.

She bought my whole family telephones one year for Christmas. We all had very unique & fun & interesting styles. It was perfect. My brother & I were teens, and we each HAD TO HAVE our own phone in our own room! But she usually did not buy the same gift for everyone.

Her gift is always my favorite to open. I usually save it for the last at Christmastime. When I was younger & the gifts would arrive in the mail, I would open it weeks before Christmas, look at it, love it, sometimes try it on, then wrap it back up so no one knew what I had done! No one except my mom, cuz she did the same thing with me....us,giggling all the way through.

When Axelle was about 2, she asked John what he'd like for his birthday. He said, "NO more diapers". Wouldn't you know, the next thing we knew, she sent three very special, very motivating books on "potty time" for our little one (and us!).

When Parker was sick, she had recently had hip surgery, then flew out to be with us and help with the girls while PJ had his cochlear implant surgery. She was no doubt hurting and uncomfortable, but never said a word, she lovingly & patiently spoonfed him his medicines in his little 10 month-old mouth, smiling & talking & loving all the way through.

And one of her favorite things to do (or she's really good at faking!) is read to little children. MY little children. She will happily sit for hours and read & talk about things & show them pictures.

This summer, she came to California for my dad's birthday where I showed her Parker's little backpack that keeps his battery pack for his implant, that it had been stretched & torn & tied up & hand sewn (poorly) again & again by me. Wouldn't you know that within days of her departure, we had a package in the mail from her. With not only one new backpack, but 2! In adorable fabrics (unlike the lame one we had before), as well as 2 collared shirts (I always put him in collared shirts to clip his implant on) with 2 very cool pockets already integrated into the backside. She knows what kind of fabrics I would choose, she knows what kind of shirts I would buy for my son. She made them quickly & efficiently with love.

She calls them "PJ's POCKETS". I love them. I love her.

Everyone needs an aunt like her. Or a GREAT AUNT like her.
Thank you, Barb. I love you!

Thank you for loving my kids, for loving my husband, for teaching me and showing me how to love by your example!

Back to Reality

We transitioned into Parisian life without too many hiccups this week. The girls started school and Penelope LOVES going to the garderie.

Parker was underscheduled to me, and it was refreshing (actually focusing in the girls), yet unsettling (seemingly inefficient).
He had only 3 appointments, and lots of free time to practice his walking and throwing balls. So here's the low-down:

GARCHES:
Appointment scheduled for EEG Friday, the 17th. We'll see how that goes. It could be my least favorite thing in the world (but I had a root canal this summer and THAT is my new least favorite torture). We'll meet with our beloved Dr Q afterwards to show off PJ's new abilities since last seen in June.

NEURO:
We were scheduled to see Dr K at Necker the day BEFORE we got back from vacation (opps!). Luckily she is taking us on her lunch hour (she always does that for us) so we can get into see her after the next EEG reports. She is always a downer, so I'm not that looking forward to it.

ORL:(Oto-Rhino-Laryngology or EARS)
I woke up this morning to Parker already wearing his cochlear implant, but in a new fashion. John had placed it around his ear (as it should be worn), and I actually didn't hate it. This is good news. Great news, actually. It was too big and too mechanical on his little head before. Now I'm just wondering if we should grow out his hair to cover that chic flashing red light. His CI (cochlear implant) has been short-circuiting all summer and I have been exchanging emails with customer service to see if we can rectify the problem. We have also (again) lost the habit of wearing his hearing aid (HA) on his non-implanted ear since he tends to get ear infections on that side. It also makes alot of swamp noises when airflow is obstructed around it (by carseat, stroller, or just him putting his head up against a couch, or the floor). It also frequently ends up in PJ's mouth or thrown into a toybox and the internal part often goes missing, so sometimes we opt out of wearing it (not good patients, but doing our best). This summer I got brave and just used a little bit of super glue to attach the pieces and it has worked like a charm, until after church today when I saw Parker chewing on something in his carseat. It was his hearing aid. Humph.

SPEECH THERAPY:
For the moment, PJ will do one session/week at home organized through the deaf school CEOP. He did surprisingly well Friday. He was quiet, concentrated, and even repeated sounds like "grave" with a low hand motion while playing some low notes on the piano. In english he is now consistently saying "HI" (even sometimes without any hearing aids first thing in the morning), and "OUT" when he wants to get out of the high chair. When I put him in the stroller he does the sign and says, "OUTSIDE". We need to speak more to him, and give him more time to communicate back. When the girls are around, there is alot of background noise & he seems to go more quiet.

PHYSICAL THERAPY:
The physical therapist saw Parker once this week and was very pleased by the increased strength in his back muscles. She said now she can start doing different exercises regarding that. She said she notes no change in his leg strength, and that swimming would be great for him. We will plan on swimming once/week with him to see if we can make his legs stronger at home.

BALANCE:
He seems to be getting more confident to let go of objects & take a few steps towards us. It's scary since he is usually flailing arms & legs and takes no more than 5-10 steps before crashing into our arms or the sofa or whatever. He grabs our hands & tries to walk, pushing a baby stroller or walker or kicking a ball nearly all day long. He loves it.

NEUROSURGERY:
No plans to meet with them for 6 months when we'll do a control CT scan to check the shunt. I'm just always putting that on the back burner thinking if he has serious neuro changes or vomiting, we can do another shunt repair. Its seems frighteningly black and white at this point, whereas neuro or speech/language seems alot more ambiguous and difficult to assess or project.

DEAF SCHOOL:
Apparently there is another little boy Parker's age with the same vestibular problems, as well as 2 little girls in the same age range. Since there are two, they may be willing to make their own class with special seats equipped to keep these balance-challenged boys from falling while learning. They are expecting that the girls are more advanced at the moment, and will likely keep them in a separate class from the boys with the hopes that at some time during this school year, they may be able to combine these 4 little ones into one class. I have to admit, I cried a little when they told me over the phone. I was not expecting this "a la rentrée" (beginning of the school year). They will even arrange for transportation for Parker to and from school eventually.

La rentrée in Paris is a rebirth of sorts. I love to see the cheese shops and boulangeries reopening after summer break. I love to feel the excitement in the air of the children in their new schools and classes. Everyone is happier and nicer, still tanned with a spring in their steps. I like to think of la rentrée as a new start and a new chance. So, here we go again! Back to reality. The rat race is back on. Wish us luck.

Everything Will Be OK

No Storms=No Rainbows

Last year when we went to Kauai (Thank you John & Barb! I could die very happily in your Kauai home), every day for weeks I remember seeing rainbows. We saw alot of them.

In Kauai, it rains alot. Maybe even daily, sometimes multiple times per day. But the rain usually doesn't last long. Often you see surfers just sitting in the rain on their longboards, taking a moment alone at sea, with their heads down. Others just chat with friends, while rain trickles down their faces. They are confident the storm will pass. They have a surety us non-locals do not possess. They know the storm will pass. Usually it is quickly. Sometimes it is just a drizzle, sometimes it's a downpour, but it passes. They know that soon they will be paddling or riding or kayaking again in the sun. They just have to wait out the storm...and be patient.


Last year we were sitting in a restaurant in Kauai, our five chickens amongst us, our heads still spinning from the previous Paris Winter, and God's Will thrown onto us...and I noticed some thick-skinned, old, smiling locals near us. One wore a shirt that simply read: "No storms, No Rainbows".


It spoke to me: the grown girl who passed through a wicked storm, who as a child drew every picture with a rainbow for years. I remember wishing on about my 7th birthday for pink hair and rainbow eyes. I loved rainbows, I still do. Now maybe for different reasons. But last year there were rainbows cheering us along each storm we passed through. This year I only saw one.


It was glorious and spanned the entire bay in front of us. We thought ourselves lucky to spot it, at 6 am our first morning after arriving. As with most rainbows, it didn't last long enough.


So with two months away from our crazy Paris schedule, I've had alot more time to reflect.

And all I can think of is: "What have ye learned from this?" What do I take from this? Any more storms ahead for us? Peej? Or just very few rainbows on the horizon, and lots of overcast, gray skies?

It's a reflective priviledge. That's the reward after the storm. It's God's way of telling you He's still there, still mindful of you.



It's bizarre to nearly completely detach our tethers to Paris, fly half way around the planet, with little or no talk of neurologists, CT scans, seizures, vestibules, he's not walking yet, physical therapy, deaf schools..and let the wind take our parachute far, far, far away from that place...and the stress and running it entails. And land in safety for awhile. And laugh and play and pretend like everything is ok, and grab onto the hope that "Everything Will Be OK"....someday, someday.

As the girls grow older, each time they fall and skin a knee, or someone says something hurtful, I realize all they really want is for us to hold them for as long as they need, and for us to tell them, "Everything will be ok."

The older I get the more I realize it's all I want, too. I want my husband to wrap me in his big, strong arms and tell me everything will be ok. I want him to wipe away my tears, fears, and take away my pain.

But he doesn't. And he won't. Maybe it's because he is not sure everything will be ok anymore. And I hate it.

When?
When will it be made right again?

I'm not asking "Why?" anymore, I feel I know the answer to that question.

Now I'm asking "When?"

Hannah about a week ago asked with very pure intent, "When will it be, Mama?"...I knew before I asked for clarification what she was getting at as she eyed Parker with her knowing eyes. I could feel a loving husband and father's gaze on both of us as I responded, "When will WHAT be, Hannah?"

"WHEN WILL PARKER BE HEALED? WHEN WILL HE HEAR AGAIN?"

I couldn't respond. I turned my head, but not before a very mature 6 yr old saw tears in my eyes. I wept. At her question. At her perfect faith. At her love, naivete.

At the fact that she sees my hope to carry on, cheer him on. Maybe she sees it, feels it, hears it in me. For that, I am grateful. Maybe that is why she fully expects him to get "better" and "be healed" whereas I feel most people are just assuming he won't.

John gracefully stepped in to take me out of that spotlight.

His response was simple and beautiful, "When Jesus comes again." (of course)

Then the girls said almost in unison, "Well...when is that?!"

We don't know, now, do we?

It's funny, the faith of a child, isn't it?
Axelle has heard us pray and been asked to pray for very specific things for Parker since she was 4 years old. Rather than echo our prayers to "PLEASE bless Parker to walk, talk, run, and hear", she starts her prayer with "THANK YOU that Parker can walk, talk, run and hear."

We don't correct her. She is right. (But not when we started 18 months ago...) He is walking (with a walker, or holding our hands), talking (3 or 4 important words like "cookie" and "ice cream"), running (when he gets really excited still while holding your hand, and hear (it is very clear that he hears with his implant, what his brain interprets those sounds to be is yet to be determined by consistent language).

Beginning of summer left us in a panic with bad EEG news, and we packed up our bags headed for 8 weeks of familial bliss mixed with some good 'ol Americana. We did lots of swimming, saw tons of cousins, Grandma, Grandpa, Nana, Grandad (turned 70!), Aunts, Uncles, and dear friends who caught our parachute, and took us in. A great photo shoot later (thanks, Sandi), a few choice visits to Jamba Juice and Target, a very real answer to sincere prayer, one very-way-too-near-drowning, and we pack up our chute for the next jump back to Paris.

What have I learned these past months?

That God hears and answers prayers
That miracles still happen everyday
That even when we think He is not, God is very mindful of us
That sometimes we must learn that we are not calling the shots here in life
That loving friends and family can likely help you get through anything
That in order to understand heavenly things, we have to pass through earthly trials
That everyone's trials are different, but each one is real, significant, and difficult for them
That I can't receive revelation when I am "noisy" inside or outside
That I go crazy if I don't sleep enough
That life is not what I expected it to be
That stress ages you
That to seek the Spirit as your companion, you must pray always, AND read your scriptures-every single day
That having a strong support group is alot, but your burdens are often your very own to carry...
That life is for learning hard lessons as well as smelling the flowers along the way
That the Lord works in mysterious ways, often through others to accomplish His tasks
That some things in life you've got to do alone, even if others offer to help. Things like prayer, pleading, and finding your own salvation

What have ye learned?
When?
When do you think the next storm will come? Are you chinning up? Cursing? Or dancing in the rain? Do you see a rainbow?

Everything Will Be OK. I still believe that. Maybe it's a different ok than I expected, but When?

Angels Swim Among Us, He Hears and Answers Prayers

We have been at my parents' home in Southern California for 2 weeks now and it has taken me this long to come to terms with what happened here the first morning we arrived:

We arrived late on a Sunday night after driving all day long from Utah. We put the kids to bed, and John (after driving many hours) fell exhausted to bed, too, about midnight.

At precisely 6:20 the next morning, I awoke to repeated, panicked, unrecognizable screams. John and I slept in a room facing the study where we put the twins to sleep. Their door was shut. The screams were not coming from that direction. The girls were fast asleep upstairs. The screams did not seem to be coming from that end of the house, either.

The neighbors have two girls, and I chalked it up to being them...but the screams were panicked, and continued.

This is what got me out of bed. The pitch and panic of these screams for help.

I wandered into the kitchen where I met my mother, who was also awakened by the terrifying, continued screams. She reported to me that the girls were sound asleep upstairs, I indicated to her that the screams were not coming from the twin's room, either.

Puzzled, we discussed the possibility of it being the neighbors.. still unsettled, unsatisfied.

Then I saw something out of the corner of my eye through the dining room window...

It was a child, floating in the pool.

Not only was it a child, but it was MY child, my Parker, screaming, thank God, face up, floating on his back in the pool.

Parker screamed for probably 3-5 minutes by the time it woke me, I got out of bed, traversed the length of the house to the kitchen, wondered what was going on with my mom before we finally found him.

My mother and I, screaming, unable to move quickly enough, ran to rescue him.

What we saw was Parker floating on his back. His limbs were not flailing or thrashing, he was not bobbing in & out of the water. His body was perfectly calm & nearly still, but he was screaming. A panicked, unrecognizable, repeated call for help.

My boy does not know how to swim. He does not know how to float. Not many 2 year olds do. But what I had noticed the week previous was that with Parker's balance issues, he actually tended to end up on his face while in the water much more frequently than other children. The life jackets designed to force children onto their backs actually forced Parker to his front. This means that not only does Parker require constant supervision in the water, it means that we are physically holding part of him every time he is in the water.

My two year old, unwalking son, who somehow got out of his crib, went through the garage, exited a second door from the garage, headed down the side yard and discovered the pool, and decided to get in. At 6 in the morning. We haven't been to this house for a year's time. There is no way Parker remembered there was an uncovered pool back there, not to mention how to navigate his way there, through a dark garage and into dark waters.

He was cold, fatigued, lied in my arms, then John's for an hour before he warmed and livened up.

Had he not screamed (this deaf boy who without his cochlear implant is mute), we would not have found him for at least an hour when the girls woke up, asking if they could swim, or two, when Penelope woke up and we would have seen that Parker's crib was empty...

The night before, I knelt to pray. It was 2 am. I prayed earnestly for more inspiration regarding Parker and his care. I prayed that something significant would happen the next day, to signify to me that the Lord was still mindful of me. Me, his aching daughter, and my baby. His baby. Our sick, growing baby.

I don't know what to think beyond the fact that He heard and answered my prayers a little too quickly & literally for me. That there are clearly angels watching over us, over this boy, and I am so infinitely indebted to them. That miracles happen every day. That we have already seen miracles with this boy, and that I fully expect to see more. That a loving Father not only hears prayers, aching prayers of a mother with a growing boy, but that He answers them, too.

If he has nine lives, he's already used up two of them.

Living Happily Ever After

http://www.sandigentryphotography.com/blog/le-petit-prince/

We have been in the USA for 19 days now to celebrate our heritage this summer, and be with much missed & beloved family.

Today is my birthday. Me & John & my sweet brother & sister-in-law did a triathlon yesterday. I did not train at all. I haven't exercised for months, maybe even years. I haven't done much more than breathe for many months, not to mention think of anyone or anything else besides Parker, his health, or my other babies, or husband. Or putting one foot in front of the other.

But this birthday is sort of a big one. I feel old, tired, aged, wrinkled from the winds & storms of the past 17 months. But I am still standing, and I am breathing, and I am strong today and happy. I am standing taller than I was 17 months ago, breathing more, deeper, better. I am standing stronger today than I was yesterday. Sometimes I am taken back by my breathlessness, more moments take my breath away, more thoughts take me swiftly to uneven, panicked breath. But it's good. I mean really good. There were months where I never thought I would feel joy again, I never thought I could take on this trial. For months I just never thought...I was too busy doing. Doing all of the things that a mother of 5 in a foreign country with a husband who is away alot, does.

So upon reflection of what this day means to me, as a woman, a mother, a daughter, a friend doing a triathalon on a whim was fantasy. And I did it. I of course didn't win, and we had to persuade alot of sisters & cousins & Grandma to look after our kids for a few hours so we could do this swim, bike, run together. And we did it. I wanted to do it before I turned 36. I wanted to celebrate my "youth" before my crows feet tatooed their lines alongside my sometimes crying, sometimes smiling eyes.

I swam, biked, crashed, and ran. I finished the race. I felt weak and tired. The girls ran the last 500 meters with me, and crossed the finish line alongside me. There was a part during the race where I thought I could not go on, would not finish in time, then I started praying. My feet were numb, and had been for over an hour. I started thinking of Parker and him walking, and running. In my mind's eye, I saw me running alongside him one future day, and then I flew back to present to my lungs closing up, my eyes filled with tears, my pain present and real. Oh, I want this more than anything in this world...



We have a pillow in our bedroom in Paris that sits on our bookshelf that reads"Happily Ever After".

I had such a perfect, easy, lovely life and love before February 2009 and Paris Winter. This pillow to me symbolized the many happy times I anticipated having with my perfect life and perfect opportunities, loving husband, beautiful kids.

But over the past year and a half, this pillow was pushed aside, placed behind books in my bookshelf. I even remember finding it upside down, or backwards at times. This pillow slowly became a mockery of me & my perfect life. My small, insignificant, perfect life, for many many months.

In June we packed up our little Parisian home and came to the States for 2 months. I used this opportunity to clean out cupboards, de-bulk, simplify. And I ran across this pillow. For a fleeting moment I thought it was again mocking me, my past, my future. And I thought perhaps I should give it or throw it away.

But after that fleeting moment, I had a rush of a feeling that came over me. That we are in fact living the "Happily Ever After", now, again, here. I know that people look at us in parks, museums, walking along streams, and they don't see a typical family, or a typical boy. They see an extraordinary, atypical boy. Atypical because he has been on the receiving end of so much love and prayers, extraordinary because he saw death, and chose to return to life. And this life IS me, and John, and four, rowdy, loving sisters.

But these people say, "It must be difficult for you". And I just think, "You have no idea"...

Parker's "handicaps" will be "surdité" or "deaf" or "implanted" or "shunted" or "appareillé", "not walking", "epileptic"..but truthfully they are just labels that doctors or society has chosen for him. To me, he's just Peej with all of those temporary things. He's still small enough that people don't find it that strange that he crawls everywhere, or that he is often in my arms. But the time is fast-approaching where it will become grossly obvious that he should be walking and is not yet.

I thought he'd be walking by now.

He and his twin sister turned two a few weeks ago.

My next goal will be for him to be walking by 2 1/2. I truly think he will be walking by then. Just like I thought he'd be walking by his second birthday.

But if he's not, my next goal will be age 3.

I wonder if I will ever give up hope? I wonder if I will ever stop praying for Parker to be whole. I wonder if I will ever stop pleading with my God to bless my Parker to walk, talk, run, hear, have good balance, have no more brain lesions, or seizures. Or meds.

I wonder if I should?

If I do stop, will the Lord think I no longer desire those things?

Or will He assume that I have (finally again) submitted to His will?

What's right? Or better?

The longer we go and the more I realize that people will (and many already have) stop asking about Parker or including him in daily prayer, I realize it's just another story.

It cuts to my soul when people do not ask about him. When "people" no longer pray for him.

But it's our story. And that will never change. No matter what it brings, this story, I know that we've given it a good run, done all that was expected of us. And that's enough.


Before leaving France, we had emergency blood draws on Parker's meds and emergency EEGs to see how his brain was handling the re-introduced anticonvulsive medication. Dr Q said to me, "Don't even try to understand his brain." as we discussed the treatment plan for him following his last EEG. I was taken back, almost offended for a fleeting moment. Then she said, "The human brain is so complex, we just cannot understand it. There is so much to it that we simply do not understand."

God works in mysterious ways. Like brains, I should perhaps not even try to understand that.

Just try to live it, and enjoy it, happily ever after. Forever.

On my birthday I give thanks again. For my deaf, living, not walking boy, who signs and tries to say "hello", who says "uh-oh" very clearly everytime he drops something on the floor, and today I watched him sign "Jesus" as we sat in front of the Christus statue in Temple Square with lots & lots & lots of cousins, and aunts & uncles and Grandma and Grandpa. I give thanks for the deaf branch that meets in the same building as the Ward Mike & Katy go to, and to the sweet deaf man we "spoke" and signed to this afternoon. We learned the signs for "Paris" and "cool", among many other things. I thank my God for Parker's courage today. I know he is often courageous, but I don't often see it in his walking. John & I were seated in the back row of church with many squirmy, hungry, tired kids all over us. John had 2 children on his lap. I had one. Parker was standing holding onto the chair next to John, which was 2-3 down from where I was seated. As I was listening to the discourse, out of the corner of my eye, I saw Parker walking unattended, in a crazy loop. He was headed towards me in a roundabout way. We were shocked, as he never lets go of objects without our hands letting go first, or us pleading with him to come towards us. But this was a clearly unassisted, unsolicited mama-mission. He did awesome! We've also learned the sign for that while in the States this summer:)

And now we just press forward, and like Joshua says in Chapter 1, verse 9:

"Be strong and of good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."

I know that He is with us, He walks beside us, beside Parker. I know that when He makes us walk difficult paths to make us strong, He wants us to keep our courage, be unafraid. I heard many people during the triathalon say encouraging words to each other, to me along the way. But I heard more than anything else, "Just put one foot in front of the other!". It struck me as more poignant no doubt than perhaps others.

That's what I am doing today, and I pray with all of my soul that Parker can figure out what that means, that his balance can be restored, that his brain can figure out this process, that he will not be dismayed, or lose sight of that goal. And keep on living, and live with us happily ever after.

Turning 2 into the Summer

Parker is now 2 and is experiencing his second summer in the US.

A few days before leaving for the US, he had a blood test and an updated EEG to check whether the new anticonvulsive medication dosage levels were therapeutic and having the desired effect. Neither test was overly positive but he still does not seem to have had any repeat seizures.

He continues to work on finding his balance for walking and we continue to try and find new ways to stimulate that. Renee and I would walk him up and down the aisles of the airplane on the 11 hour flight to the US holding on to both hands then trying with just one. He did well with the walking part of this but constantly would stop to interact with some new neighbor or try and reach out for a cup or candy wrapper left on the floor.

We also received as a birthday gift from dear friends in Paris, a new device which is somewhat of a jump suit which has two straps to hold from above; almost like a puppetteer managing a marionette. When PJ is in it he feels that he has complete autonomy but you can support and direct as needed. Yesterday was the first day I had a chance to use this with him and for several steps he would walk with no support and my heart would leap as I thought "He's got it!". Then he would crumple towards the ground into a crawling position or veer to the left to try and pick up a cigarette butt or a flower. Renee said that he was doing better when we put a ball in front of him and he kicks it along to keep his concentration.

This week Renee has taken to a long piece of fabric passed under his arms, around his chest, and twisted behind his back. This allows for less aching backs while accompanying Parker on his walks, and seems to be equally beneficial for him.

We are also continuing to do some free walking between two people. I haven't seen significant progress here as he is still steady enough to make a few steps and then crashes to the ground or into the arms of the other person. He does seem to be doing better at the crashing as he is managing his fall with a little less brutality than the previous face-first dive to the ground. He now seems to bend his knees some and braces his fall with his hands. He almost always veers to the right when walking and when falling. He also is doing better about who he will do this exercise with. Previously it could only be between mom and dad and even sometimes he was not keen on leaving mom to go to dad. Yesterday he was going between Hannah and I and each time he would arrive at either of our arms he would turn around with a large toothy grin and give himself a well-deserved applause. Penel has identified this as an interesting and fun game as well and when Renee and I start to do this with Parker, she will sit on one of our knees and wait for her turn and then mimic the same motions as Parker including the falling into our arms and clapping.

His hearing is also progressing slowly. We have been better about using the traditional hearing aid for his left ear and he has been better about not pulling it out. just prior to leaving France, Renee visited Anne Keroudin, the audio prosthesis person. They tested the implant to make sure it was functioning correctly but also did an audio test with just the hearing aid on and he responded to some sound multiple times which Madame Keroudin took as a clear indication that there was effective stimulation to his left auditory nerve as well.

His implant continues to fulfill it's purpose when it is functioning properly. Perhaps a two year old puts a bit more wear and tear on the device but we seem to have recurrent problems making sure it is on. There are several sources of potential issues as there is the battery pack, the processor, two different cables, the external magnet and then, potentially, the implant itself which is under his skin and attached to his skull. This week Renee could not get it to turn on at all, and so Parker sat deaf and quiet for two days while I was travelling. I had picked up some spare parts while back in France and on Saturday morning I hooked him up with the newly re-functioning prosthesis. I was a bit concerned that it would be a shock to his system after so much time gone from the hearing world, but I started it out on the lowest setting and as soon as it made contact with his head, he started smiling. His sisters were there with me saying his name and smiling. And he started to laugh, deep from his belly. Renee cried softly in the next room, after days of intense prayer.

Peej also met with Annie Dumont, the speech therapist in France who pioneered working with profoundly deaf children. We had been recommended to her by several people as the expert on which school we should have him attend. We had also been getting some mixed messages concerning whether or not it made sense for us to continue to raise Parker in a bilingual environment; some suggesting our best option was to move to an English speaking country and others suggesting that we should only speak French in the home. Madame Dumont was very impressed with Parker's progress and said she was surprised at how he did compared to what she saw in the reports. She also told us the richness is his voice is due to the English we used in the home and that we should definitely not abandon that. Additionally, she saw no reason that we should abandon French either as it gave him an exposure to a wide spectrum of sounds which was more stimulating than a monolingual environment would provide. She also unwaveringly validated our choice of CEOP as a school, saying the other was not the appropriate environment for Parker to be in.

The principal reason for coming to the US this summer is to meet up with family and friends. As a child my most vivid memories are around summers spent at my maternal grandmothers house in Salt Lake City with my 18 first cousins from New York, Kansas and Utah or with my dad's sister Jackie and her five children on their farm in Layton, UT. I wanted to capture a part of that for our children so we planned on spending 3 weeks in Utah starting with Independence day weekend and ending with Pioneer day. If all goes to plan, we anticipate that all five of my siblings, all of their spouses and their 15 offspring plus my parents will be together for a couple of days around July 24th.

It has been interesting to see the interaction so far that the children have had in this vaguely familiar environment. The almost constant sunshine and blue skies, large houses and expansive stretches of marginally inhabited landscapes bordered by towering mountains stands in contrast to our life in Paris. The stimulation of being around so many children and so little structure has been a welcome change. It is also interesting to see how people have been reacting to Parker, and he to them. Yesterday while at the park I heard Abby defending why Parker had so many wires attached to him using very complicated terms (meningitis, cochlear implant) using tones which conveyed the sense that even she understood that he wasn't supposed to be like this.

Parker himself is working on what appropriate levels of social interaction are with his peers. He has recently taken to a recurrent game of stealing Penelope's pacifier whenever she walks by and then laughs at her indignant plea of " garker ginky!"; something he has re-created with his 2-year-old cousin Jackson with a similar reaction. Upon meeting his 5-month-old second cousin Brandon for the first time the only way he could determine to express his excitement was by laughing and hitting him.

Parker and Penelope are two now. Penelope can say every member of the family's name as well as several of the words and phrases. She has started to have some semblance of blond hair and is a bright, if not overly obedient child. She looks exactly like my baby pictures looked. She has taken to equal treatment demands recently and if Parker is getting carried, she wants to be carried as well and will lay down in loud protest wherever she is (parking lot, entryway, sidewalk, park) until her requirements are met. Longer term, more than any of the others I worry about how she will cope with Parker and his ongoing struggles.

We are now nearly 17 months post meningitis and some days we still struggle to cope with heavy questions as to why, when and how. On a trip to Manhattan last week I stole two hours away at the LDS temple near the Lincoln Center and found solace and reassurance in reflecting there. While Parker is not at the level he would have been had he not gotten meningitis, he has progressed physically and mentally past the level that he was before he got sick and that is an immense comfort. While we would welcome an increase in the trajectory of his progress, most days it is enough that the slope is up, even if that means it is uphill.

The Seasons Change and I don't Hate Holland Anymore

Today I sat looking out the window of the EEG room and wondered on what has happened to me, us, Parker the past several many months. I remember that November day sitting in the same chair with the same boy who has changed significantly in the past 6-7 months, but saw yellow falling leaves, and breathed & witnessed heavenly things. Today I saw green, green, green. Springtime. But it's strange this spring, isn't it? I didn't see alot of heaven.

I struggle with feeling hateful. I never hated anything before meningitis. I never even spoke the word hate, not to mention felt it. It's frightening to me to see how sincerely & completely I can love & loathe at the same time... then I wonder what everyone around me loves & loathes, too. What burdens they carry with their shoulders, sometimes apparently, usually not, on a daily, weekly, monthly, or even yearly basis. And time marches on...with heavy shoulders for years & years. In my case it's soon to be 16 months... But who's counting?

Today I went to the EEG lab with Parker & the sun was shining. I didn't even pray the EEG would be good, cuz I knew it would be. Parker is doing great. But when the 2 unusually-tall-for french, gray-haired & bearded, kind-a-loving-and-creepy-at-the-same-time lab techs welcomed me & my boy in his pushchair, they laughed when I told them I loved coming to see them. FRENCH DO NOT GET SARCASM. They were surprised when I told them. They stopped putting on cords & sand & electrodes for a teeny moment, to look me in the eye & wonder why on earth I would love to see them.

Today my sister brought her baby son to a photo shoot. I brought my baby son to see the creepy/loving EEG techs in the sun, but it quickly turned to rain.

Not pouring, but drizzling & gray.... This lasted the rest of the afternoon.

I had to tickle, pinch, prod, pull, shake Parker in the backseat while I drove on the highway with the sunroof and all windows wide open to make it to the EEG room at 3 pm with a non-napped, very sleepy, whiny boy. The techs were surprised by what they saw when PJ quickly fell asleep. This, was not reassuring to me. They asked me alot of questions. I responded with alot of questions. I know enough to know they will quickly say, "Oh, I can't really tell you, you'll have to wait for the Dr to tell you", but their response was not what I was expecting, their body language was not reassuring, even though their words were. "Is he having any seizures? Is he sleeping well at night? Is he making progress? That is all that matters".

Well, he is not having seizures, he is making progress, but he is not sleeping well at night. But I thought it was the climb-factor...

I don't hate Holland anymore. I have been hating it for 15 months. But recently I have come to accept Holland for what it is.

I am feeling that I am crawling out of a deep, dark, cold, muddy hole that I've been living in (often alone) for 15 months. But this month, I feel like I am nearly out of that deep, dark, muddy hole. Sometimes my foot slips, and I feel muddy hands trying to pull me back in, but for the most part of this month, I have been in the light, free from mud, and it feels good. I mean really, really, good. Great, even.

I think we've visited Holland during every pregnancy. The first time we went with John's sister Spring, I took at least 500 pictures of tulips. The tulips come "on", and Europe heads to see them, and it is truly magical. I remember distinctly visiting the tulips with John's Aunt Marie when I was heavily pregnant with the twins. It's beautiful.

But when Parker was critically ill, someone sent us the following story, by Emily Perl Kingsley, a parent of a child with Downs Syndrome and writer and activist for children with special needs:

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After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.>>

Though the story is meaningful & touching no doubt to anyone who reads it (handicapped child or not), the more people who sent it to me, the more I began to realize I didn't really like Holland all that much. Nobody does. It's just kind of boring. There is only one time of year that it's really worth going to see, right? And I started hating that story, too.

I hated our predictament. I hated what our story was becoming, the reality of it all was settling in on me.

Until last night. When my college roommate sent it to me again. I re-read it, sort of half-heartedly, (albeit completely), because I truly could not stomach the thought of hearing it or reading it again during many months....But the mud is mostly gone, and I thought about how lovely she is-beautiful, strong, sincere, and how she wants for me what I want for me, how I see that she feels my pain with me, maybe even when she looks at her beautiful, "non-handicapped" children...and I see that she carries it a little on her shoulders, too, my pain, and I loved her intensely more than I already did. And I read the whole story again. And I didn't even hate it.

Thank you, Lori.

Thank you for helping me realize that I don't hate Holland anymore. That, in fact, Holland is a beautiful, even magical place, and that there are many, many beautiful faces in Holland with remarkable stories. Some I have already seen, touched, loved, and in the many days ahead, I will no doubt love more. There are also shining angels in Holland. I've seen at least 2 this week.

And the dreaded winter turned into another dreaded winter, but this spring, I am feeling lighter, and happier, and maybe if its not too late to see the tulips, I may even want to go to Holland again.

In the meantime, I will play in the sun with my kids at Parc Monceau. And I marvel at them.

Peek-A-Boo Twins

A long car ride plus adorable twins equals following cute video :)

A Mighty Change

I've breathed alot of fresh air the past few days.

I know it has alot to do with the sunshine in Paris, AND Parker.

Parisians love the sun. The minute it turns a little warm, we throw out our scarves, hats & coats, and head for the parks & cafés. My kids & I spend alot more time sitting on the grass, smiling, playing & laughing. It's heavenly.

We've awakened the past several mornings before normal people do, John and I. Not because we wanted to, but because our little boy has discovered a new talent. He climbs. He is the only one of our 5 children who has discovered how to escape his crib. At first we heard him and found him kneeling on the dining room table, banging on John's laptop. Today we awoke at 5:15 to cupboards opening & closing in the kitchen, and dishes banging onto the floor. Within minutes, John was bringing me a soaking wet boy, asking me to hold him because he needed to wash his hands. I was barely blinking, let alone standing, with disheveled hair, thinking to myself, "I probably DON'T want to be holding this wet boy for some reason...the same reason that John needs to wash his hands..." What could that reason be? Let's just say that his papa found him up to his elbows in toilet water, and his head as far in there as he could get it, too. The toilet brush and water were strewn all over the bathroom.

Last night I awoke at 1:30 to him slapping my face & smiling & head butting me. I had forgotten to close his bedroom door...which is our new custom.

A few days ago, I awoke to John locked in the twins room, playing vigorously, and boisterously. It was 6:15.

I folded laundry, knelt at the end of our red carpeted hallway and contemplated the coming events of the day. My heart was heavy. Soon, it was 6:45, almost time to wake up the other sleeping chickens. But to my great surprise, John opened the bedroom door, and walked confidently down the hall towards me, hand-in-hand with Parker.He stopped about 3 feet short of where I was kneeling. Parker continued as John let go of his hand. He took 3 very sure, unassisted steps towards me, and didn't even crash into me as we met. Papa smiled a smug smile as I no doubt reflected a look of utter surprise. "I told you he could walk," he said.

Two days later, he is unmistakably saying, "Hiyeeeeee!" while waving. Repeatedly.

He is also signing "duck", "ball", "cat", "cow", "medicine", as well as making a few inconsistent corresponding sounds.

I've had two 'ah-hah' mother moments the past few weeks. I am feeling strong, stronger (not physically), at least more consistent (emotionally) than I have for a long time, while at the same time, so very tired & beat up. A dear friend of ours from SF told me sacred things that rang to my soul on a lovely Sunday morning last week.

Saturday I met with a local church leader who sort of beat the sun out of me, and asked me a hard question....."Would you rather Parker was healed or exalted?", he said.

In our faith we believe in exaltation, something that occurs to us, if we live righteously, follow God's laws in this life, we can return to live again with Him. That is the ultimate goal of this life, to be tried & tested, have joys & sorrows, and learn to understand as He does, be like Him. And live honestly, uprightly. But we talk of exaltation as a far off goal, not often applicable to our daily tasks.

It struck me odd that he would ask me such a thing. Of course it is not I who determines whether he is healed (immediately) or exalted (eventually) anyway, is it?

But it changed me.

Permanently.

I look at things differently. I mean, really, really differently. It's all very deep and significant.

My vision turned a little bit more, tweaked a few more degrees out of this worldly realm, and into another.

Suddenly I listen to what people are saying & don't hear what they are saying, if it does not bring me closer to Him.

All the while, I wonder if I can hold one child more, love another better, support my husband differently.

It's a mighty change.

Parker is changing physically now, I am changing ever more spiritually, and intellectually.

You've Come a long way, Baby

No, Parker is not walking, or talking, or signing (very much).

His twin has been walking for 14 months.

She's been sitting for who-knows-how-long...

She signs prolifically for a nearly 2 year old.

Her verbal language doubles just about every day.

Parker has been saying "Hi" for about 2 days now.

He says it just like I do: high pitched, excited, with two-armed waves.

Apparently he has been sitting (again) for about 12 months.

I just ran across this video tonight. It's from June 2009.

Run and not be weary, walk and not faint

I was wide awake at 3 am Friday morning, feeling inspiration that I needed to blog something. After sneaking out of the bedroom so as not to awaken John, I tried hopelessly to figure out how to transfer some notes I made on my phone to the blog. After about an hour, I decided to move onto other things. To my great surprise I came upon John's blog post. I had no idea that we were on the same wavelength. Since I worked a few nights between the hours of 3 am and 6 am on my thoughts, I figure, it's worth the post anyway.

I had another "Perfect Day" moment on our recent holiday. Lucky me!

It was the last afternoon of our 2 week stay in Mallorca. We decided to leave the resort and venture to the beach. After the ultimate perfect afternoon, we wondered why we hadn't done it sooner. We visited the same beach when Axelle was a baby. I remember watching John play in the water with Abby & Hannah, and Axelle squinting her teeny little baby eyes, sitting on the sand beside me.... This time, I couldn't help but think about how much has happened these past 4 years, how much has changed. How wonderful, and perfect I thought our lives were then. And how surreal our lives have been since the births of the twins.... And how blessed we are to still be here, intact, this family of 7. It was heaven on earth for me. I could be back there in a millisecond. Perfect Day, Part 4, or 5, I am beginning to lose count.

So onto my post:

Given 2 weeks without endless running & appointments, I was allowed some time to think about what is important right now, and obsess, a little, too.

I want Parker to walk and run. For the moment, I'll take walk only, but RIGHT NOW, please.

Lord, are you accepting calls? I'd like to place an order...humbly, of course. Because I know you have already answered prayers in our behalf. So many. But I need to pray for more patience while I'm at it, too. PLEASE BLESS THIS BOY WITH BALANCE. PLEASE BLESS HIM TO WALK. PLEASE BLESS HIM TO TALK. PLEASE BLESS HIM TO HEAR. PLEASE BLESS HIM TO KEEP PROGRESSING.

I have become obsessed with Parker walking. He must reach that milestone before he can make further progress by way of speech & hearing, and apparently now schooling. He is not even 2 years old, and he is discriminated against. As it turns out, after the huge decision of the deaf school, they cannot accept him until he is more "autonomous", ie. walking. Sigh.

We saw DR Kossorotoff just before leaving on vacation. She's the neurologist, and always a downer. She said for her, the vestibule is only anatomically located in the ear, it is (of course) linked to neurons. The fact that Peej is not yet walking is neurological-meets-vestibule. She thinks he will walk, but his gait will likely be irregular, not fluid, not "pretty". But when she did not predict that he would walk in 2010 (as did the neurosurgeons), I had to consider how far this boy has come until now, be grateful, and press ever onward.

John said to me last week as we sat side by side and watched Parker climb up the couch, then attempt to scale the wall to get to the stairs at the villa we were staying at, "He's great at climbing! Maybe he can be a climber, even if he never walks."

Imagine a mountain climber who does not walk, with nearly zero balance, almost complete vestibular dysfunction.

I am reminded of a time just about a year ago when John & I were asked to go to a new "bad news room" to hear of Parker's bilateral, profound sensorineural deafness, where we met for the first time, the doctor who would perform his CI, and the doctor who would meet with us repeatedly & regularly to do his mapping sessions for what seemed like months on end. As we waited in this room for the doctors from each team to arrive (neuro, neurosurg, ENTs, critical care), which was obviously a recently converted "bad news room", we saw some paintings leaning up against the wall-waiting to be hung. The first was of some majestic mountains with stiff peaks, and blue skies. I peeked behind to see what the other picture was, as John thumb-typed on his Blackberry. He asked, "So?"... "More mountains..." was my reply. He shrugged and told me that there was a Haitian proverb he learned on his mission: "Behind mountains, more mountains."

Parker Buddy.

In Spain, the girls attended a Kids Club where they made various arts & crafts during their spring break. After seeing us almost daily for 2 weeks, the Director finally asked me in sort of a German-meets-Spanish accent while speaking English, "So do the doctors think that Parker will be a bit slow-ly when he gets older? Are there other cases to compare him to?"

Maybe everyone is asking the same question, but at least not to me, his mama! Or in front of his sisters whose ears prick up astutely when adults ask me questions about Parker's condition.

This, just after I felt several weighty stares as I walked awkwardly alternately holding PJ's hand, hands, arms, chest as he attempted to walk, flailing arms and legs & head, with excitement kicking a ball in the wind several hundred meters on our way to Kids Club.

Penelope adeptly walked ahead, behind, alongside us, occasionally stopping to smell or pick a wild flower.

Rather than feel anger or frustration, for their lack of understanding, or innocent, albeit hurtful looks or questions, I decide to pray.

Sometimes it's all I can do.

So I bow my head in thanks for his life, for his blessing me. For Parker's bright blue eyes, his gorgeous tossled curls, his light, his smile, his zeal, his style. I worry and love & wonder how a loving Mother & Father in Heaven can manage to worry and love each of their children infinitely more than I do mine? It's clearly super-mortal, super-natural, super-amazing.

This is my prayer:

Dear Father in the Heavens, Thank you! Thank you for blessing me, and us with this trial. Thank you for stretching me to grow in ways I never dreamt possible. Thank you for making me stronger, and softer at the same time. Thank you for teaching me, refining me.

Thank you for sparing my son's life. Thank you for giving him back to me. Thank you for allowing me to hold him again, and again, and again.

Thank you. Thank you for blessing me with faith to know that you could heal him and that you would heal him, but chose not to. Thank you for teaching me to accept that it is not I calling the shots. Thank you for making me more humble, more teachable.

Thank you for giving him back to me, whatever state he is in. This baby son of mine.

Thank you for every day I get to hold him, smell him, run my fingers through his curly, thick, beach-blonde hair, while rubbing his feet. Thank you for every chance I get to teach him-how to walk, talk, listen, play.

Thank you for teaching me by your side. Though I am sometimes blind to see you, I feel you there-beside me, holding my hand, putting your arm around me, sometimes holding me up when I fall, when I want to crumble...in the middle of a street, in a quiet room with an ear specialist, social worker, or other someone--talking about my son. MY HANDICAPPED SON. With a handicap card that I seem to have consciously or subconsciously misplaced, who when I arrange for him to finally start school for the deaf, they tell me, if he does not walk, they cannot & will not accept him.

But who would refuse this boy?Who could refuse this boy? I breathe deeply & see his brilliantly blue eyes & huge wide-open smile in my mind's eye. I realize harshly that others who meet him, talk of him, see him, will see nothing but "handicaps". But not you, Lord, and not me. I see through them. I see a perfect, shining, hearing, running, laughing boy. I see him, I know he's inside of there. I see past his anti-seizure meds, I see brain lesions that are trying to heal, trying to fight, trying to battle. Trying to connect neurons to perfection sidelining imperfection. I see the perfection is in there, the potential for perfection, at least, trying to break free of these mortal imperfections.

And I think: What am I? I am but mortal? What am I to do?What can I do for my son, dear Lord? I feel a calm presence wash over me, and I remember. I remember that I know something of perfection. I have seen it, almost tasted it, breathed it in...those sacred ICU days last February and March.

Dear Lord, please give me wisdom and strength, and faith to see through the mortality, the imperfection, and the loathing of meningitis. Help me to see this perfect boy struggling to break out of his carnal shell. Help me to find tools to make the imperfect meet the perfect and be one perfection again.

This is my plead, my prayer in thanks, and deep, somber, humility. I am keenly aware of human suffering now, It sometimes cripples me. I am sometimes crippled with sadness, crippled with heartache, crippled with pain, fear, anger.

I am sometimes fortified with strength, flashes of inspiration, light. I am taken with force in love and hope and courage. I get off my knees, pick up my climbing gear and prepare to climb. With Parker. Alongside him. Just as you are beside both of us.

Dear God, please guide my paths, our ways. Please make my mortality immortal. Please bless me as a warrior woman, a mother in righteous battle--fighting for my girls' virtue, and my son's future. Please keep my husband battling strong, and big, beside me, to give me eyes to see what I miss, ears to hear what I cannot, lift to fight again when I fall.

I pray I am equal to this task. Thank you for trusting me in this, though at times I feel grossly inadequate.

Please help me climb one mountain at a time, in strength and wisdom. And help Parker to climb and climb and climb. Walk and walk and run.

I ran across some scripture that deeply touched me this week:

Mosiah 4:27

"And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore all things must be done in order."

Isaiah 40:31

"And they that wait upon the Lord, shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk and not faint."

Enduring in faith has this critical component--that even if we are too weary of it all, we come, through our spiritual efforts and strugglings, to learn that there is One who does not weary in supporting us:

"Hast thou not known? Hast thou not heard, that the everlasting God, the Lord, the Creator of the ends of the earth, fainteth not, neither is weary? There is no searching of his understanding" (Isaiah 40:28)

These are my prayers today, that Parker can be diligent, and win the prize, in Wisdom and Order. That Parker can run and not be weary, walk and not faint. Some day. Some day soon. In the meantime, I read Isaiah's words in awe--I know that the Lord does not weary, does not tire, even when I do.