Nearer My God to Thee, I love Monsieur Franzoni

It seems sort of sacrilege, but its where I'm at right now. He is awesome, which one you ask? Both.

God, my Father who Lives in Heaven, he orchestrates this thing I call life. I had no idea how much before, because I wasn't really listening all the time. I am trying hard to listen now. Maybe it's because Parker does not hear that I am trying even harder to listen for him, in behalf of him.

I can't help but think again & again that the reason all this has happened to us is to draw us Nearer to Him.

Nearer my God to thee, Nearer to thee. Even though it be a cross, that raiseth me. Still all my song shall be, nearer my God to thee, Nearer my God to thee. Nearer to thee. Though like the wanderer, the sun gone down, darkness be over me, my rest a stone. Yet in my dreams I'll be, nearer my God to thee. Nearer my God to thee, Nearer to thee. Let the way appear. Steps unto heaven. All that thou sendest me, dear mercy give. Angels to beckon me, nearer my God to thee. Nearer my God to thee. Nearer to thee.

Monsieur Franzoni is like a real-life version of Napoleon the Premier. He is even from Corsica. Short, dark hair, all smiles. He welcomed me and Parker at CEOP last week & said, "Lets play with Parker first. I want to see where he's at...what does he hear", etc. Then he got down on the floor with Parker & played, ON HIS STOMACH, on the floor of his office. He also told me we needed to give Parker bottles with tops to screw & unscrew in the bath. Funny since my mom asked me the night before how his fine motor skills were doing? I said, I have been working on gross motor. She is always right, my mom. I have to work on both, Parker has to work on both. She always knows best. How is that? I hope my kids think the same about me one day.

In Sunday school last week someone raised his hand as we were discussing Joseph in Egypt and his trials. He said, "I wouldn't take back any of my trials because they are what make me what I am, and I am so grateful for them." I had to shake my head and say, "I am still in the fire & it's really hot in here!" A young friend of ours after class quickly reminded me that it is, in fact, in the rough waters where the rocks become the smoothest, trying so hard to hold their ground. Yes, I say, only thing is that I thought I was pretty smooth before.

So Penelope & I got stuck in a downpour with hail 10 minutes before & after sunshine on Thursday and a woman said to me, "Vive le mois de mars a Paris!", and then I ran into a friend of mine also from Los Angeles who said, 'Take me back to California", and I realized after 10 winters & springs in Paris, I am still surprised by the rain & unpredictability of springtime here. Though I beg for it all winter long, Spring is just not all that fab. I had this realization that we always want what we can't have, and always remember things with more fondness than perhaps deserved. I do, anyway.

But when Parker woke up with a huge rash & swollen "zizi" (as they call it in french) on Friday, I realized I am just not equipped to send this baby to surgery again. Ever. The American pediatrician said it was a bad circumcision that would need to be redone immediately. My pediatrician was not convinced, but after we saw a pediatric surgical urologist, who just covered him with xylocaine & squeezed the heck out of him & sent us home with some betadine wash, I thought we were no where nearer fixing this problem 24 hours out than we were when we started on Friday morning. This boy is nothing but trouble. And I love him. So much. I just wish I knew exactly what to do every time he needed me.

He has been taking antibiotics since Tuesday for his sort of typical otitis/bronchitis he seems to get every 6 weeks or so, and I think he gets wind of it & he breaks out in a rash. Who knows why this time the reaction was more severe, but Saturday I prepared the kids for bed, John asked my permission to make pizzeria pizzas with the girls (ie, destroy the kitchen & not clean it up), and I put pajama-clad-PJ in his stroller & ran to the car, headed to Necker. At least this time, it was more calculated, figuring an ER visit on a Saturday at dinner time couldn't be all that busy. But as I was running in the twilight, and thinking about how much I dread going to that place, Parker waved his arms & kicked his legs in excitement. He was content, even though his penis was the size of a clementine. I thought for more than a half second, "I want to get away, I want to fly away."

I want to run away.

What if I just keep running with him? With Peej. But what good would that do? What would that accomplish?" So, like a responsible mother (not the hazardous adolescent that still resurfaces in me sometimes), I got some cream for his cut-open lip (Hannah fell on top of him, chunked out part of his lip as we were walking out the door. He was bleeding ALOT), and reluctantly drove to the other side of town.

I try not to cringe as I walk into the dirty, old, Emergency Room. I try not to think about last year him (& me & John) living just 3 floors above for several weeks. I try not to exaggerate when I explain to the triage nurse in my impeccable (!) french that my son's unmentionables are worth mentioning. She asked me if he'd ever been there before. Each time I respond with the same, "Unfortunately", and each time, the triage nurse seems surprised by my response.

So after a "baby doc" & another "baby doc" (my terms for inexperienced, student doctors or fresher docs) looked at Parker, they decided to consult a more experienced doctor who plainly & simply determined he likely has a fungal infection from his antibiotics. She sent us home less than an hour after walking though those dreaded doors with a prescription oral antifungal and topical antifungal.

As it turns out, I think she was spot on, since though the redness has not markedly decreased since that Saturday ER visit, he was a "new man" Sunday night, clapping, waving, blowing kisses & even climbing on things I've never seen him climb on before. Things are correcting themselves. We're constantly re-aligning.

And I told the "fluffy" school an official "yes" only to have our regular speech therapist try & talk me out of it afterwards. Who knows why, but said we are not in a hurry to decide anything sine PJ is not even 2 years old yet. Of course I agree, but I want to stimulate him as much as possile & as best possible until I can't any longer. I can't help but wonder if she hasn't got his best interest in mind.

Me & Parker go back to CEOP tomorrow for some medical/psychological exams. I hope he wows them. I am trying hard not to think "handicapped" these days, but think of my cute cousin who at the age of 9 said to me, " I prefer to call it handi-capable".

He seems much more capable these past 2 days & to me he is extraordinary. Even though he is a huge pain.

He shines, She hears

In french, the operating room is called the "bloc operatoire". I can' t help but think it sounds gory imagining all of the blood & machinery that goes into (or comes out of) surgery. The bloc, the butcher's block, with MY baby. My innocent little one, MY perfect being. SO I hand him/her over to a virtual unknown & trust completely this human to perform superhuman tasks on my child, with my consent. It's all bizarre. Very abnormal.

I had no idea that I would completely fall apart as I waited, waited, waited. Waited today, in another operating room waiting room.

I sent my 4th out of 5 children to surgery today. It makes 5 total for the girls & Parker's 6 for a total HALL offspring surgery count at 11 to date. Eleven more than any mother wants for her child, or children. I never broke any bones or needed any surgery until I had 3 children, and that surgery was elective. Surgery is not something I want to know too much about.

I entered the clinic today with surety that we were doing the "right thing" getting this "minor" surgery for Axelle's ears. She has almost 40% hearing loss in both ears (temporary, we hope) and these tubes will put her eustacian tubes in the open, allowing her to hear better immediately. But truthfully, what surgery is minor? Especially for a worried mama/papa in the waiting room? But the fine print of this surgery said, "In rare cases, could cause deafness". Humph, I think to myself, "Does lightning strike twice in the same place? Or are the chances greater because of some unseen predisposition?" Clearly, we've got this predisposition. Bad ear genes. Me & Penelope are the only ones in the 7 without surgically-assisted (albeit temporary for John and the girls, or permanent in Parker's case) hearing.

I couldn't help but think as I sent her to surgery in her new pajamas and Pet Shop caterpiller "doudou" named "Minty" that I could be sending my hearing deficient Axelle to surgery in hopes to improve her language and audition, but she could actually return permanently "handicapped" and completely deaf in our hearing world.

Of course I thought of the similarities of Axelle and Parker when they were in the bath together last night. They look more like twins than PJ & OP, their blood type is the same, and shared by no other family members. Yes, they are alike, they surely look alike, but she is atypical in so many ways, so beautiful and unique. SO AXELLE. So unpredictable & hard to figure out. In the back of my brain I thought, "Well, at least she knows alot of signs, and she could get implanted, and then we'd have some solidarity for Peej"...worst case scenario. But still, trying to look at the bright side of things.

As I wait what seems an interminable amount of time for her 5 minute surgery to end, I can't help but reassure myself all is well in paradise, all is well here. The sun is shining all around us, after this long, cold winter. But I also think, "What if? What if? What if?"

I walked into the clinic on time, sure of our destiny, only to find we were meant to share a room with a 14 month old girl and her parents, who also awaited her surgery. Two hours later, I am not reassured by the fact that her surgeon is also Axelle's surgeon, and why on earth is it taking so long for her to exit the bloc?I see this little one running, walking, babbling, and she is tired & starving and waiting.

AND I LOSE IT. I am reminded of my little one at home, of my little boy who was designed to walk & run & babble, and yet does not. I am reminded of a harsh winter only to be followed by another. I am reminded of my hopes that he would "snap out of it" or "snap into it" in relation to his brain and be like other "typical" boys, and realize that he is not typical, or no longer typical. He is no longer ordinary. He is extra-ordinary.

I see these very worried parents as their baby finally goes to surgery & think to myself, "Man, they have NOTHING to worry about & yet they worry". Can I reassure them? Should I? Should I even tell them of our heartache & sorrow? Will it make their suffering less? I decide not to, I decide my heart & soul would be wasted on them, and their walking, running, babbling, non-pneumococcal-meningitis-infected-14 month old.

My sister called & asked why I seemed "Not ok?". My mom called & asked if I "survived?", She said, " I knew this would be really hard for you." It always will be, you cannot be the same, you will not be the same"....it's not right or normal or expected to send your baby to the "bloc" with an unknown & trust them implicitly to care for your little one. The block. Not normal at all.

I saw this little girl running with ease in her slippers & hospital gown open in the back & thought I just want so desperately for Parker to walk & run. In most ways it is harder now than it ever was then, in that coma, in that prison-called-Necker-last-winter. I walked with angels a year ago today. They carried me with out-of-this world love & concern & ease & comfort. The Holy Spirit was my constant companion-for 6, 7, even 8 months or more.

Now I am left with the reality of and pieces of my "handicapped" son, with brain damage(?!) who does not walk or run. Who does not babble. Who does not stand unassisted, like babies much younger than him. Who is deaf, who hears.

I know I am to learn patience, and rely on the Lord. I had no idea for how long. I had no idea what He would ask of me. I could easily shoulder some burdens for a short time, very heavy difficult burdens, but medium burdens for an indeterminate amount of time? It seems too much at times, too heavy for me. My shoulders & back are too weak, shoes too worn.

I know I am not alone. I am never alone, but I often feel alone, surrounded by people. It's surreal. I walk on a plane not many others walk. I exist "here", but not exactly. I live in a place only mothers of "handicapped" children live and walk & breathe. It's so very lonely "here" and "there", it's indescribable. At times I am thrown to one place, then another, or someone will force me into one zone & try & keep me there, but I fluctuate between these 2 places, between these 2 realities...sometimes in the same thought, the same breath, other times, I stay in one place for hours or days or even weeks.

In one place, my baby is still perfect, so blond & curious & happy & just learning to sit up. He is not yet 8 months old. In the other, he is confused, obtund, desolate. I see this look in his eye I cannot wrap my hands around, I cannot reassure, I cannot communicate with. He wants to be in that alternate reality, and yet I know he chose to be here in this reality, with us, because that is where we are. This is where we are. So, PJ, I take you in whatever realm or reality or place you are, and try to go there with you, and try to be what you expect me to be, I try to be the woman and mother God intended me to be, and wonder if I go there with him or stay here in this place, this "typical" place with "ordinary" people, and try to make him "typical" or "ordinary".....or just love him & welcome him whatever way he comes as being truly him, and extraordinary. In that other, extraordinary realm, plane, place, sphere.

This journey I take with Parker. I take it often alone with him. He who does not tell me he understands with his words or actions, but I sense that he is wiser than I. His spirit shines while mine is lackluster. Though he has greatly suffered & I believe he continues to suffer, he still shines. He shines!

And Axelle comes out of surgery & she hears!

He shines & she hears.

I join the rest of the lot at home and thank God, again.

My dear, dear God.

Slow And Steady wins the Race?

But it's not really a race, is it? The girls would sing the Hannah Montana song to me, "It's all about the climb!"

So I have been debating these past weeks on whether I need to be a very organized, strict & efficient mother, or more of a warm & cuddling, sit-on-my-lap-kinda-mom. It's impossible for me to be both. I hate not being able to do it all. I am accustomed to doing it all. I always have. I always will try. But it seems I cannot actually physically, emotionally, spiritually, psychologically DO IT ALL.

There is just too much to do, too much to worry about, too much homework, too many appointments, too many projects undone.

So, I have been thinking what on earth I could say about Parker and us for the past few weeks, and it is difficult to find anything monumental to share. My mom keeps asking me if he is making progress. If the answer is still yes, we are making forward steps, even if they are baby steps.

I am discovering I am not a patient person, contrary to my prior beliefs. I have realized in the past few days that I try to run this house like a tight ship, barking orders & bossing people around-big people and little people. I have been frustrated because they don't seem to respond the way I think they should, or expect them to. I have noticed recently that I do not like the way the girls speak to each other, grab things from each other, the general lack of sharing, arguing, shouting, etc. Then I hear myself shouting at them to "Be nice" or "Go to time out!", and how can I be surprised that they grab things from each other when I have the same impulse to grab my phone from their grubby little hands after asking for the umpteenth time to stop playing & do homework or practice piano or come to dinner....or whatever.

We had a lovely 2 week break from school, we visited dear friends in 3 different countries & it was a reprieve to be with people who care for us and we sensed a genuine love from them and it was a sort of balm for me and our wounds and all we have suffered the past year. And it was a good distraction. A distraction from the running to and from constant appointments, and worry & busy city life.

I went to the temple in Frankfurt. I have only been one other time since Parker was sick. I feel direct inspiration and peace & love & meaning there. I felt many times the words come to my mind, "Walk forward with faith" while I worshiped there. I have been caught up on the fact that I want Parker to walk... and I fear he is still far from walking. He was strong before vacations, but seems weak & tired now, a bit disconnected, I can't quite put my finger on it. He is not so smiley or active. His movements are slower, he is slower. His reaction time is slower to respond to our speech. On Monday he went to occupational therapy and speech therapy for the first time in 2 weeks. The occupational therapist said, "He seems tired", and the speech therapist said, "Making progress".

So the control freak part of me decided to make charts for everyone, reading, piano, homework,etc, etc and want to make a "walking chart" for Parker to get him stronger, I am not sure if it is better just to sit & love & hold everyone more, and stress less. And press forward with faith that all will be well, and realize that I am refining & growing & learning patience, whether I want to or not. And just hold on to my hat & enjoy the ride. It's all about the climb, right Miley?

Here is the scoop since no doubt you are dying to know:

EEG-Good reports, will not do another before visiting Neurologist at Necker mid-April, Neurologically, when Parker gets a little stomach bug or conjunctivitis or cold, it knocks him out. He seems very very tired & sick. I think that he's fighting a few different things this week, which slow him down alot. Vaccines to boot.

Anti-convulsives-changed one from a liquid form (tasted awful) to a more difficult to administer powder form, seems fine.

Hearing-still responding to his name, and laughs & dances when we sing, but when he is bored or frustrated, he pulls at his ears to throw his hearing devices in protest. Got the next rendez-vous with the head speech therapist at Necker for 6 month-evaluations in April. These are always very stressful for me, since I expect her to show Parker numerous animals & ask him to find the cow or the duck, etc. I am not sure Penelope could even do that at this point. I also polish up on my signs before going in & add more audio-visual games into our daily routines.We need to get him signing & vocalizing more. He will vocalize sounds and "call" you when you hide around a corner to make you reappear. Before vacations, I saw him sign "Thank you" for the first time. I've seen him sign "Bonjour" and "more" about 5 times each. Today I said while he was sitting on my lap (without any signing or miming), "Can you clap?" and he did! We were all pleased. We all clapped for him.

Deaf schools-we visited the 2 options in Paris for Parker next year. Unfortunately we loved both of them. We need to make a quick decision, but it seems daunting. I sort of wish we hadn't even visited the 2nd school, since I loved the first one so much. The methodology is completely different for the schools, which actually makes it more difficult to decide. The first seems to be more global communication-using some signing and audio-visual cues while teaching Parker to listen & follow commands and eventually speak (in French). This one also seems to encompass more and different "handicaps" (I still can't say or write or think the word without something in my mind & stomach turning over). But the Director of the school was absolutely warm & loving & genuinely concerned. He listened to us babble on about Parker's illness & history for 2 hours. Then he took a big breath & said, "Man, you guys have been through the ringer!" He was very attentive & responsive to our every question. The second school has a different approach. They teach cued speech, which from what we can undertand is using a very few signs close to the mouth to distinguish between different sounds that look the same while reading lips, the "buh" and "muh" of "B" and M" looking the same visually, but meaning 2 very different things actually. The Directrice was very clean, efficient, not warm or fluffy at all. We sat down in her office & she said, 'So what can I do for you?" She talked AT us for about 45 minutes & then said, "Well you will need to make up your minds rather quickly since there are not many spots left". I liked her efficiency, but she was not fluffy at all.

Motor skills-Parker did his most recent physical therapy session at Garches just before vacation and the therapists said he is strong enough now to walk, so it appears that it is his balance that is playing in his non-forward-upright-progression at this point. He will pull himself to standing, even up against walls and slowly edge his way along. He will also move from one object to another while standing, but needs a steady hand. He is so pleased when you hold his hands to walk him, he squeals with delight & takes several quick, forward steps. I think he is pleased to be up, but the physical therapists say he needs to focus more, and slow down. The physical therapist also said she didn't like his "strategy" and way of thinking because when we moves forward, he often just goes over a big obstruction or toy or whatever rather than going around it. I sort of like that he wants to plow through things & get to his goal.

The pediatrician this week said, "Il faut se battre". We continue to fight.

So I am torn between the cuddly-sit-down-and read & play with my kids and being efficient making & setting goals & charts to accomplish these things. I guess in the end that is the decision we must make for Parker's schools, too. Do we go fluffy & loving, or efficient & cold? In any rate, we still keep fighting & climbing.