It's time to start thanking

I am someone who lives out loud, but reflects very quietly. I live day to day running & smiling & rushing about. I have spent the past several years doing just that & trailing at my heels (or following at their oft-sparkly heels) lots of little ones around the streets of Paris. As such, I am not one to shout my dreams or woes at the rooftops. When I wish to tell someone how remarkable they are, I miss the fleeting moment and regret. I told John recently that I am not a thinker, I am a do-er. After 15 years of marriage, he should, after all know that about me. In the end, I figure people don't really want to hear about me. There is nothing news-worthy to tell. Life is good. Very good. Or at least it has been until recently.

Though I have reflected & echoed and corrected & edited John's writings about Parker to this point, perhaps the time has come for me to start adding to this pot before it starts boiling over for me.

Though I am reserved, I have always been thankful. Anyone who knows me will attest to that I think it is important to express gratitude. Most people who know me have received multiple "thank-yous" from my quick & sloppy hand.

Albeit it impossible to neatly wrap up all the emotions I have felt in the past 5 weeks, I feel I can start to express myself with thanks. This, is easy for me. This is good by way of Parker. This means perhaps I am coming out of the critical phase enough to verbalize my appreciation for you. Part of the reason I have remained so silent is that the outpouring of love we have witnessed has been monumental. I was heaven-bound---or residing-- for days & weeks and when I finally started descending back to this planet I found it nearly impossible. How could I ever look at things the same again? Every single aspect of my life has changed-forever, I hope. The manner in which I see things and people has changed. Even the way I breathe seems to have changed. Things I thought were once important have no meaning at all to me. I smile more--is that possible? Maybe I smile longer. I also cry more-and harder. I cry for sadness, but also for love. I smile and cry for you. For all of the people who carried me into that heavenly place---or prayed me there--or allowed me to stay there--as long as I needed to be there , to commune with heavenly beings, to see heavenly beings, to feel fortified by spiritual things.

Thank you. Thank you for carrying me, us. Thank you for praying for us. Thank you for believing in miracles, in God, in faith, in Parker. Thank you for trusting your gut feelings that "all would be well" when it certainly appeared not to be, but I felt peace anyway. Thank you for sending us written notes, emails, inspiring quotes. Thank you for sharing your trials with us-often secret trials and showing us that you survived, and though even if Parker did not, we could.

I have realized our capacity to learn and love is so much greater than our comprehension of such things.

Parker refusing to plan

My blackberry revolted against sending and receiving e-mails the last few days so we are a bit behind in the update.

Saturday we got information from the doctors that the procedure went well and the tests came back negative for meningitis in the liquid. The neurosurgeons also indicated that the puncture was probably low in the intestinal track (colon) so there was a reduced risk of infection given the tube was likely not in the system for a significant amount of time. Given the remaining risk of peritonitis they wanted to keep him for a couple of days of observation. He hasn't had a fever and although they initially were going to put back in a feeding tube he ate well on Saturday so they decided against it.

He has also been having regular solid bowel movements with no sign of blood in the stool.

As we were feeling fairly confident in his recovery and felt comforted by our prayers, even though PJ was still in the hospital on Sunday, Renee and I decided that it would be ok for me to leave on a scheduled work trip back to the US. 8 hours of flying without any kind of communications seemed very long.

On Monday morning Renee arrived at the hospital to find that they had moved Parker to a new room. They had taken off all of the bandages so that the stitches were visible-- they opened him up in exactly the same places they had before. When Renee inquired as to how soon he could check out one of the nurses told her that not for a while as they had done a scan earlier that morning and were now planning to install a different kind of shunt. Confused and distraught, Renee spoke to one set of neurosurgeons and I spoke to another on the telephone who completed the information. They did not perform a new scan but in the scan from last Friday they noted increased fluid in ventricles of the brain. The previous fluid was somewhat on top of the brain and they had done a sub-dural shunt to relieve it. They were now discussing whether a more permanent ventricle shunt would be needed. They also told us that the liquid in the ventricles is more common in meningitis and was not unexpected with Parker, the liquid on top of the brain is less common. They are holding him for observation to determine if the ventricle shunt would be recommended but we are very much hoping this is not the case.

Renee and I had foolishly believed that the surprise elements of Parkers conditions were pretty much over. There was the initial week of the risk to his life where new things would come at us pretty fast, then there was the day they determined that he had profound deafness which, while not a complete surprise, was still a watershed moment. After that we let ourselves believe that was the end of unanticipated events and we could get on with structuring his recovery and adaptation period. So far that structuring and organizing is not going to plan as our little guy seems to throw new and unique challenges at us.

On some level this may be good for us as we learn to adapt and try to focus on goals and outcomes as opposed to plans and deadlines. We have been forced back to a level of spontaneity in living life as it comes at us that we had some how managed to schedule out previously. I think we both tend to procrastinate tasks that we don't want to do until just before a deadline but more recently we find ourselves getting it done along the way knowing that we may not have the opportunity to have as much time as we thought we would. Still, we would all be happier if Parker could find some other avenue of adjusting our priorities other than extended visits to the hospital.

Parker is back at Necker

After a short 8 days at home we had to bring Parker back to neuro-surgery at Necker where he had emergency surgery to remove the shunt.

Just as Renee was preparing to take Parker to Garches she was changing his diaper and noticed that there was about 5cm of tube sticking out of his rectum-- the other end still attached to his cranium. Garches told Renee to take him directly to Neuro-Surgery at Necker. Dave and Leslie Arnold accompanied Renee to the hospital and Dave and I gave him a blessing.

At Necker they did a CT scan, an abdominal x-ray, and then, later, an abdominal scan. They determined that there was a reduced amount of liquid on the brain and they would prefer to take the shunt out completely as opposed to replacing it as they first anticipated doing.

The bottom of the shunt tube typically stays in the peritoneum (the sack where all the organs are held) but in the extremely rare cases, such as for Parker, this passes from the peritoneum into the intestines and then out the rectum. There are two large risks associated with this: first, the risk of peritonitis-- that bacteria in fecal material enters the peritoneum and causes an infection; second, the bacteria could travel up the tube into the brain and cause another round of meningitis.

We are praying at this stage that there will be no infection. They have sent the liquid in the brain and tube for analysis and we should know in a couple of days whether there was any bacteria present.

Dr. Puget (she placed the shunt) told us that we may only need to be in the hospital for 2 days as long as there is no infection and then we will need to come back for a check-up in three weeks.

Parker went into surgery at 8:25PM and came out at 9:35PM. The surgery went well, without complications as far as we can tell as the doctors did not give us an update afterwards..

It goes without saying that it is hard to be back at Necker. There is some comfort in knowing all of the people: the doctors, nurses, lab techs-- knowing the drill of what we can and can't do, where to go for a scan. It is still difficult to be here again--so soon. Difficult to hear him cry as they try to put in the IV for the 3rd or 4th time, to see him hooked up to machines and tubes again. Difficult to wait to see what the results of the bacterial tests are, debating if we prefer the known ravages of meningitis to the unknown ravages of peritonitis. Difficult to go back to the recovery room, to have him wear only his diaper and the head bandage, to see stitches that were slowly dissolving replaced with new ones. Hard to send out an update again on problems and not progress, to start unplanning all the re-adapted plans we had made. Wondering how many days before we will be back home.

Still, we might be naïve but it is much easier this time. Maybe because we have been here before, maybe because PJ is more alert and responsive, maybe because the support at home has continued through the past week even though we thought and said we didn't need it.

Maybe because as we went for the second CT scan of the day we ran into Dr. Oualha who was taking another patient for an MRI. He was surprised to see us but he told us to have hope, trust in Parker and that everything would be allright-- that is atypical for Mehdi-bunny's namesake.

Mostly it is easier because now we have a greater sense of faith than we had last time.

The fact that this type of shunt complication is incredibly rare, the fact that bacterial meningitis is incredibly rare, reinforces to us that our little boy is very special. He defies odds- sometimes in ways we wish he wouldn't. We start to understand that odds, chance, means nothing-- all of this is in the control of a loving Father who is watching out for Parker, and us.

Getting things going

Yesterday was Parker's first real day at the Garches facility. He went in the afternoon and he had a 30 minute physical therapy session in which he complained loudly the whole time. It was not a total waste as Renee also met with a slightly brusque, but efficient Intern who was more concerned that PJ was not smiling and agitated and recommended that we revisit the idea that he was suffering from acid reflux. We are fairly certain that he had this as an infant but we had never treated it as we figured he would grow out of it (and eventually did). The Intern thinks that this may have come back due to a weakening of all his muscles so we are treating this to see if it improves his disposition.

We also tried to fix a time to get an MRI and new hearing tests done but as we are not urgent the timing for these kinds of tests was put off until the fall. The Intern again suggested that if we could set the date for the surgery this could be used as "leverage" to get all the tests done. He suggested we call the ENT (Dr. Couloigner) as soon and as early as possible to get an appointment and said he would have the secretary in Garches do the same. As much as we disliked being in the hospital, we began to miss the aspect of priority to tests and access to specialists that it afforded us.

This morning we both called as many times as we could and finally Renee made phone contact. Renee insisted it was fairly urgent that our son be seen. Once she told the secretary it was "Madame Hall", she said , "Oh! Notre petit Parker?" ...Renee smiled, reassured and said, "Oui, Madame..'.Notre' petit Parker" and they set something up for the afternoon back at Necker.

We had somewhat expected this meeting to be a formality and a brief meeting but when we arrived they had us visit with the speach therapist, ran a different auditory test and the doctor himself walked us over personally to get an on the spot MRI (the earliest they could get us in was tomorrow). Dr. Couloigner explained with a slight shrug that this was typical Latin culture- impossible to schedule things but if you have a personal relationship with someone they are willing to make things happen.

When we got there they didn't just try and give us minimum service but spent a lot of time explaining things to us and answering questions, showing us what the implants look like and explaining to us the procedure. When we met with them previously we had some questions which our friend Mike Scheuller who is an ENT suggested we ask. The medical staff remembered the previous questions and wanted to know if we, or our friend, had further questions and seemed genuinely interested in making sure that we were comforted with the proposed treatment plan.

They also indicated that the anti-convulsion medication may be causing him to sleep more. We are going to check this level with the doctors at Garches on Thursday.

We now have a plan for the next couple of months with fixed dates and steps we have to get through. The cochlear implant surgery is scheduled for May 15 and he should be in the hospital the day before and for three days after. There is some ambiguity on whether they will be doing implants in both ears or just in one -- typically in France for meningitis patients they do both sides. Dr. Couloigner indicated there were no signs of ossification at this stage.

The implant itself will be activated a week or two later once the incisions have been healed. They will then tune the implant over the weeks following to get the right calibration so that he will hear sound.

The risks are mainly related to infection as they have to carve a place in the bone for the implants but there is also a minimal risk of the facial nerve being temporarily paralyzed.

He also has the risk that the communication centers in the brain have been damaged by the meningitis which will not allow him to speak. We won't know that for a while but they have already identified a speech therapist in our neighborhood specialized in pediatric cochlear implants who will start to work with us and Parker even prior to the implants.

They suggested that for activities such as bicycling and judo that he wear a helmet and to avoid rugby and boxing.

We are very reassured by the progress being made for our little boy. Today Parker and Penelope celebrated 9-months of freedom from the womb-- Penelope with her first tooth and first forward crawl, Parker with taking steps to regain his hearing.

For family night we explained to the girls about the implants and also talked about them trying to use signs more when they talked to PJ. Each family member made up a sign for themselves, Axelle has the coolest sign (kind of a hatchet sign followed by an 'L' between her thumb and forefinger) -- for Parker we chose something that represents how his name is pronounced in French: 'Par Coeur' or 'by heart'. We also learned a song that Sarah knew the sign language to. The speech therapist says the goal is that he will be able to speak and hear and may not ever need to sign, but at least for the next two months that won't be the case and we all want to make a little effort to have him feel included.

Hannah and Abby are starting to realize that there will be changes. Both of them have had challenges with their ears and both currently have tubes. When Abby heard about the external 'hearing aid' part of the implants she replied "but he won't have them forever, just until his ears get better?" We explained to all of the kids tonight that he wouldn't have his implants forever-- just for his earthly lifetime.

First weekend of Spring

Our goal was just to relax for the weekend-- no stress, enjoy family time, think about other things. That is not as easy as it used to be.

Parker is fine, he is progressing, strengthening, interacting-- still, he is not the same boy that he was a month ago.  We love our new little Parker intensely; our 'normal' weekend activities reminded us that we miss the old little Parker in so many ways.  

Part of this, maybe a lot more than we know, is due to the deafness.  While he is sleeping we will speak his name loudly near his head, we will close the door to the closet forcefully, we will let Penelope cry just a little bit longer out of the hope that he will react. He lays there, eyes obstinately closed.  We have a lot of hope that the implant surgery will help replace his natural hearing. Even so, he doesn't hear anything right now and part of the surgery entails permanently deadening the natural ear.  We have to make the choice between hoping illogically that the ears will somehow heal themselves and potentially risking future medical efficacy, or progressing to the medically sound level of implants knowing it is a bridge that we cross only in one direction.

It is also difficult for us to gage what his medical baseline should be.  We are accustomed to working by reference: remembering how we dealt with a particular situation with other children, calling friends and neighbors, or ultimately calling our pediatrician.  We live without precedent now. In the past Parker's vomiting would have been as normal and as important as a burp. Yesterday he vomited twice and both times we wondered if we should call the neuro-surgeon or neurologist or return, unimaginably, to the hospital.  

The most difficult thing is Parker's interaction with us.  Old Parker was a very happy, active, verbal child with dimples on both cheeks that showed when he smiled.  He always wanted to be out of confinement, in someone's arms or just free.  Now Parker prefers laying in his bed and sleeping in a darkened room most of the day.  When we pick him up he cries as if he is in pain and that cry is the extent of his verbal communication.  We have not seen his dimples in a month.  His countenance seems sullen, almost grumpy at some times-- as if he is angry at us for praying him back to us.  At good points he looks like he is smirking, on the brink of a grin, but we still wait.

Abby can express many things verbally in child-like innocence: "I can't believe that Parker is home" or "I miss his smile and his blue eyes". I  can sometimes let go of things by writing them down-- I was determined to skip a day of writing something yesterday but I feel better when I write something.  Renee internalizes most everything. 

We are trying to celebrate along the way as we have found by not doing so we will certainly find some reason to forget the joy that we feel, when we feel it. That has been an important part in avoiding letting sadness overwhelm and infiltrate to the point of despair.

Our burdens are our own to carry and they are appropriately weighted to us.  We remind ourselves to be less critical of others.  We know that many challenges lie deep within and will typically have no external sign-- appearances mean very little-- but the person who carries them knows them intimately.  Each of us has burdens to carry and sometimes that will mean that we can't shoulder much of someone else's load  for a period of time-- this is probably ok as long as when that period is past we strive to remember and be more actively compassionate. 

 

In perfect, logical reasoning we know that the burdens of our family, of Parker and his parents, are minor compared to others.  An unsmiling child seems almost benign as I reflect on one of the children at the Garches facility.  Last Friday my attention was unwillingly drawn to her as she lay there in the large open hall where we waited to meet with the doctors. She was the only child in the room lying in one of the four beds for day patients.  Her hair was done lovingly in two pigtails framing her clean round face. At the foot of her bed was a 'hello kitty' backpack and a very sophisticated wheelchair which had been decorated with sparkles and pink by a loving parent or caregiver.  She somehow exuded a sense of awareness and a spirit of joy. She could smile and she did smile at anyone who would look at her or passed by.  As she smiled she would lift her eyebrows and make very pronounced facial expressions; from any external sign she could move nothing else. For those who stopped to talk to her she would make some effort of talking although her lips did not move as she would make the sounds through the tube that protruded from her throat.  Once in a while she would look my way and smile. On that day, it was difficult for me to smile back.

First full day home

Today was a good day for us.

Penelope was already asleep when Parker came home so their reunion had to wait until this morning. As they sat for breakfast together we think that we may have seen the first inkling of him smiling but we were so excited that he quickly went back to his determined stare.  

Later in the morning  PJ started crying in the bouncy chair and P-Lo tried to climb up into the chair with him almost as if she was trying to comfort him.  In a world where we are less inclined to believe that there is anything left to chance, we wonder if these two weren't sent together to take care of each other.  

We were concerned that we would be saddened by the differences in ability but it is actually good for us to see a real daily benchmark to see what he should be capable of so we can work on that with him.  It is also clear that while Parker has spent the last month mostly lying in a hospital bed, Penelope has progressed significantly in her motor skills.

Our first visit to Garches was at 11 AM this morning.  It is about 20-25 minutes by car to the west of Paris, past St. Cloud on the same exit as Versailles.  As with Necker it is more of a campus of hospital buildings but unlike Necker it has much more green space and trees and is, in general, more open and light.

We first met with Chantal, the social worker who explained to us all of the financial support and help that we have available to us.  I wont go into detail but we are starting rehabilitation after walking out of the hospital paying nothing.  In short, I am beginning to get back a big chunk of the roughly 23% of my salary we have been paying the social system here these past years.

Afterwards, we were shown the therapy room in full action.  There were about a dozen children with various limitations working with different nurses and therapists.  We were again reminded of how blessed we are to have Parker with the level of capabilities he has already at this point.

We then met with the two doctors, Susanna Quijano  and Veronique Coudert, who run the facility.  It was fairly informal, almost casual and they spent almost an hour talking to us without giving us any feeling of time pressure.  They were very interested in having our opinion on what we wanted to do and both independently expressed the opinion that most children at Parker's age re-educate themselves almost naturally.  We worked out that we would target four afternoons at the hospital for the first week and see how that went and adjust at the end of the week as needed.  Thursday we will switch the afternoon  for the morning so they can do blood work and check his anti-convulsion medication level.  They will also manage the contacts to make sure we get the MRIs and CT scans that we need for the various check-ups and the cochlear implant surgery.

Then, the nurses introduced themselves and we went home around 1:30PM.  It felt a world away from the feeling of imprisonment at Necker and they made us feel like everything was going to be just fine-- it was refreshing.

Renee then came home and took a nap while Parker lay on her chest and Rachael watched Penelope. She was in heaven with the sun shining outside and her sweet baby boy in her loving arms.

We are slowly integrating back into a normal family life, cuddling the kids, reading to them in bed and just being together.  We are looking forward to a weekend where we can just hang-out, walk to the park, watch a show and sleep. Renee and I both feel physically exhausted.  Though our our bodies have remained amazingly healthy these past several weeks, we are ready for a recuperative rest.

PARKER CAME HOME TODAY

After 25 days of having our hearts stretched to the point of breaking between our apartment in the 17th district and the hospital in the 15th district, tonight Renee and I, Abigail, Hannah, Axelle, Penelope and Parker are all under one roof, together. Home is very, very good.

We first got a hint that he might be leaving as we kissed him goodbye last night. The nurse 'reminded' us we were leaving tomorrow-- to which we replied: of course, what time? He said that the doctors would have to tell us the next day. Not having anything official we didn't want to say anything for fear the information was erroneous.

This morning the admissions office asked me how we would like to transport him to Garches, I responded: we could drive him, what time? She said that that would depend on when Garches could accept him. We called Garches and asked if there was something in the afternoon, the earliest they could get us in was tomorrow at 11 AM.

An intern finally informed us at 10:30AM that we would be checking out this afternoon. At 5:00 PM this sunny Thursday, Parker left Necker. We felt compelled to stop by the ICU to say good-bye. Dr. Oualha was out but Gaelle was there and was overjoyed that we had stopped by--and that we were leaving so soon.

As we were not sure, didn't believe we were leaving, we didn't tell anyone until we got home. Today was a general strike in France, on top of that there was a bomb threat on the Champs Elysess so between the protester marches, police forces and increased car traffic, the drive home was long and anxious. Parker finally arrived at 8 PM. The girls keep coming to tell me how happy they are; Axelle is confused and keeps referring to him as 'Penelopeep'.

We are off to Garches tomorrow, it is a day facility so Parker will come home at night. We will have a better concept of what it entails tomorrow.

We are looking forward to a somewhat normal existence and integrating into that part of the human race that doesn't burst into tears when someone asks "how's it going".

I will also stop sending e-mail updates. I started putting the updates in blog format and am comitted to tracking PJ's progress there-- a lesson I have learned is that I don't often recognize the many blessings I have been given but as I look back over the day to try and record it, God's hand becomes evident in so many ways. No one need feel compelled to sign in but the link is below and I have included some photos.
http://parkerupdate.blogspot.com/

Our enlarged hearts are now filled with a profound sense of gratitude. For those who prayed for us and with us, for those who supported us, helped us, for the medical staff and all their efforts. Although often we viewed the medical staff as a bit harsh, when Dr Emmannuelle from Neurology discharged us today, we thanked her for speeding up the process. Her eyes welled-up with tears and her voice cracked as she recalled that in the beginning it was not hopeful for Parker. We were only in her direct care for two days but she had visited the ICU in those first few days and had been following his case over the past 4 weeks. She has always been very discreet but was instrumental in getting us through the last hurdles.

For all this and after all else that could be done we are thankful to God. There is a big, dark, scary space where the doctors tell you they have done all they can do and even the most brilliant of them recognize that things are out of their control. In that space some find nothing but despair-- after searching, we found this space filled with God.

I have thought of the the ten lepers who were healed by Christ and how one returned to thank him. So many things we have asked-- so much he has provided, I am not sure what measure of thanks will be enough.

There are trials ahead-- but everyone has trials ahead-- there is some solace for us in knowing what some of those trials will be.

While your prayers and comfort have been so fully received, we recognize so many others who are in need and feel ourselves greedy to have required so much. If you only have one prayer left for us, please make it one of thanks.

Parker update March 18

Today was a good day for us.

We got word that Parker has been accepted to the facility in Garches. There is an administrative procedure to go through where we have to meet with them first before he can be transferred out of the hospital. I called immediately and set up an appointment for next Monday. We are trying to work through ways we can advance this.

Parker's first room-mate moved out early this morning. His new room-mate is a girl Hannah's age named Hawa whose family is from Mali. She has night seizures. She has a twin brother, is very energetic but cute. I don't believe that she has stopped talking since we have seen her and she makes typing a little bit difficult. As soon as she was in her bed and forced to lie still for 3 minutes she was asleep.

The doctor from Garches was at Necker in the afternoon and visited Parker. Renee reiterated the fact that we would like to leave sooner rather than later and she told us she would work on it. She was very positive about the progress that he has made already.

They took out the iv line in his right hand this afternoon and he now has full use of both of his hands. They took the bandage off of his head from the shunt surgery-- he has 8 stitches. There is one bandage left on his stomach.

He has two different antibiotics three times a day. He is down to one anti-convulsion medication three times a day-- all taken orally.

The physical therapist works with him for 30 minutes or so a day. The psych-motor therapist, Clemence, worked with Parker today as well. He seems to respond to Clemence and their sessions together-- especially the hammock swinging.

We have gotten the feeling that many other parents content themselves to letting the hospital system do whatever they think is necessary for however long it takes. While we don't pretend to have all of the answers we ask a lot of questions and have tried to make it clear that we want to be involved in the process and our son to come home as soon as possible, even if that means we have to take over some nursing duties. We are repeating this often--- we really do not want to spend another weekend in the hospital.

Parker update March 17

Today was good for Parker but we are getting increasingly anxious to leave Necker.

Parker has one bandage on his head now and one on his stomach. He will have his first set of scars.

The neuro-surgeon wants to have a check-up with him in two months, and he will have to have another MRI prior to that check up.

Renee worked with him this morning and he seems to be remembering his reflex of how to sit up by bracing his hands. He doesn't hold it for more than a half a second but we are encouraged.

He is attached to nothing except his pacifier. He still has an iv line in his right hand but it is not hooked up to a machine and he has no iv medications.. We can walk around freely with him. Three weeks ago he had 5 ties that supported life: breathing tube, feeding tube, central line, peripheral iv, urinary catheter; and 5 that monitored life: oxygenation level, heart rate, respiration, brain activity, blood pressure. Now it is just God sustaining his life and all of us monitoring.

We moved to Neurology in the afternoon. It is in the same building as the USC, a floor down from where we were before. The atmosphere is much more casual, there is a tv in the room, a telephone, visits by his sisters are allowed. For the first time in 24 days, he is sharing a room with someone else; a little girl who is 4 months old-- her twin died in utero at 3 months. The family is Northern African and speak mostly Arabic amongst themselves while we speak English. We converse with them in French. The little girl cries quite a bit which is hard on us but Parker doesn't seem to mind. The family is very kind and after two weeks here are going home to Angouleme (southwest France) tomorrow.

We feel like we are at the end stage of the hospitalization process-- the part where you are not supposed to scratch the wound but it is almost unbearable not to. We have focused our prayers on the exit strategy now. The intern informed us that our file is with the physical therapy facility in Garches, a suburb to the west of Paris. It is a day clinic so PJ would come home at night. We should find out tomorrow if he is accepted there.
If not we are working with our extremely helpful and concerned Pediatrician, Dr Robin, on other options that will allow us to leave the hospital while still assuring that he gets the therapy he needs. This is the part of French medical system that becomes tricky as we don't really know what our options are and how much of the treatment plan we can take/should take on ourselves.

Small hurdles to jump over but even the small ones become harder at the end of the lap-- even if we are not near the end of the race.

Parker update March 16

Today was a good day for us.

Parker got transferred to a new bedroom again. We are still in Neuro-Surgery, about 100 ft from where we were, but this wing is much more casual with visiting hours and what we can feed him. They also removed his blood oxygenation monitor so he is no longer attached to any constant monitoring equipment-- they take his vitals every six hours or so.

They have stopped the morphine and he finished one of his iv antibiotics today--one more left. He still has two other antibiotics and his anti-convulsion medication which are taken orally.

The neuro-surgeon, Dr Puget, came by this evening accompanied by several other intern neuro-surgeons (they seem to travel in a pack). She has always been very serious and cautious but was smiling and casual tonight.

Dr. Puget said she examined him earlier and the incision looks great and it looks like it is healing well. She also informed us that the scan showed the shunt placement was good and seemed to be functioning well as it had already reduced the liquid in his brain. She also asked the nurse to take out the "extra" iv in his left foot-- he still has his bear-paw.

Although we arrived in a new room today, they have scheduled him to move to Neurology tomorrow. For the past two weeks we have understood that Neurology was our last stop at Necker. We don't really know how long we have to stay there and we know that we will be back in hospitals and clinics for some time in the future but the feeling of being one step away from going home has brightened our outlook considerably. Things change quickly here and the bed they have for us could be filled but we are cautiously thrilled with the prospect.

From the very first Sunday when I drove the Vespa to the hospital, the path we take is pretty straight-forward and consistent with a lot of one-way roads past major monuments with signs pointing you to the hospital as you get to the left bank of the Seine. It is mostly downhill so that even when we have come separately one of us can take the rental bicycles (Velib) without much effort.

The ride home was always more challenging. We haven't spent much time previously in this part of Paris and we would get lost pretty consistently coming out of the hospital trying to get over to the right bank. Sometimes we would find a small road with a lot of speed bumps that would test the limits of our heavily laden scooter and even when we would make it across the river we would end up coming up to the wrong way on a one way street and have to choose left or right. We consciously avoided the Champs Elysees and it's crowds of people and cars, afraid of our ability to react to eager tourists wanting to get that perfect photo by backing up into the middle of the street.

Whenever we would finally get a direct view in front of us of the Arc de Triomphe we were calmed a bit as we knew the road from there.

For the last couple of nights we have followed pretty much the same path home. While it is not as direct or fast as the one that took us here (and I still would not want to ride the bicycle up the hill) the feeling and frustration of not knowing the way back home are mostly gone.

Parker update March 15

Today was a good day for us.

Parker slept well and ate some carrot puree along with his bottle and is keeping everything down. They are not monitoring his intake as much and are trying to get him close to his pre-hospitalisation eating pattern.

He was more active and attentive today than he had been since the surgery; he grabs his toes and reaches for things.

He complains when we move his head and we have not been working his neck the past two days but we are back to holding him fairly constantly.

They changed his head bandage late in the afternoon. As it is a sterile procedure we had to leave the room. When we came back the bandage-helmet was gone and he has two large bandages on the right side of his head. The nurses said the stitches look clean with no sign of infection.

With his restrictive head bandage gone he was moving his head back and forth more vigorously. He seems to be able to hold his neck- although with pain-- he cries louder now.

Last night Abby came to sleep with us as she had a nightmare that we gave all the girls away to different families and just kept Parker. Abby has always been very close to Parker, after his birth she basically split the family with herself and Parker allocated to dad's team with Hannah and Penelope to mom's team-- Axelle is a bit of a free agent. We gave Abby the option of going to church today or staying home. She said at church everyone asked her about Parker and she was too sad because she didn't know what to say to people. She dressed up in her Sunday clothes and spent the morning taking care of Penelope. She has been very strong through this and is growing as well.

Today was an atypical Sunday for our church services. Every six months or so, the 8 congregations of our church on the western part of Paris and suburbs meet together in Versailles for a conference. Over the years, when the weather was good, we have had a tradition that after the Sunday morning meeting we would have a picnic by the canals behind the Chateau with our friends and fellow church-goers. Today was the perfect day for that picnic.

We were reminded how much we love Spring in Paris. It is not a consistent string of warm and sunny days; rather it is several chilly, rainy days interrupted by a day or two of a stunning baby blue sky. Everyone still wears coats, sometimes heavy ones, but these are often left open and sometimes they wear lighter jackets. The trees are still bare but you know inherently that they are alive. Once in a while you catch the hint of blossoms in the air. While anyone can appreciate that beauty, those of us who have lived through the dark Parisian winters have perhaps a heightened sense of the renewal waiting for us.

We had wanted very much to attend the conference in Versailles, be inspired by the messages in our heightened state of spiritual awareness, thank people who had prayed and fasted with us, lay lazily on the grass and joke with friends while the kids wandered a little too close to the swans on the canals, show everyone our perfectly healed son.

That didn't happen today but we are filled with renewed hope that for the conference in the Autumn, the time of harvest and our other favorite season in France, we will be there and it will all be more meaningful.

Parker update March 14

Today was a recuperating day for us.

Parker had no appetite this morning but they were not concerned and thankfully did not put a feeding tube back in. They allow us to hold him but today he seemed to prefer not being moved around as much this morning.

Early in the afternoon they took him to get a CT scan and a head x-ray to check the placement of the shunt. For the previous two scans he had been heavily sedated. Now that he is awake they cocooned him again. He was relatively calm-- he is now used to machines around him.

Yesterday the speech therapist had recommended that we continue to talk to him while looking him in the eye as it would help him progress his language ability. I spent about 10 minutes telling Parker of details of my morning with his sisters and he kept his eyes firmly focused on mine the whole time.

He seems very tired but not sleepy today-- doctors say this is natural for post-operation. The ICU put a pad under his right hand where the iv is as a way to keep the iv in place. This limits the use of his digits on that hand and it reminds us of a bear trying to paw at different toys or his pacifier.

We tested some basic communication with him. He would hold up the pacifier with his left hand I would open my mouth and made a sucking motion. After processing for a moment he pushed it towards my mouth. We successfully repeated this a couple of times. Not sure if this means anything at all neurologically but it felt like communication to us.

The surgical ICU was a bit of no-man's land. Our interactions with the staff there were brief and formal but the overall environment was fairly hostile. I assume that it is the same in all situations where there are multiple specialties looking after a patient but there is no one person, doctor or nurse, which follows him through each service. In addition each service seems to have their own protocol-- including visiting hours. As such we have to build up a rapport with the staff in each new location. It is a tiring process when we are already tired. The USC was easier as we knew Dr. Heilbrunner-she was the first doctor we met here- for surgical ICU we were foreigners-- and just passing through.

In surgical ICU visiting hours are after 1PM up until 8PM--this didn't work for us and we expressed this repeatedly in the most polite, composed way we could. The nurses listened but noted they were not empowered to make exceptions. When we finally spoke to the docter on call, he arranged our transfer to neuro-surgery, some 20 physical steps away from the ICU but seems very different in terms of environment.

The room in neuro-surgery feels like a traditional hospital room. There is a television, closets, a closed bathroom, a chair that reclines and doors that close. There are no blue blouses, no knocking on locked doors to ask to be allowed to see your child. It is still the hospital but our stress level has dropped significantly since arriving here-- we still need to negotiate visiting hours. It is unclear how long we will be staying here or where we will be going.

Tomorrow marks the start of Parker's fourth week in the hospital. This is the 21st 'update' that we have sent out. It has become ritualistic. I write the updates while we sit in the room with Parker-- it is hard for me to write them at home or outside or in the waiting room. I then pass the Blackberry to Renee who corrects and suggests things to add or take out. Sometimes she reads then softly says "perfect". Sometimes, tonight, she cries and wishes that we didn't have to send an update. I push the send button just as we leave his room for the night.

The send list has expanded a little each day. I have no desire to know how many people are on the list or how many of those send it on to other people as it is terrifying to think of sharing such intimate, soul-bearing thoughts and experiences with friends-- strangers I can accept easier. Gradually more terrifying things made the update process easier, then necessary, then cathartic. There is much that goes un-shared-- too close, too difficult to express, too sacred. Still, the update has been necessary for us to communicate some level of information to our loved ones and vital for Renee and I to celebrate our wins and grieve our losses.

I have wanted to stop writing the update so many times-- wanted whole-heartedly to write that he is completely healed, thank you now feel free to resume your normal lives and we will ours. Wanted to stop writing because some days we felt inspired, uplifted, strong; some days we didn't. Three weeks was the maximum we thought we would be at Necker. Yet we remain for a fourth with no definite date in the future to leave and assured that even that anxiously hoped-for event does not provide the happily-ever-after. The updates will continue, I am not sure how long or how frequent they will be-- probably daily for a while but at some point typing for two hours with my thumbs will become impractical and we will be doing other things than sitting in a hospital room most of the day.

Parker update March 13

Today was long, frustrating, difficult... but essentially good.

Happily Parker's temperature has been normal for a couple of days so there were no counter-indications for the surgery.

They left us alone in the room for most of the morning just holding him.

The speech therapist and ENT psychologist both came in and discussed cochlear implants with us. The bilingual issue is going to pose a challenge in the system at the beginning but we are looking at ways to work through this. The speech therapist is very optimistic about the prospects of him being able to speak and hear, if not normally at least at a level that most people won't notice it. This will depend in large measure on what damage has been done to the communication centers in the brain which we won't know for a very long time.

After one week in the USC we are now off to new places. We felt a lot less attachment to the waiting place and the staff there as our interactions were much more limited. We packed up all of our posters on the wall in a black backpack and a polka-dot tote, took Parker's car seat filled with our coats and helmets and walked Parker over to the operating bloc. He was nestled in a baby stroller with his pacifier and they let Mehdi-bunny accompany him as well. They even unhooked his vital signs monitoring equipment so he was completely unattached for about 40 minutes.

He was scheduled for his shunt surgery at 12 but they didn't take him in until 1:35PM. They indicated that the surgery would take 25 minutes. After a very long 2 hours and 15 minutes they allowed us in the recovery room. It was disorienting at first as there are twelve beds or cribs around the room with various aged children in them on top of that we weren't really sure what he would look like or what state he would be in. We saw him across the room with a full head bandage -- like an american football helmet with a chin strap but no face guard. He was very agitated and alert, grabbing at his tubes and lines and sobbing his hushed cry. He calmed down a bit once Renee put her hands on him and we gave him his pacifier. We then started to try and figure out which variation of the surgery had happened. In addition to the head bandage he has a bandage on his stomach so we supposed that the internal shunt was implanted. Later we noted a tube under his skin running down his chest. While disconcerting to see him in pain, Renee and I both noted that he seemed to have more movement, and range of movement than before. He also has an iv in his right hand and right foot-- Renee says this is a good thing as they were considering putting a central line back in. Refreshingly, he still has no tubes going to his face.

The recovery room is not a happy place. Various children with various ailments all waking up, some to find one or both parents there, some finding themselves alone. There is a sign on the door asking parents to respect the privacy of the other patients, but there are no curtains or doors, everyone is hooked up to a machine filled with children crying. For that moment I was glad that PJ could not hear. The two hours in the hall waiting for the surgery seemed short in comparison- it is a place where I will need to better prepare before our return.

When we left the recovery room we thought we were going to the neuro-surgery ward upon arriving there they re-directed us to surgical ICU (previously we were in the medical ICU). It is difficult to put the blue blouse on again, it is also difficult that we can no longer hold him.

Oddly, even though we are in the ICU they are only monitoring his oxygen level and blood pressure -- up to this point they have monitored his heart rate and respirations as well.

We finally met with the neuro-surgeons just before 8 PM (they had been very busy) and they let us know that all went very well and the build-up in the brain was just liquid. They will check the shunt placement tomorrow with the CT scan and they left 5 cm behind the ear for the cochlear implant surgeon. She also told us that we were in the ICU mostly because there is a shortage of beds in neuro-surgery and they share the same floor.

After not eating for 10 hours, having limited pain meds and the effects of the surgery and anesthesia wearing off--he was a very upset little boy tonight to the point that he ended up vomiting mucous a few times. It is difficult for all of us. At one point we reminded ourselves that we could see the pain because he was awake and could cry, and cough, and vomit-- and this was a good thing- a hard thing- but a good thing.

Parker is pushing us along. I am not sure if we consider we are enduring this "well" yet but we are at least keeping up the fight and learning that endurance takes mental, spiritual and physical effort.

Parker update March 12

Parker had a good, rest-filled day today and is gearing us up for tomorrow.

His fever is completely gone and he regains some of his strength and movements every day.

He is not putting on much weight and is not overly interested in eating. This was somewhat typical for him pre-meningitis as he has always been the smaller twin. They let him try pudding and pureed vegetables today but neither was a big success.

The speech therapist came and talked to us about what we could look forward to in terms of support and answer some questions. We are working through what it would mean to us to have him learning French as a primary language and we are all gearing up to learn sign language.

A psych-motor specialist that came to work with him a bit today, we didn't really know what she was supposed to do compared to the physical therapist but as she explained it she is here to help find things that Parker likes to do. She and Renee spent a couple of minutes swinging him in a hammock made from bed sheets.

The girls were excited to come by and see their brother tonight. I picked them up from school and they decided we would take the bus because the metro has too many germs. They were also anxious to show off the one phrase in sign language that they already knew-- 'I love you'. Hannah kept confusing the U with a V but I know he got the message.

Somewhat realizing the gravity of the fact that he was going in for brain surgery tomorrow, we asked Dave Arnold and Dave Daniel to come by and give Parker a blessing. We were all comforted and hopeful that this surgery will bring progress.

He is now sleeping with his tussled blond hair seeming to be shifting a little bit back to blond. He looks like a much older boy than he did three weeks ago.

We continue to be uplifted by those who have trodden difficult paths before but yet find strength to reach out to us and offer support.

I think the hardest part for us is realizing how we have been so blind to the suffering and pain that others have been through-- preferring perhaps to convince ourselves that somehow everyone elses lives have been free from sorrow we go through our lives with eyes nearly closed so that we won't feel obligated to reach out or lend comfort. Perhaps there is something about travelling those dark paths of doubt that make them desire, perhaps need, to reach out to others and provide comfort as they may have sought, and hopefully found, the same on their own journeys.

A dear friend, of a dear friend sent us an article which had the following quote:

"When, for the moment, we ourselves are not being stretched on a particular cross, we ought to be at the foot of someone else's—full of empathy and proffering spiritual refreshment."

We all have our particular crosses to bear, no one will make it through life without some level of challenge, disappointment, suffering. Renee and I have been more public in our dealing with challenge yet I hope that we learn to better perceive those around us, close to us, who have very personal, private crosses to bear and that somehow, we can help them through their suffering.

Parker update March 11

Parker had a good day today, and we are trying to catch up to him.

He no longer has a temperature and he still has no tubes attached to him. This means that his continued dose of antibiotics has to be administered intra-muscular and blood draws usually come from his heal. We also give him a couple of other medicines orally each day.

PJ is completely off of valium and morphine is down to just a few drops a day.

The physical therapist worked with him today and was very happy with his progress. His neck is getting stronger each day.

Renee had a visit from the ENT psychologist today-- I am not sure that this is common in the US but it seems every service has a psychologist assigned to it.

We also met with the Neuro-surgeon tonight in the new bad news room. The MRI showed that the liquid includes some blood in it and they are concerned that it may be layering a bit. The goal would be to put an internal shunt in which would allow any further liquid to drain off until the brain pushes back to the cranium. If the liquid is too thick they may put an external shunt-- which has a shorter tube and would be easier to unblock. If the liquid doesn't flow at all, they will cut a little chunk of the cranium, scrape out the build-up, and put the cranium piece back in. Renee and I calm with all this. His surgery is scheduled for Friday mid-day and they are going to let the girls come by tomorrow to see him before he goes through re-tube.

They are looking to do another MRI and CT scan on Saturday to check the positioning of the shunt and also check the placement for the potential cochlear implant surgery.

After the hard realities of yesterday we are trying to regroup our strength, allow our hearts be heavy for a moment, dry our eyes, adjust our dreams and look forward to a new paradigm.

In the new bad news room there are no Matisse posters hanging on the walls. Leaning on the table opposite the suede leather couch where we sit there is a framed poster, covering a framed painting both waiting to be hung. The visible picture is of jagged snow-capped mountains with clouds sifting through them. While I noticed these vaguely yesterday today I wondered aloud to Renee what the painting behind the mountain poster was. She said, with raised eyebrows incredulously, "More mountains, I looked yesterday".

In Haiti there is a proverb that says 'behind mountains, other mountains'. Our trials of yesterday will not be the only ones we have but we are trying to reach for each summit as they come, some being a little bit more difficult than others.

I picked up my Dr Seuss book with Axelle and Hannah the other morning to refresh my memory of the waiting place. As I read the rest of the book (through teared eyes that 3 and 5 year-old girls don't quite understand) I was so grateful that we have never had to go to the lonely place. We have had so much support and love shown to us and typically when I send out a particularly difficult e-mail that love and support becomes more evident.

At 3AM this morning, as I lie awake between a state of being ashamed of myself for not being stronger- blathering about like deafness was the end of the world-and feeling guilty that somehow I had let down so many people that had faith in us- in Parker's recovery- I received an e-mail which included a wonderful parable of a mother of a child with down syndrome which I found particularly heartening:

"Welcome to Holland."

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

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.

Parker update March 10

Today was a long, tough day for us. We have now been introduced to the bad news room at the waiting place.

Renee was on first shift. Upon arrival at the hospital she noted his IV was gone-- unhappily they informed her that it was not functioning and that they would be putting it back in.

His neck seems to be getting stronger and he seems to be in less pain when we pick him up. He can do more physically each day and he continues to be curious about his surroundings.

We had planned an auditory test at 1PM but they ended up having a slot open in radiology for an MRI. For the first time in 16 days Parker went outside as a nurses aide pushed him in a jog stroller across the road to radiology while I carried the monitor closely behind trying to keep the wires from getting tangled in the wheels.

For the MRI they placed Parker on a flat board and then wrapped him onto the board with gauze until only the top of his head and nose was showing through. They then picked up the board with our little cocoon boy and hauled it into the machine while they took another cocoon out. Once the door is shut there are a lot of noises that sound like someone is trying--unsuccessfully- to find the right radio station while on full volume. Luckily the nurse tech was very cheery and joked with us quite a bit-- otherwise we could have been a lot more apprehensive.

After the MRI we went for the auditory test-- which was in another building. While we have come to be very fond of the competent personnel at Necker, and the equipment seems appropriate, the facilities are less than optimal. Two-hundred year-old buildings which seem to have been last redone sometime in the 1970s do not provide a feeling of "modern".

The auditory test (ABR) confirmed our deep suspicions; Parker tested completely deaf in both ears.

The doctors are suggesting cochlear implants which should allow him some type of hearing but they suggested doing this quickly as there is a risk of ossification--that the membranes become brittle and the implants become impossible. We are trying to grapple with what that will mean for him.

Following the auditory test, we went to yet another building for an echo-cardiogram. As we walked to the other building the rain fell briefly and the wind blew stiffly in our face. We bundled Parker a little tighter in his blanket to try and protect him, still trailing the monitor in the other hand. From this time on, Renee pushed the jog stroller.

The echo-cardiogram showed no abnormalities.

We then went back to the radiology building for ultra sound on his abdomen, head and thigh (where he previously had a thrombosis).

His circulation and organs seem to be fine. There are some nodes which they indicated as normal given the infection. There is still some liquid in the cranium.

The results of the MRI confirmed the cranium liquid, that it may have slightly increased and also noted several small lesions on the brain in different locations.

In the new bad news room we had Dr Claire, Dr Halfen, two ENT doctors and a Neurologist. The ENT's are confident that they can provide some sense of hearing but it is unclear whether or not the communication centers in the brain will allow him to be able to speak. The neuro-surgeons are discussing his case in their staff meeting tomorrow but they will likely either do a new puncture to relieve the liquid or put in a shunt in the next two days. They have indicated that he will be in the hospital for at least a week and then will need to transfer him to a therapy center.

When we came back from the new bad news room, he was sleeping beautifully in his bed. We saw that the feeding tube was now gone and, having never been able to get an IV in, no more life supporting/sustaining ties bind him to his bed. That phase is over.

Yesterday, I really wanted some answers, today I miss the questions. Ignorance is not bliss and in the end we all have to learn what we have to learn, but there is a certain level of comfort in imagining that all options are still open.

Did God hear Christ? As He suffered in the garden, was whipped, flogged; as the nails pierced through him, as he hung on the cross; did Jesus cry out? Did God hear Him? Scriptures tell us that God hid his face -- that he did not, could not see His only begotten son go through a part of the agony-- but could he block the sound? Did Jesus' mothers watch?

For 90 minutes the nurses, then the doctor, tried 11 times to get an IV into Parker without success. I could not watch-- Renee stayed by his side. As I sat in the hallway, thankful that Parker's voice was still at the whimper stage, I thought of my 7 year-old niece Emma who has spina bifida, does not have use of her legs and has been in the hospital many times. The most recent time they couldn't find a good IV line, after 9 tries, my sister Stephanie had to leave and waited in the hall while she only heard the cries of her daughter.

Sight is a gift that comes with a self-regulating mechanism that allows us to block out what we don't want to see; hearing, not the same. Sight allows us to interpret the environment around us -- we pull information with our eyes. Hearing is pushed on us-- sometimes we can choose not to understand -- the pained cry of a child, any child... our child, is difficult to deny.

Maybe Renee and I needed daily reminders of the lessons we are learning. So easily we forget what we have learned today. So many fears have suddenly rushed back to us. My perfect little boy hears nothing-that is the reality of today. He is still my perfect little boy but now he will have external signs which others will interpret as imperfections which are not his fault.

10 days ago when my sister Stephanie told Emma that Parker, like her, was going to get a shunt, she responded naturally that it was ok and that one day Jesus would heal him, just like he was going to heal her.

We keep our faith-- not the cheerful, child-like faith of my niece-- the faith that Jesus showed, the faith that compensation comes through suffering and work and trial. Because He suffered we hold firmly, desperately, to knowledge of a resurrection to perfect restoration. That He could cry out and ask the question 'if there was another way?' assures me that I too can cry out and ask.

Parker update March 9

Today was a good day for us.

Parker retains his fever but they think it could be related to inflammation in his head still healing as opposed to an infection.

He is doing better at holding his head up -- but still with pain.

He has an auditory nerve test scheduled for tomorrow at 1PM. We are a bit nervous about this as one of the major potential side effects is hearing loss and we have not seen him be overtly responsive to sounds since he has been awake.

I started out this morning alone with Parker at the hospital in hopeful anticipation that the weekend was over and things would start happening again. It didn't seem that was on his treatment plan for the morning and by the time Renee arrived at 11 AM I was getting anxious to progress, starting to pace the halls, call doctors, start making progress goals for PJ, looking at mitigating potential future scenarios, etc. At some time during this Renee decided it would be good for me to go back to work.

While for the first 2 weeks it was essential for us to both be here together as much as possible, we both felt that we were in a good enough place that we could rotate hospital shifts so we could gradually resume some of our former responsibilities.

My work has been amazing through all of this and have basically told me to come back when I wanted to come back and if I needed to come back partially-- they would adjust. It was nice to get outside the sterile hospital environment for a couple of hours, to think about other things; different things than pneumoccocal meningitis and its side effects. Re-connect with colleagues who have been supporting other unnoticed burdens while also sending moral support. Work is a good distraction from life.

While I was gone, Renee and PJ were visited by the "Rire Medecin" a group of singing clowns that roam the hospital and provide a bit of relief to children and families. After they left Renee wrote this tender note on a the back of one of the drawings Abby made for Parker:

"2 clowns came by and sang to my soul today. 'Il fait beau, petit poussin' pour Parker. It was soooo beautiful and touching and healing. I cried. I cried for my stress, my worry, exhaustion. They shut the door and I cried some more. 'Lache' she said to me, 'Lache'. I cried for my son- for his pain, for his suffering- for his choice. I cried for God. I cried for His love, for His grace, for His strength... to me, to you, for all of us. Our souls have been torn-no- ripped wide open- exposed- then filled up with hope & faith & prayers. All of mine, and Johns and all of our dear, dear loving friends'. We have been strengthened - by our own resolve... but carried as a couple- as a family- as a unit- by all of your quick, un-judging, raw expressions of love and concern & prayers. Today we celebrate that with earnest. I realize that the sickness is three weeks long for Parker... and for us.

Week one -- Survive
Week two -- Endure
Week three -- Heal

We are looking at week three ---- and feeling the healing.

'Il fait beau, petit poussin, Parker... Il fait beau.' "

Parker update March 8

Today was Sunday, a day of rest for us.

After yesterday’s challenges we decided we needed to give Parker a bit of a break— we needed it too.

PJ was responsive today, he has piercing, bright, blue eyes-- a gift from his mother -- and they seemed to be seeking his environment all day today.

His temperature seems to be controlled by the Doliprane (Tylenol-equivalent) but the diarrhea continues.  They don’t have a clear idea of what is causing the fever and we are trying to be patient waiting for them to work through the different possibilities.

They let him try semi-solid foods this afternoon—Renee spoon-fed him apple-pear sauce and he ate half of the little jar before we decided that he needed to have some milk as we didn’t want him to lose his appetite.  They have also moved his milk intake allowance up from 100 to 120 ccs and his weight seems to be slowly coming back.

Florence from the ICU dropped by to visit Parker and helped us finish his bath.  It was good for him to see a friend and she reminded us how far he had come and how excited everyone in the ICU was with the progress he had made and that we shouldn’t expect so much so quickly. It was also a touching, but hard to explain, cultural moment with her as we decided that we would use the informal form of French—it was then that we realized that up to that point she didn’t even know our first names.

The end of the day is always difficult for us— difficult to leave but difficult to stay any longer-- tonight especially so as Parker was clearly agitated and flailing about somewhat wildly.  It is painful to watch and yet reassuring that there is a possibility he could actually fling himself out of his bed. Eventually he calmed down and was resting peacefully.

We decided to take some time today to write down some of the details of how we got here 14 days ago while they are still somewhat vivid.  Although I have had my computer at the hospital for probably the last 10 days with this purpose in mind, I have always found an excuse not to open in up and have preferred using my Blackberry to send out updates.  Part of this is the fact that there is a challenge in blending the narrative of both of our perspectives. Much of this is due to the difficulty of having a look back and being honest with ourselves where we had lacked appropriate judgment—if we had done something differently, if we had recognized the signs earlier, if we hadn’t been so selfish with our time – things may have evolved differently.  Also, I am not sure that I had the courage in putting all this down because for us; this has been an intense emotional, physical and spiritual experience and there is a certain level of fear and difficulty of committing all that to a tangible record.  Another reason is that the events that have happened contain a very real religious aspect for us and I feared that those dear friends and family who do not share our particular set of beliefs would feel that we were trying to push our religion.  We have learned much about our religion but we have also learned that Prayer, Faith, Hope, Charity and Love are not proprietary doctrine to any one religion and these can just as readily be found in people who are essentially non-religious.  So, for whatever reason, today, on this silent Sunday, we feel that we are in a safe enough place to attempt to document the events leading up to our arrival at Necker, hospital for sick children,  without trying to adjust or justify the reality.

The day he got sick was Friday, February 20^th. There was a two-week break from school and Renee, Sarah (our au pair from Arizona who has been re-named Saint Sarah) and the kids were invited to the countryside to stay with our friends, the Quimbrots, at their country house in the town of Saints, an hour east of Paris.  After four days of being separated, I took the day off that Friday and took the train to meet up with them with the plan to spend that day at Disneyland, stay the night in a hotel near there, and then go swimming at the indoor pool on Saturday before returning to Paris Saturday afternoon.  Early in the day Parker seemed fine but as the day progressed he became a bit groggy. Sarah was watching the kids while we went out to dinner and while we were gone Parker woke up screaming with a fever.  We gave him Doliprane and he slept that night but was wheezing with very shallow breaths.  Our three-year-old daughter Axelle also came to bed with us that night complaining of ear-pain.  As our five year-old Hannah had been diagnosed with an ear infection the day before (not uncommon in our house and an unhappy gift passed on by their father) we reasoned that this was likely the cause of all the problems.  The next morning Parker’s fever did not respond to the Doliprane and we decided that swimming was probably not a prudent move and we needed to see a doctor. We packed up and returned to Paris late in the morning. 

Renee called SOS medecins, the roaming house-call physician service that we had used so many times before, and a doctor arrived and looked at Parker and Axelle. Axelle had a burst ear-drum caused by an ear infection and he prescribed antibiotics for her.  For Parker, the doctor looked in his ears and checked for stiffness in his neck (typically a sign of meningitis) but then concluded that he likely had a viral infection which would clear up in a few days.  He was concerned about the risk of dehydration (he had really not eaten or drunk anything since the previous evening) and told us to give him fluids with electrolytes.  He also told us that if the Doliprane didn’t work to alternate with Advil. 

We gave Parker Advil and he slept the entire afternoon.  Sarah noted that he was making some strange noises when he awoke and he looked like he had vomited – but the liquid was clear and was odorless.  Sarah held him with a look of anticipation and concern. I am not sure why but I have an instinctual reflex to avoid hospitals or emergency care both personally and more importantly for our children.  The sense of handing over control of your child into unfamiliar hands without a clear timing of when you will regain control is hard for me to accept. I also tend to trust that the body takes care of the majority of its own sicknesses without external intervention.  At the point where he awoke in a pool of saliva, Renee suspected he might have had a seizure and suggested that we should probably go to the hospital. Needing some comfort, and having previously experienced the difficulty that hospitals in France have with any kind of religious vestiges, we asked a friend and fellow church member who lived nearby, Curtis Stone, if he could come by the house and we could give little Parker a blessing.  Blessings, by those having authority to act in God’s name placing hands upon a persons head, are an important part of our faith for instances where someone is sick or in need of comfort.  We have had a special relationship with Curt and his wife Janet, as when Penelope was sick last summer 8 days after her birth, I was out of town and Curt filled in and gave Penelope a blessing which was very comforting for Renee.  On that Saturday evening his blessing promised Parker that he would be healed and would be blessed to grow up in a home where the power of God was present.  Near the end of the blessing he also added a blessing upon the medical professionals who would be working with Parker that they would be inspired in caring for this little boy.  I am not sure that Curt was aware of the trials that lay ahead for Parker but I remember finding it comforting that he had promised healing but disquieting the reference to medical personnel.  We were reminded of the words of his blessing several times during the first critical days in the ICU and have clung to them in moments of doubt and despair.

That night, we decided to try and re-hydrate him and started giving him drops of the electrolyte-rich fluid by a syringe.  As he slowly began getting more liquid, he eventually could take the bottle and we eventually got him around 200 ccs of liquid.  We debated a bit but finally decided that we would see how he progressed overnight and if there was no improvement we would take him to the emergency room.  That night we had him sleep in our bed with us and observed his shallow respirations through the night.  In the morning he would cry every time we would pick him up or move him and we determined that it was time to take him into the hospital.

Being Sunday morning, we decided that Renee would go to the hospital, and I would take Sarah and the girls to church. Although Necker is the reference hospital in France for sick children, our previous three trips to the emergency room here were not reassuring as the facilities are very old and, as it is a public hospital, there is a lot of demand and long lines.  We instead decided to take him to a hospital that had a children’s emergency room of Notre Dame de Perpetual Secours in Levallois, a suburb of Paris closer to our apartment in the 17^th district.  Renee had packed her backpack for what she envisaged to be a long day of observation and I dropped her and Parker off at the hospital around 9:40 and then drove to Church in down-town Paris.

Renee entered the emergency room and explained the situation to the receptionist and at that point indicated that she suspected he might have had a convulsion the previous evening.  This alarmed her so she relayed the information and within five minutes a nurse was examining him and indicated to the doctor next door that Parker was very limp and he should look at him.  After a very brief examination, the doctor indicated that the soft-spot was bulging and he felt this was a clear sign of meningitis.  The doctor was on the telephone to British Hospital down the street to see if they could get a bed for Parker as they were not set up for anything more than outpatient care.  As they could not guarantee Parker a place immediately they decided to treat him immediately and led Renee and Parker back to a makeshift treatment room and did a lumbar puncture where a large about of liquid was released and Parker seemed slightly relieved.  They then hooked Parker up to an IV to start treating the potential meningitis with antibiotics and steroids.

At some point during this, 10:30 or so, Renee left me a message saying the preliminary diagnosis was meningitis and that it was most likely viral and he could be in the hospital for 2-3 days.  If it was bacterial he could be hospitalized for 2-3 weeks.  We left church quickly after the meetings and didn’t get a chance to talk to Rachael but I did speak with her husband, David, who told me the girls had told them that Parker was sick and he offered to come over in the afternoon to help if I wanted to go to the hospital. 

At the hospital, the doctor was on the telephone with the doctors at Necker and at some point they decided that they needed to transfer Parker directly to them as soon as possible.  The doctor informed Renee of the transfer and asked if she had reached me yet by telephone.  At this stage I had only been getting messages from her but we had not spoken.  As the doctor escorted Renee to the ambulance, he insisted again that she call me and gave her his phone to try but I only got the message.

Finally, when Renee was getting into the ambulance she tried again, I was putting together a pizza for the girls and talking to a friend on the house phone when Renee called me on my cell phone.  She sounded distressed and said that they were being transferred to Necker and I needed to come quickly.  I asked Sarah to finish the pizzas and told her that I needed to go to be with Renee.  As I changed, I noted a phone number my caller id from an unknown cell phone which I called back to find the doctor who transferred Parker.  He indicated that it was serious but somewhat re-assuring in that there was no immediate life-threatening risk but he encouraged me to go quickly to Necker.

As they turned the sirens on the ambulance and began the ride across Paris, the two medics were struggling to get their footing as they continually worked with Parker checking and re-checking his vital signs while Renee sat surreally in a state of shock watching as medicine and equipment would fall to the floor as the ambulance careened around corners.  The drivers and medics would glance at her once in a while with a very non-reassuring look of compassion/pity while Parker’s vital signs seemed to be dropping and they prepared and administered medications.

When they arrived at Necker they immediately took him to the 3^rd floor of the ICU where a team of 15 medical personnel waited in the hallway. As they took possession of Parker Renee felt herself being moved slowly away from the side of her son until at some point she was standing in the entry way trying to listen to what they were saying but not being able to comprehend what was going on.  At several instances they would look over at her with that same look of pity and she could hear them talking about her observing the scene.  One of the aides came and asked her to sit down in the waiting room but Renee could not sit down in a room filled with complete strangers to wait while around the corner they tried to revive Parker’s vital signs so she stood there wedged between the coffee machine and the garbage can with her backpack in one hand and Parker’s car seat in the other. 

As they moved him out of the hallway into the unit, Renee called me again and said I needed to come quickly as she thought Parker might die in the next 10 minutes.  Might die? Up to that point I was busily working to take care of the girls, and get a couple of things organized for the evening under the reassurance that Parker, my little boy, my only boy, was sick, maybe very sick, but he just needed a little medicine.  Might die was not comprehensible to me. I clung to the words that what the doctor told me on the phone was the reality and that Renee was being an overly dramatic mother, but I was starting to feel a sense of urgency that I had not had before.

I texted Rachael to please come over as soon as she could and assured with Sarah that it would be ok if I left her there alone until Rachael came. I got the helmets for the scooter ready, found a map to see roughly where I was going and told Abby that I was going to the hospital and Parker was very sick.  When she questioned whether he would be ok—I couldn’t say – I didn’t know.  I hugged her tightly and told her she had to be a big help to Sarah and Rachael in taking care of her sisters.  I walked out the door as another friend from church; Dave Daniel was coming in the door to drop something off. He could tell I was distressed.  I made it halfway to the scooter and then came back into the house and gave Axelle and Hannah a hug while they watched a show—somewhat oblivious to their teary-eyed father.

Just before 2PM, Renee was returning from admissions as I arrived. The nurses told us that they tried to wait to intubate him until we were there but could not wait for us.  They said we could see him briefly, give him a little kiss and then they would come talk to us as soon as he was stable.  They showed us the locker where we could put the backpack and helmets, how to put on the blue gowns, the mask and wash our hands and then they showed us to the room.  They told us he had been intubated to regulate his breathing and that in addition to the antibiotics and steroids they had started him on sedatives to calm him down.   We had about 30 seconds in the room with him, looking at all the monitors and hearing all the sirens, then we each gave him a kiss on the forehead or cheek and were escorted to the bad news room.  There we waited for about 90 minutes just working through what was going on and what it meant.  Dave Arnold, who in addition to being one of our very good friends is also the Bishop of our church congregation here and an important spiritual guide through all of this, called and asked what we needed but at this stage we could only communicate that it wasn’t going well.

When Doctor Heilbrunner (Claire) and the nurse Nor-Edin finally came to talk to us around 5PM, we provided them a background on Parker and the events that had got us to that point in as much detail as possible.  This is when they told us that he had a very aggressive form of, most likely, pneumococcal meningitis and that they were treating this aggressively.  They also told us that there was the full range of possibilities, full health to death, but they did not have a good idea of the probabilities of this but that the next two days would be critical.  This was a difficult thing for me to hear—I was still hanging to the fact that this couldn’t be happening to us, that the doctor from the previous day was somehow right and that the doctor from that morning told us that it was not life-threatening.  But there, in that instant, mortality was tangible, life became a question and we became fragile.

Despite that sinking gut-punch feeling, we decided quickly on a couple of critical things.  First: we could not do this alone.  In general we like to believe in the notion of self-sufficiency and independence—we can do anything we set our mind to and there is no challenge that we cannot face alone.  We perceive that dependence and seeking for help is weakness and strong people, good people, go it alone.  We determined quickly that this was bigger than us and realized that the concept that God had always encouraged us to strive for was unity—not individualism.  While in other circumstances it would be difficult to swallow our pride and depend on others, there was no logistical way to do otherwise; no way for us to shoulder the whole burden—the stakes were too high.  If people offered to help, we would not, could not, turn them down.

Second: we decided that we needed to do this together. We know that the center of the family unit is a marriage; in our case between one slightly imperfect woman and one very imperfect man. That unit has strengths that can compensate for the individual members’ weaknesses and in retrospect it is clear that neither would have made it through on our own. As part of our newfound willingness to outsource a major part of our responsibilities, we came to the very difficult realization that in order to operate as that unit, one of the responsibilities we would also need to delegate, for a time, was that of our precious girls.  We received blessings of comfort and felt reassurance from God that this was appropriate and they would grow from this experience as well.

Third: we decided that all of this belonged to God.  Whatever the doctors said, whatever the empirical evidence showed, whatever the news was, God could perform miracles.  We had seen them before and maybe ignored them but we were at a point where we wanted and were willing to believe in them again.

At 6PM that Sunday night, we sent an e-mail to the 7 people I had e-mail addresses for on my Blackberry asking them for help and prayers and asking them to forward this along to those who might be willing to assist.  The result was immediate, overwhelming, faith-promoting and life-giving. 

On the very Sunday we came to the hospital and before we even had started to inform people or knew clearly what was going on, Amy Herrick from our church family, brought over Lasagna to take care of  the physical needs of our family somewhat abandoned at home.  She had sensed when I talked to her at church earlier that day that she would be called to help and responded to the call from the Spirit.  She brought the first of many meals (many of them not Lasagna) to assure that the basic care for getting people fed has been sustained in an over-abundant manner each day.

Renee texted her friend Claire Quimbrot, who she had been with the previous week to let her know that if she saw any signs of odd behavior in her kids, react quickly.  Within minutes we were receiving calls and texts from friends and neighbors showing support and wondering how, desperately wanting, to help us in any way they could.  They organized play dates with friends, had their neuro-surgeon friends call us and made us feel loved for who we were and not because of what we had done for them.

When our bishop Dave Arnold got the first e-mail, he was at a meeting with several other members of our church and passed the message to all those around him including the regional leader of our church who immediately organized a fast, asking people to go without food or drink for 24 hours and pray particularly for out little boy.  In response, hundreds of people, from all walks of life and cultural backgrounds in the Paris region did not eat or drink for a period of time as sign of sacrifice to God.

Dave Arnold and Dave Daniel came to the hospital that very night and gave Renee and I blessings of comfort to help us through the trying times.  They promised us strength and counseled us to release much of our burden to the strength of others.  Then they went home and organized all of it so that it would work.

As we sent the first e-mail, people seemed to respond in amazing ways.  Some friends we desperately wanted to contact as they had been through similar challenges somehow got our plea for help and sent us reassurance and strength. People passed the message along to their friends and their churches, and then they passed it along again, and again.

Each day has been a challenge. Each day has brought doubt and fear and worry. This is not a happy joyful experience where we sit back and continually bask in the warm reassurance that everything is going to be fine. We get tired. We get grumpy. We wonder if we are being selfish and requiring too much of others. We become critical of ourselves, each other and those around us. We ask why. We feel guilt. We fear.  On the whole the days are long and painful—for our little boy and for us.  Clouds which dissipate with breaks of sunshine seem to find their way back just as fast as they left.

We hope dearly that none of you ever has to go through something like this. We are so grateful for those of you who have-your experiences have helped us to understand ours, and put it in perspective.

We hope, we love, we find joy in little things, we draw strength from each other and from you.  We find moments of happiness and belief. We have seen and re-experienced the miracle of life and have felt and feel the armies of prayerful souls lifting up our little boy, and us with him.