Believe

At some point many months ago, I felt deeply inspired to write my beliefs. I desperately hung to them and whole-heartedly believed them which is why I felt compelled to write them. I knew that I would need them & call upon them in the future. I knew that my beliefs and patience and hopes would be challenged. I knew that I had to believe in order for my family to believe, but most importantly for Parker to believe he could and would be healed in order for it to be made so.

I painted this. Believe...

Believe in miracles, in hope, in faith, in friends, in love, in courage, in growth, in family, in sunshine, in signs, in joy, in prayer, in smiles, in God, in angels, in Christ, in greatness, in flying, in patience, in endurance, in others, in forgiveness, in teaching, in perseverance, in the Plan, in laughter, in shining eyes, in happiness, in health, in yourself. Il faut y croire. I do.

I am reminded of the African nanny I crossed paths with those many months ago who when asked how things were, I recounted the story of my son. It was then that she thought deeply for for a split second and without hesitation said, "Dieu est Grand" (God is Great)...She then said, "Il faut y croire", meaning "You must believe". I do believe. I have to believe. I have to believe in a God who orchestrates this thing we call life. I have to believe in humanity & love & patience & perseverance...and that there is a purpose in suffering. I have to believe there is a God who would allow real, deep, sincere suffering in children and parents and in a purpose for life and death. A reason greater than I can know, or fully understand.

Do you believe?

6 weeks ago there was a funeral for a mother of three who lived and died in Paris. She died in childbirth, or soon after. I never met her, but deeply identify with her. She was english and living in France. She was a member of the same Mother's group that I belong to. She no doubt found joy & sorrow in motherhood in being a foreigner in a foreign land and raising children here. She knew she could die in childbirth. I don't mean that she knew it was a possibility, like we all think going into it. She actually had a diagnosis with a great risk of death and hemorrhaging from this childbirth. She did it anyway.

This mother's group is designed to help english speaking mothers living in France adjust to their environment and make meaningful relationships along the way. I pay tribute to this mother's group. They are my family away from home. These women raise their children in the streets and in the shadows of buildings in a beautiful, but often harsh playground. It was these women who cared for (and fed) my children when I could not last winter. It was these women whom I proudly call my friends. and whom I greatly admire. It is these women who have already donated over 11, 000 Euros in behalf of this woman's family that she leaves behind.

This group called Message. It was originally designed for mothers, but has evolved to include fathers and other caretakers over time. It was created 25 years ago primarily for ex-pats living in France who perhaps needed a helping hand in deciding which school to put their children in, or what the french word is for hairdresser, or finding help with a handyman, where to buy a light bulb or whatever. It has grown to over 1500 members in Paris. It is strictly volunteer based and operates on many levels. There is a medical directory, several weekly playgroups, holiday parties, etc. Now there are people in this group from all over the planet. Most of the people in the group in my neighborhood are fellow Stay-At-Home-Moms. We have grown to love & care for each other & one another's kids at last minute school pick-ups or impromptu playdates at the park. Most of the women in my book group are members of Message, and many of them have helped our family in some form or another on many occasions, but especially between February 22nd and June-through Parker's acute illness, surgeries & hospital stays. One of my best friends is the current President. She has 3 children, and a french husband. We stayed the entire week with them at their country home leading up to Parker's meningitis. We drove away from their home in Saints on Friday morning. Friday night, Parker woke up with a raging fever. Thankfully, all of their children were not ill following our departure.

Along with her husband, she leaves behind her newborn child, a 14-month old, and 5 year old. I closely identify with her. As a foreigner in a foreign land, yes, but also as a mother, as a warrior. I was deeply affected, as were all of my Message friends by this woman's story. I did not know her, but I mourn for her, for her husband, for her children. I must believe in a reason greater than I can know for her life to end as such. For her to leave 3 children behind. To die while giving life. I do believe. I do believe there is a greater purpose to this thing we call life. I do believe in love & sisterhood & faith & hope & prayer.

Tonight I pray for me, and Parker who crawls and hears and for this newborn child, his 14-month old and 5 year old siblings. And their father. I rejoice in love and these women who are warriors in my women's group.

Warrior Women.

There is a point in every girl's life where she becomes a woman. After some time, something in this woman's life changes, sometimes slowly, sometimes dramatically. And she changes. She transforms into a woman warrior. Where her life is no longer a game, but a genuine battle. Not only to survive, but to survive & be strong. These warrior women help and sometimes carry other women warriors or what is left of them behind to their next, sometimes final battle, or resting place. I believe in alot of things. I also believe in these warrior women and thank them. For carrying me in my battle and carrying this other dear woman and her family, and helping us all make sense of this thing we call life.

Christmas

Parker is doing better this week.

His respiratory illness seems to have mostly cleared up and he is back to exploring his world.

He hasn't achieved any huge milestones recently. He is crawling, with great coordination, and pulls himself up to standing. While in a standing position supported by our knees or couch or other, I noticed he made conscious decisions today to let go & reach out for our hands or another couch with one arm while leaving things behind today. Of course this means he is taking one or two very uncertain steps while still holding on to other objects, but he wants to move forward, and he is trying to do so. He is doing better at getting from the standing position back to the ground to crawl. Previously he would fall over like a board that was leaning against a wall would fall down. Parker would come down hard on his side and bounce his head on the ground. He has progressed in this area and now bends fully at his waist with his arms and legs both extended rigidly in a upside-down V with the floor. He will then slowly lower his head to the ground and then roll/fall to the side, or slowly fall backwards onto his backside. I am doing better at keeping myself from helping him down to the ground and am hoping he will soon figure out how to bend his knees. I think this would also help him with walking as he lacks any sense of real balance.

Parker visited Dr. Kossorotoff, the Neurologist, on Tuesday this week. She confirmed the EEG he had undergone at Thanksgiving showed everything was under control and suggested that we could start tapering off one of the anti-epileptic drugs in the New Year. She suggested that we should probably focus on one PT session a week -- which was pretty much where we have been for the past month anyway. Since he had progressed alot in motor skills since she last saw him in September/October, she suggested that we start focusing more energy on occupational & speech therapy from here on out. She says he will do much of his own physical therapy just discovering things with lots of sister stimulation and curiosity at home.

Renee has discussed with the professionals this past week the possibility of finding a physical therapist in the neighborhood rather than going to Garches on a weekly basis and possibly setting up a routine program outside of the office visits of specific things we can do at home for Parker by way of therapy. The family ENT re-confirmed his opinion of Parker's speech therapist as being competent, and well-known in the community for cochlear implanted deaf speech therapy. The discussion of placing Parker into a deaf school or hearing impaired school is back on the table now that he is well enough in other aspects of his care. This would likely be a few sessions/week as he is just 18 months now, but we are discussing the possibility of placing him in a specialized school next Fall with a goal of having him integrated into a main-stream school as soon as possible (if ever possible).

It is hard to visualize him walking with his balance so limited at this point. But truthfully a few months ago, it was not clear to anyone whether he would crawl. We delight in the idea of him walking in 2010, though what I really wanted this year for christmas was for Parker to walk.

We have some Christmas traditions that we have maintained consistently over the years.

For my childhood I remember having to wait what seemed like hours after we woke up on Christmas morning before we could get to the opening of presents. After eating breakfast, we would be allowed into the tree room one at a time, youngest to eldest, and then open gifts in the same order-one package at a time. This tradition has continued in our family here. Inevitably you would have a runner-- someone who would get into the room unnoticed and sneak a peak before one of the parents does a headcount and goes in after them. Today Parker was our "runner" and he banged through the double doors swinging them wide open and crawled several feet into the salon where our Christmas tree stands until his older sisters eagerly retrieved him.

We picked up another tradition from my brother and sister-in-law, Mike and Katy: Each year, you find an ornament that represents some important event from that year. We have three ornaments representing moves we have made in our married life, four ornaments for each of the years of birth of our children, and the rest have typically been something from a vacation we took sometime during the given year. This year was simply impossible to find something that captured the essence of the year. Firstly, we have had some serious issues with managing our allotment of time just in getting through to Christmas and things like Christmas cards, stocking stuffers and ornament shopping didn't quite make the priority list. Secondly, we struggled with the concept of an ornament that would represent not just a one-off event but a fundamental shift in our lives. Finally, an Eiffel tower or cable car ornament are reasonably easy to find and one can readily associate a postive significance with this; meningitis, deafness, seizures-- it is difficult to establish a clear meaning with those elements.

Lacking in any other ideas, I took the toy cochlear implant from the stuffed koala which we had received after the implant surgery. It was not complete and few people would realize what it was but it was like so many things recently-- the best we could do in the current circumstances.

A few days later we received a package from my parents. It contained two books, a DVD and an ornament. It took me a moment to recognize what the ornament represented and it wasn't until I saw that one of the books was Dickens' Christmas Carol that I understood. Renee's eyes met mine and with tears in both of our eyes, she said, "It's Tiny Tim." I read the book to the girls that night, and, as it is with many things over the past ten months, it meant something different to me this year. Simple sentences like "Spirit, what will happen to that tiny lad?" and "God bless us every one" were read through watery eyes.

Although it is not a perfect metaphor and the ornament will no doubt be missed by many; there it sits in the middle of our tree: A man dressed in 18th century attire with a wreath in his left hand and a a young boy on his right shoulder. The boy is holding a small crutch in his right hand.

***

Of course we all ask in some form or another, "Spirit, what will happen to this tiny lad?" When I see Parker where he is today & where he was exactly 10 months ago today, I see many things.

I see his movements brusque, sometimes awkward. But I see him moving. February 25th, he was not doing much moving in any sense.

I see his eyes, full of love & hope & pure bliss, when I pick him up from his crib, or pass him in the hallway. End February his eyes were not open to see.

I see his smile, huge & toothy & all encompassing. In the ICU that baby boy in the bed with all of those meds & cords & sensors & treatments was not smiling, and neither were we.

I see his twin run circles around him, climb on him, give kisses to him, tackle him, and he cries. In February I realized that really sick babies do not cry.

I look at him & see dreams undone, but I see death & rebirth. I see hope & faith, not only my own that has brought this child back to us. I see love & sacrifice & prayer & fasting from many many people who selflessly gave their time & learned something about his or her own life, or character, by helping someone in need, even if it is just a prayer in their behalf.

God has blessed us, every one. Every single one. Parker again & again, but me, and John, Abigail, Hannah, Axelle, and Penelope. He has blessed us through this difficult time, through limitless love & support. Through this long 10 months.

I pray mostly that He will continue to bless us every one. But that He will bless Parker alot in the coming 10 months, and the 10 months after that & the 10 months after that....and after that & that.

It is Christmas night. I think of Mary. The mother of the Christ-child. I sit in my very sacred place on this Holy Night. I cannot imagine what she felt to hold her baby who was literally half-Deity, the responsibility & the honour that must accompany that. I do not wish to compare my son to the Saviour of the world. But I can, perhaps, begin to comprehend what it means to give up your son (or part of him-in my case the hearing part and the vibrant, moving, running parts...) for things that are out of this world. Or give different, pointed meaning in this world, and try to make sense of them. All the while I hear the words, "For unto us a child is born, unto us a son is given!" What depth and dimensions that translates into this year. "Unto us. A son is given. The Prince of Peace".

Angels We have Heard on High, I heard them loud & clear 10 months ago. As time goes on, I hear them more quietly, and I strain at times to hear them at all, but I can hear. I can hear them. I hear them still. Echoing their joyous cry, "Hallellujah. Hallelujah."

Hallelujah, God Bless us every one. God Bless Parker. Merry Christmas.

***For those of you who closely follow these writings, it will be easy for you to tell the difference in writing styles. We both wrote this update. John usually asks me to proofread his posts before publishing. This time I had to add to it. He started. I finished, to lessen any confusion. Merry Christmas & God Bless you

Winter

Parker is doing ok and taking little steps of progress.

Early last week he started having severe respiratory issues and woke up several times in the night coughing and trying clear the congestion. He spent a lot of time crying inconsolably during the day as the only way to express his discomfort. He also refused to eat or drink. He would complain loudly being left on his own and only Renee's embrace would calm him.

We were concerned that this was either due to a negative reaction to the flu vaccine he had or some malfunction with his shunt. It lasted awhile but Renee can name 3 days where he cried continuously.

At the visit to Garches on Friday Dr. Quijano identified it as bronchitis and some inflamed ear drums and gave us 2 different antibiotics to treat. Since Friday night, Parker's health and demeanor have improved dramatically.

Today we had a visit with the Neurosurgeon, Dr. Puget. PJ had a CT scan on Friday and the results looked very similar to the ones we had seen in June and September and Dr Puget confirmed that there wasn't much new; the ventricular shunt seemed to be working correctly and there continued to be a pocket of liquid in the subdural portion of his skull that had not grown or dissipated in the previous months and also did not seem to be putting pressure on the brain. She asked to see him standing and we suggested he crawl across the floor which he did quickly and with his typical coordination. Unsolicited she said "your little boy will walk in 2010". She then sent us on our way and said we would have another appointment in June 2010 but Parker wouldn't need a scan.

At home he is trying to keep up with his sisters and is exploring the apartment. He has a favorite branch of the Christmas tree to maul and I am constantly re-placing the lights. He has a particular interest in garbage cans and seems to seek them out throughout the house, open them, then proceed to remove the contents onto the floor until he finds something he would like to play with. Of course we try and discourage this behavior whenever we see him but he is pretty quick at finding his way around the house without us noticing him.

He is responding well to his implant and makes many more sounds. One of the other mothers who has a child with an implant devised a mini-backpack to house this and keep it attached to a child's body. She made several and provided them to the doctors at Necker and I think it has been an effective way of preventing the implant from falling off.

With the first flakes of snow accompanying us on our drive to church yesterday, temperatures barely above freezing and starting the day in a grey dawn and finishing it in a dark early night, winter is upon us. It has always been the least favorite season of our time in Paris, the cold is biting, the sun is sparse, and the inevitable sicknesses that accompany the elements seem to multiply and propagate amongst our children and eventually impact us as well leaving us tired and lacking in energy and resolve. Invariably this leads us to reflect on last winter and last Christmas where the trials and concerns of that time seem trivial.

Last week was also difficult for Renee as I was traveling and she had to deal with keeping the family moving along without the help of our nanny, Lea, who deservedly returned to the Philippines for Christmas after a 6 year absence from her now 8 and 10 year old sons.

We also received a letter from the French administration where they accepted Parker's file and classified him as being at least 80% disabled. While we had been waiting for this letter as it allows us to get reimbursed for many of the costs associated with Parker's treatments, it was difficult for Renee to have another tangible reminder that her little boy is different. He is not like the other little boys of our friends and family. He is not like his sisters. He is deaf. He is handicapped.

I admit that the words are somewhat hard to accept and commit to record but I truly believe that may be what he is, but it is not what he will be.

I would love to pretend that it didn't bother me at all that his development has been slowed: I hate meningitis for what it has done -- so much it scares me that I could have such a loathing for something inanimate.

I also wish that I had the serenity of faith that regardless of what his condition is now, through the resurrection this will be healed and this time will count for a small moment. I do believe that, deeply in a sustaining manner-- but I am an impatient soul who likes to get to the seeing part of things quickly after belief.

I am convinced that soon he will be able to walk, and talk and hear or process sound or whatever it needs to be. I am convinced that he will learn and grow much like other children. I am convinced he will be strong; in fact I am convinced he will be stronger.

Hannah's Video

Things that I love...

Things that I love…

That all of my kids have one time or another spilled cheerios all over the floor

That my son is well enough that I can actually care about things like Abby’s times tables, or my kids brushing their teeth, or getting enough veggies in their diets everyday

That it doesn’t bother me (that much) when there is a prayer said morning, noon, or night that doesn’t mention Parker & his road to re-gaining health

That my 6 yr old Hannah tells me almost nightly with a slight lisp, “I love you more than you can imagine”

That my son crawled down the hallway this morning to greet me in my bed after some anonymous sister freed him from his prison-bed—at 6 am

That Parker has started signing with that same great smile & head turned-ever-so-slightly backward & upward with that toothy grin

That my girls waited for me in the top bunk tonight to read scriptures & say prayers together

That I feel that Parker is well enough that I can actually spend a little quality time with Penelope

That she fell asleep in my arms today while I hummed the song I have been humming to Parker for months

That the occupational therapist chose for her sign to be “rouge a levres” since she is the only French woman I know who wears bright red lipstick every single day…and she says things like “tres touchant”, “trop charmant” and “extraordinaire” about my son

That I can actually pick up a book & read for the first time in 18 months

That yesterday my husband challenged me to read the Book of Mormon by Christmas

That he writes me love notes when he is away

My home at Christmas time—it is like a grotto and safe haven from a busy, rustling & bustling city—and life

Axelle insisting that I make her hairstyle into “two bun-ponies” for the 28^th day in a row

That my brother said to me yesterday, “It’s like a seed that they find buried inside rocks for thousands of years, and they plant it & give it water & it grows... Parker will do the same. It’s all miraculous. Just give him time…”

That the speech therapist was pleased enough in Parker’s progress this week that she got out the video camera to record it

That he steals Penelope’s binkies & she steals his

That they crawl & kick & fight all over each other when I put them in one bed together

That Parker moves when he sleeps now, like normal babies. For months he would stay in the same position we lay him in for 12 hours straight...

That Penelope plays peek-a-boo with Parker & he belly laughs

That he has a big, healthy belly

That Parker screamed, turned bright red with anger & tried to escape the respiratory therapist at Garches when she said to me, "I am not used to doing therapy on kids who can cry & wiggle away..."(She deals with severely paralyzed, handicapped children on a daily basis). I cried a teeny bit & told her, "Everytime I am slightly annoyed that he gets away when I am changing his diaper, I smile to myself & think, "It is monumental that he is moving at all."

That my daughters speak French to their teachers & English to me

That Penelope turns when her name is called in French

That Parker turns at all when his name is called

My son is deaf...and yet he hears

I love technology & researchers & Dr Couloigner

I love Parker's cochlear implant

Breathe thankfully

Tuesday when I held Parker against my chest trying to keep him from grabbing all of the electrodes on his head, my (& the EEG tech's) reflex was to sing to or shush him, while trying to keep him still. It didn't work of course because we had removed the CI to make room on his little head for electrodes & sand & water & rubber tubes. He could no longer hear. I felt a strong impression to hum to him. This way, he could at least feel the vibrations (& love), even though he could not hear the sound. The songs that came to me were ones that I know were heaven sent. They have been in my forebrain for too many months now. "Souviens-toi mon enfant" and "Be still my soul"...He calmed & quickly went to sleep (as required for this latest EEG). I held him in my arms, tears streaming down my cheeks as I looked out the window at yellow leaves falling from the trees outside.

I cried for the witness of God's love for me, and for us at that moment. I cried for the knowledge I have of heavenly things. I cried for the whisperings I get from heavenly beings, telling me to push onward, and earthly beings who tell me to keep on praying. I pray alot, unceasing. I pray for all of my kids, not just Parker. I pray harder & better now than I did 9 months ago.

I cried for pneumoccocal meningitis, I cried for my son's hydrocephalus, and the tube I feel running down the length of his chest every time I hold him. I cried while looking out the window longingly at the falling leaves for recognizing we were hospital prisoners for only 45 minutes this time. I cried for those days I sat inside Necker, without air, without unassisted breathing. I wished I could run out of there with my healthy baby & never come back again. I cried for the fact that this road is only walked down once, and there is no retracing of steps. I cried for the headgear my son now wears, inside and outside of his head...as well as the fact that I am now grateful for it. Before I could hardly stand to see a picture of Parker's implant. He turned & I got this one by accident & I felt no anger or defeat for the first time.

I cried for my friends whose mutual love grows deeper & more real with the lines on our faces. I cried for sick babies everywhere. And for their mamas... and papas. I cried for the fact that every time I see a healthy boy walking, I wonder if Parker will walk. I wonder if he will ever hold his head up straight, for an extended period of time. I wonder if he will crawl as fast as Penelope... Ever? I wonder and wonder and wonder. I wonder if my prayers & the girls' for Parker to "crawl & walk & talk & hear" that also now include "have good balance" and "heal his brain from this illness" will come to fruition in this lifetime or the next. I wonder if I am learning what I must...and with grace.

I ached. I ache in deep, real sadness, but also for the sense I feel in every fiber of my being that "this" is heaven sent and we are slowly learning here what we are meant to learn...

Today is Thanksgiving. I am thankful.

I am thankful for so much I couldn't even begin to name it all. If I tried, it would never give adequate meaning to words. As we sat at the Thanksgiving dinner table tonight I was surrounded by dear friends, and one acquaintance. She rightly & unsoberly said, "So in my family at Thanksgiving we have to say the one thing we are most thankful for during the past year." A little surprising to me, I lost it. Are we still in 2009, I thought..Is that even possible? Of course my eyes filled with tears & it went without saying. We left it at that.

But while I held this beautiful baby boy in my arms (that seem weaker with time), I was reminded of heavenly things & I prayed intensely. I prayed this child's brain could be healed. Healed from this terrible illness. Healed from this trauma, Healed from this year....and I felt peace. It goes without saying that I know we must suffer & endure in order to truly appreciate joy & goodness. I know that he may never be the same boy he could have been, but as I know we are better because of this wretched illness, I pray that he will be, too. I felt peace. I felt peace with whatever that brings...on a windy autumn day, with yellow falling leaves.

Parker has been seizure-free for 14 days today. What joy saying that fills my soul! He is crawling, pulling himself up to standing on furniture and people. He is hearing systematically & imitating sounds occasionally. He laughs & laughs & laughs and smiles. He made me cry from belly laughing so hard while watching our friends' kitten run & jump across the room a few days ago. He has never seen a kitten before. It was pure heaven to hear those laughs. They resounded in my heart and my dear friend's entryway. She laughed & cried with me.

As I reflected on all of the things I was thankful for today, I was very thankful that John was not hurt while being mugged on Monday. I was thankful my 8 year old is learning her times tables, and actually still welcomes her mom into her classroom to do a Thanksgiving presentation. I was thankful my 6 year old still prays for the neighbor upstairs who lost her husband nearly 3 weeks ago. I was thankful for an indeterminate number of hugs & kisses from my 4 year old after school who does not usually freely give of such things. I was thankful for a healthy baby girl who bosses me around as much as I am around. I was thankful for a giggling, standing boy in his crib after midnight tonight...and a myriad of other things.

Among which was the following message I had in my inbox upon returning from our lovely Thanksgiving dinner tonight. The doctor who follows Peej at Garches is a smiling mother (of 2 boys) from Spain. We often speak in english to one another, but she emails me frequently in french or spanish. She follows Parker's case with as much vigor as I do. You will become endeared to her as we have. She calls me by my first name, which is unusually informal in France...Never mind the grammatical/spelling errors, this is her 2nd or 3rd language:

Begin forwarded message:

Dear Renee, I am so happy to tell you that Parker's EEG is absolutely beautiful and normal !!!

this means that the whole medical treatment seems to be actually very adequated at this moment, probably the better effect comes from tegretol because before now we had several points with abnormal activity in the EEG and they are now disappeared! what about the crisis or episodes of fixed or dreaming eyes? is he also free of them now?

If it is the case, I do not think it is good to change too much in this moment, also because he is doing so well in his motor and global progression

Drug levels are a bit under normal for both tegretol and depakine, probably because they both interfere in each other's metabolism. I think that they may be acting in cooperation and are being effective at low plasmatic doses becaue they may be working simultaneously to potentiate their effects. I am not sure that this will happen with one drug only)

We'll discuss it tomorrow, but I'll be very happy to maintain everything as it is if Parker is doing well (may be just stop progressively urbanyl) and then wait until january (after christmas, so we will assure a certain period without changes), giving him a good covering treatment and just waiting for his improvements and leaving you take a breath for a while

Let's see tomorrow
estoy tan contenta
hasta mañana
sqr

Me too, estoy tan contenta, and I will happily take a breath for awhile. Of outside, autumn air with falling yellow leaves. Thankfully, I weep.

Light

Parker is doing much better this week and we have been encouraged by his progress.

On Tuesday he met with Dr. Laccourreye who works with the adjustments for the cochlear implant. She believes at his current levels he can process sounds at between 40 and 50 decibels. Whispers are at 45 decibels so we should now be at a baseline tuning his implant where the mechanical part will become less of an issue and we will be much more focused on the speech therapy. We don't have a scheduled appointment with Dr. Laccourreye and will likely see her every six months to a year from now on.

Parker has also made strides in his physical progression. In the mornings recently we have come into his room to be greeted by him standing in his crib holding on to the railing. He has mastered moving from a prone position to a sitting position as well as a sitting position to a crawling position. When he stands (with assistance), it is fairly unbalanced and he ends up falling quickly. His desire seems to outpace his physical ability and he seems to process the fact that everyone around him is upright and moving. On some level this is hard to watch but his natural interest and curiosity is what the doctors say will push him forward. The physical therapists at Garches were very encouraged by his recent progress and while Renee suggested that maybe we should increase the number of times we went Garches they discouraged this due to the fact that he will get more out of his own personal therapy moving about than what they can address. He will continue to go there for monitoring & to check for muscle tightness or abnormal postures or movements. They give Renee specific muscle groups to stretch or work on each week she meets with them. They are always surprised by his progress. They did recommend that we get a helmet for him as they anticipate he will be banging his head and falling a lot. They say this is normal and he will have some bruises but given the amount of hardware in is head right now and his propensity to seizures, we do need to make a point to better protect his head.

He continues to have episodes of seizures sometimes multiple times a day. It is the same spasm with his eyes briefly rolling towards the right & backward and his arms going to the side almost as if he is shrugging or being startled. Each spasm takes less than a second and he will have a series of 5-10 over a 2-3 minute period. They seem to be triggered when he is tired, or hungry or thirsty. He is on three different kinds of medications to control this but the doctors are still working on the correct dosage and mix. The fact that he keeps putting on weight also factors into this equation. While discouraging for us to witness, Parker seems to be handling it better now than he did before. Previously he would become very upset (not typical for him) to the point of being inconsolable and he would seem to blank the rest of the world around him out. At some point he would get a terrified look in his eyes & seek us out for reassurance, all the while being very quiet. He now seems to continue on with what he was doing. Yesterday while playing with a toy he started a series of seizures and he continued right along playing between each spasm.

Obviously every parent thinks their children are beautiful; we have thought this for each one of ours. Parker is somewhat special for us. It is not so much his bright blue eyes, his cherubic little face or his disheveled blond hair. It is something about the way he lights up when he sees us from across the room, or when we do a little sign language to him or when we greet him in the morning after he has woken up. It is always the same: a combination of a toothy, opened-mouthed grin, with his eyes and nose wrinkled up as he tilts his head back as if he is basking in some ray of warm sunshine that emanates from our direction-- yet we are the ones who sense that we are being filled with a sometimes blinding level of light.

I have realized that while Renee tends to get concerned about individual details where the doctors make notes of problems, I am mostly optimistic as long as I get my dose of sunshine from Parker on a regular basis. A couple of weeks back when PJ was having problems breathing, one day when I went to get him out of his crib he laid there wheezing and struggling for air with an expressionless gaze. When I walked to work later that morning I couldn't shake that image from my mind and the many times I saw it previously in those days at Necker. A flood of emotion and concern came over me as I feared that somehow I would lose him and wondered if I was foolish for leaving him at home in that state.

He recovered, but I remembered thinking how fragile and vulnerable I still felt, and not just for Parker, but for any of my children and I desperately felt that I had to better control the situation or I would break down. As I thought, more rationally at what that might mean I realized that this is impossible. I am now working on my ability accept that somedays the sun won't shine and I somehow figure out how to soak up its' rays on the days it shines brilliantly.

Comfort in sorrow

After struggling through a respiratory infection (Renee thinks it was H1N1) which slowed his progress, Parker is doing better this week and has started up where he left off.

He has been getting on all fours and crawling around, not coordinated but moving each member to take him forward.



Because he was ill we decided not to attend any therapies scheduled for the week and it was somewhat of a break for Renee to not constantly be running from one place to the next.



This was a challenging emotional week for us. We have been following the progress of a little girl named Olivia. She was born a month ago and had a condition known as trisomy 18. Her father is my sister-in-law Katy's older brother and they have created a blog to track her life, which, in the case of children with her condition, was not expected to be long. As we read the blog entries and saw the pictures and shared with our children her progress, we were all starting to become attached to Olivia though she was far away. The girls prayers always included "please bless baby Olivia".



I also could see that at some point this would lead inevitably to sorrow. That as we thought of this family, as we started to love this child and pray for her and her parents, that this would mean that we would mourn her passing, and this was a very frightening prospect to me.



Despite this, we persisted on with our prayers and every morning the girls would query and we would open up the blog and see small signs of progress, some signs of digression, but an overwhelming and universal sense of love. Yet I wondered what would happen when Olivia's time on earth would be over and how my family would react.



Katy informed us this afternoon that Olivia had passed away. I shed a good many tears, as did Renee.



Hannah, in her perfect and pure faith included in her prayer tonight, "Please bless baby Olivia that she can get resurrected".



As Abby has been preparing for her baptism this Sunday I have thought much about a specific scripture that speaks of the qualification to be part of the fold of God "...and are willing to mourn with those that mourn... and comfort those that stand in need of comfort..."



Today we mourn with Pam and Trevor for the loss of their daughter. Though I do believe that Hannah's prayer will ultimately come true and Olivia and other children like her will one day be resurrected, for a time we cannot see them, hear them, hold them, or watch them grow. I can only imagine how difficult that must be.

Stronger back, Better shoes

I don't pray anymore for Parker to be saved. I pray for strength. For a stronger back to carry the burdens that are asked of me. And better shoes to walk the paths I must trod. I still pray for Parker to be healed. Every single day. You may think I am delusional. Maybe I am. But I believe it is still possible. It may not be today or tomorrow, but it will be. I don't think in terms of days or months anymore. I think in years & spheres & realms out of earthly dimensions. I know Parker will be healed. I know it. Just like I knew I held the pen that scratched these words on my little post-its at 1 am this morning.

I pray for more patience, more hope, more wisdom to guide me where I must go. Where I do not wish to go, but where I must go, so I load up my back, put on really great shoes, try to chin up & walk.

I walk & walk & walk. Sometimes I run with joy to my destiny and unashamedly take what I must. Sometimes I tiptoe backwards in hopes that I can change time. These backwards steps usually last only for a moment. Today I walk forward, but very, very slowly.

The cab driver said to me "C'est la vie" as he drove me and Parker to Necker last night. Time slowed way down as I actually saw the sun setting between buildings... and I told him, "A l'hopital Necker, sil vous plait". To the Emergency Room.

Parker had an asthma attack. What? But he doesn't have asthma. Well

, I guess he does now. He got some kind of respiratory infection which caused him to get a high fever and have difficulty breathing. Swine flu? No. Perhaps. 6 nebulizer treatments and a thorax x-ray later we were sent home with steroids, antibiotics, and breathing treatments. More medicines? Really? Is that even possible? Where will we fit them in the day...?

Six hours later I returned home in a cab to lie my son to sleep. Sleep in his own bed, with no lights and no cords & no machines & no needles... And no other coughing or crying children around. The house was asleep when we arrived. I lay him in his own warm, comfy bed. He quickly joined his dad and four sisters in slumber. Home is good. A quiet, sleeping home is even better.

I prayed last night in gratitude that I still have my son at home with me,

with us. I prayed for the parents and children I left, we left, in that sick-child prison. For them I prayed for stronger backs, too, and better shoes. They are going to need them where they are going.

Another Perfect Day

Admittedly I have been silent on the blog. I haven't wanted a blog from the beginning. It is all just so personal & overwhelming & intimate & heartbreaking & exposing & just plain hard hard hard. Part of my silence is just that John is so great at communicating that I let him do it. Part of it is that I am too exhausted-mentally, spiritually, physically that I can't think to do it. Partly, I can't even most of the time identify , not to mention, express all of the emotions I have that I just don't even bother. Also, he is better at separating the reality from the ideality. Let's face it: He is a realist. I am an idealist. My blog posts tend to deal with feelings & hopes & dreams. His do, too, but also tell the nitty-gritty day-to-day realities.

That being said, occasionally I think of a "good post". Something worthy of my time & attention, and yours, perhaps. Then I think I should share this burden with John. He has "alot on his plate", too after all.

I think it comes with age, or wisdom, or knowledge that all days are not actually perfect, or even noteworthy, but the past few years, I have starting collecting in my memory days that are worthy of the title "A PERFECT DAY". To me, it signifies something so beautiful & the feelings I have on that day are usually so joyful that I can't help but want to photograph everything in my mind-take it, covet it, wrap it into a little ball & keep it very close to my heart, or etch it into my mind. It is a good, happy, perfect day. Something I want to remember--forever & ever.

I only have 3 days that fit this title in my 35 years of life. Sadly they do not include my wedding day or even the days my children were born (those were great, of course, but I was too young in my maturity, or tired or distracted or stressed to truly appreciate them). I am sure I had more perfect days when I was little, but can't remember them at all. Seeing as how Axelle is included in all 3 of my perfect days, I must have only started realizing these in the past 4 years.

The first was Axelle's first birthday. She was born in May. The winter was long & gray. For those of you who live in Paris, you know what I am talking about. The first hint of springtime sunshine, and everyone runs outside & can't stop talking about it. When Axelle turned one, Abby was a mere 4 1/2. Hannah was then, 2 1/2. I decided to take Abby out of school & celebrate the fact the sun was shining & I had 3 gorgeous creatures given to me. We ate at their favorite restaurant (after a morning nap), took pictures by the Arc de Triomphe, then headed on the 30 bus to the Eiffel Tower for some pink soft serve ice cream in the shadows of the Tower & picked flowers. I remember thinking I was the luckiest woman alive. I had some tourists take our picture.

The second "Perfect Day" was in Kauai 2 summers ago. John & I had just kayaked the NaPali coast, my extended family had returned to the mainland. The girls wanted to go camping like Mom & Dad. We loaded up and drove the yellow Jeep Wrangler (Thanks to the Bebblings) to the furthest beach on the island and watched the sunset over the waves in a perfect pink/purple/orange haze. John & I talked about our dreams & how lucky we were as our 3 energetic angel babies turned into young girls danced & pranced in the sand with waves crashing behind them. We talked of our love for each other & these precious beings we called "ours". I was the luckiest girl alive. There was no one else around. John held out his arm & took our picture.

My third Perfect Day happened this weekend. Well, it is not really a whole day, but more of a flash within a day...that lasts. This has much more meaning considering I feel like I have lived on a different sphere than most earthlings the past 18 months (being pregnant with & having twins will do that to any normal person) and more specifically the past 7 months (watching my healthy infant son nearly die & come back again). A few short weeks ago, I told John I wasn't sure I would ever feel joy again, I was just too too too too sad....that I would never stop blaming myself for not protecting my son from this wicked, awful bacteria. To my surprise he got very angry with me. For those of you who know John, you know it is rare to see anger in his eye. This only made things worse. Since then, I have worked through alot of things. I have done things in the past 7 months I never dreamed possible, or even thought would be or could be expected of me. THIS IS WHAT MAKES THE MOMENTS ALL THAT MUCH MORE WORTHWHILE. I live more because I have tasted death. I think I have, you can debate it. I think more, I listen more, I love more. My joy is far greater because my suffering has been immensely greater. I do feel joy again. Rejoice! I feel a calm, loving presence in my life too, knowing that I can handle what comes next, whatever that means. I can do it because I have been tested, and proved. I can do it because I feel and know the presence of angels...here & there. So back to my perfect day: Only 3 weeks ago, I told John I couldn't imagine I would ever feel happy again. Yesterday, I felt it. I felt it all day long. I woke up with a spring in my step. My son is sitting from a lying position, he is hearing (albeit with machines), he is crawling (call it what you will, but it is forward motion). All of these things were uncertainties only weeks ago. I have a husband who cherishes & supports me, and 4 girls who honor me (well, mostly) and in whom I find great, sincere, genuine pride. My son thinks I am pure sunshine. They are all amazing. I have a loving family & dear friends who stand by me, even when I falter. You might meet me on the street & think I have "too much on my plate" or "a child with special needs", but you will not ask if I have joy in my life. You will see it in my eye, my smile, my touch, see it reflected in the people's eyes around me. I am back. I am here. I am joyful. It is genuine. My "perfect day" moment was a picnic by the Seine at a church party with my 5 children & sunshine with a few drops of rain. Lots of friends, and great food. Am I lucky? Do I even have to ask...That's Perfect Day Number Three.

Urbanyl, Depakine, Tegretol

Parker is going through a series of new medications but seems to be continuing his physical progress.



Dr. Quijano sent us an e-mail on Sunday and indicated that given Parker's continued episodes we should start him on the new medication Urbanyl as soon as possible. We found an open pharmacy and started him that night. Meeting with them on Wednesday, they also changed the current anti-convulsive from Micropakine to Depakine which is the same family of medications, but in a liquid form, making it easier to administer three times per day rather than two. At Necker on Wednesday, Dr Quijano from Garches met & discussed with the head of the Neurology Department to determine what the treatment plan should be for Parker and whether there should be some additional medications. Friday they informed us that we should move him to a different drug called Tegretol, while slowly phasing out the other medications.



We are concerned that he is going through a large range of different medications in a short amount of time. Although, while he had a few episodes early in the week, the last part of the week they were mostly cleared up. Dr. Quijano is also keen on pointing out that the small episodes that he is having, while difficult to witness, shouldn't have a lasting impact on Parker's development and he could potentially grow out of them.



He also had cochlear mapping session (where they adjust the implant--or fine-tune this boy's "hearing") on Wednesday. Dr. Laccourreye informed us that there was significant ossification in the right (implanted) ear and that the electrode titled "one" was no-longer functioning within acceptable ranges. This may limit his ability to hear deeper sounds. She did reassure Renee, however, that in essence Parker could hear with only 10 of the normal 22 operating electrodes.



They also tracked down the particular form of meningitis that Parker had this week. The "Centre National des References Pneuomocoques" confirmed that this particular strain was not covered under the vaccination that he had (Prevenar), it is included in another pneumococcal vaccine which they give to older children. It has been suggested that we vaccinate our older children with this vaccine (Pneumo23) but it is currently out of stock in laboratories until further notice.



The reality is that he is progressing physically. Even seeing him every day we notice it. His fore-arm only body drag is fairly efficient and he will get up on his hands and knees. When we put him in his walker he has some directional control and can, to some exent, navigate our very narrow hallway. For months now, we have left him on the floor in a room and he would essentially stay close to his originally planted spot. Now upon returning, we find he has actually left the room & is searching for (mostly upright & female) playmates down the hall or in the entryway.



Dr. Quijano is very positive on his chance to progress and has been uncharacteristically clear that she would anticipate him to walk and function mostly normally cognitively and physically. She is also keen to remind us where we have come from. "Il est venu de loin" she said to Renee. This means, "He has come a long way".



He is a very energetic little boy and from the beginning the therapists have said that his engaged curiosity will make all the difference. We do see a clear sense of frustration from him not being able to do all that he would like to do and I think this is driving him forward. The occupational therapist reported today that Parker seemed much more focused, directed & steady in his movements. She made him arm crawl several times across the room. She congratulated Parker for making a formal "step" in therapy. Renee cried as she agreed he seems like a different boy. No longer a baby, but a boy, more serious, more sedated, but also more coordinated. Florence also added that she thinks Parker will be crawling in 3 weeks' time. When Renee reported to the girls at dinner this new & exciting news, Abby shouted, "Yes!' and Hannah said without hesitation, "That means God is hearing & answering our prayers..."



We were reminded of several things this week and some of them were emotional to experience. We were staying at the Marriott timeshare to the east of Paris which we have used as an escape to the countryside on occassions. When we checked in, Hannah got very sad and she mentioned last time we stayed there Parker could sit-up by himself, then she burst into tears. I realized that we hadn't stayed out there since the day Parker had gotten sick.

Abby & Renee also stayed up late the first night talking & crying & sharing their emotions about anger & pain & suffering & angels & faith & hope & heavenly things & "why". This is alot for anyone to process, not to mention a 7 year-old regarding her baby brother. Abby, when asked what she wanted for her upcoming birthday stated she would like Parker to be able to crawl for her baptism on November 1.



Axelle has a very on and off relationship with prayer; sometimes she refuses to pray and there are periods when she insists on saying all of the prayers. Currently she is in the latter mode and she always adds with her slight lisp,"Please bless Parker that he can walk, and talk, and crawl, and hear."


My personal desires are a little bit more varied on the subject. While I of course want him to walk and talk and crawl and hear, I have a hard time not projecting into the future and being more concerned that he will be able to do other things. I have found in a recent prayer I focused on him being able to succeed in school, to have good friends, to actively serve in our church and have the opportunities I had growing up. That one day he will have a meaningful career, find a wonderfully loving spouse, get married, have children. That I could guide him in avoiding some things that were hard for me and be a model that he could look up to but ultimately that I could help him be a better person than I am. At some point I realized in this prayer that all of this is what I wanted for all my children, and all of them would face their own set of challenges in achieving these goals and I thought of whether Parker's challenges would really cause that much of a barrier to achieving these.



Abby's goal of having Parker crawl in the the next few weeks until her baptism just may happen -- for Christmas I would like him to walk.

Growing

Parker is progressing this week and we are doing much better.



He has continued to strengthen and the physical therapist at Garches even remarked that this was not the same boy from a week ago and was much stronger. Even more notable, she said was that he had no spasticity AT ALL on Friday.



He certainly gets around. If you put him down. I left him on the floor of the front room and 2 minutes later came out to find him in the entry way. He doesn't crawl he just rolls across the floor which typically means his implant is left somewhere behind as the magnet has come off.



We don't know how much he is understanding but he has started responding to his name. He also in the past days has started making new sounds. the speech therapist is very pleasaed with this. She says we are to work on playing "peek-a-boo" with him as well as the 3 animal sounds "meow", "moo", and "quack" (or their french equivalents. He thinks this is hilarious & especially loves the signs we make with them. Parker has for the first time this week started waving to you as you pass him in the hallway in his walker, with a big-toothed grin. Renee and her sister Rachael took the twins to singing class and Parker was the happiest child while Penelope was the bossiest child in the class. Both seemed to really enjoy it.



We were expecting Dr. Quijano to encourage us to start him on another medication this week and we had been praying to know whether or not we should push back. We have been doing a lot of research into the medication and asking different doctors who were all generally supportive of the medication path and the medicine in question citing that it had been around for a very long time and there did not seem to be any long-term side effects. We were still unsure. We've also come to realize that it is not that uncommon for kids in these situations to be on 2 different anti-seizure meds, while he is still currently on one.



When we met with Dr. Quijano on Thursday she was less insistent and basically said that we should wait and see. They are going to schedule another EEG for next week and determine from there. Basically they describe his propensity for seizures as being very close to a cliff and the slightest abnormality (sickness, dehydration, fatigue) can push him over that cliff. The medicine helps one come farther away from that edge. They are also less concerned about small seizures and indicated that if they don't last for at least 20 minutes, it shouldn't cause any damage to the brain.



We didn't see much in terms of seizures for most of the week, although Friday night PJ did have what seemed to be a tick where he thrust his hands to the side three times in succession. This was repeated again on Saturday with both arms being spread wide twice. Sunday after church he did something similar. We reasoned that it was likely due to a combination of fatigue and dehydration and we would note this and discuss it with the Doctors Monday. Renee is visibly unsettled by this.



We are thankful to our Father in Heaven for giving us this week and have felt the prayers of our many friends, family and church community in particular this week-- more for us as we were better able to deal with the challenges better than the previous week.



There were some challenges though.



Renee has been trying to get the twins a spot in the same daycare that the three older girls all attended. It is just for one day a week but gives them a chance to interact with other children and also have a first experience with French. It is difficult to acquire a spot but given we have had our other children there and a dear friend of ours has her daughter there, we were relatively certain the twins would be accepted. This week they told us they had a spot for Penelope but were not equipped to deal with "special needs" children such as Parker. It is hard for us to face that reality.

Last night I was at a church activity and I watched as a father carried his daughter in his arms wondering how old she was... She was seven months old and I realized that I had a son who was 7 months once, a son who was special, but not "special needs". A son who could hear and move like a 7 month old should move. At 8 months it was different and scary. At 15 months it is still different but thankfully a lot less scary.

I have been thinking lately about that fact that we are almost to the time where Parker will have been deaf for more time in his life than he has been hearing. That memories of what it was like when we thought our greatest trial in life was having twins seem to be so distant it almost feels like we can't even imagine that we are those same people.

We keep working so that somehow we can get him to catch up with his sister, terrified that it won't happen, yet accepting it probably won't happen any time soon.

Though there have been challenges this week, we clearly felt a stronger sense of calmness and that we were ok, maybe even good. My guess is this likely has less to do with anything that we have done but more that people responded to the request to offer prayers on our behalf, and for that we are grateful and only hope that we can continue to feel this strength that is not our own.

Watching

Parker seems to be doing much better.



After a couple of days of anomalies with our little boy, we are somewhat re-assured but still waiting and hoping.



On Thursday Dr. Quijano read the results of the EEG from the previous day and became more concerned as it indicated that there seemed to be a series of mini-convulsions almost constantly that weren't manifesting in addition to the facial tick. The convulsions would stop when he would enter a "deep sleep" phase. At her request we took Parker to Garches to run a CT scan but showed no differences agaist what was already there two weeks prior. She also determined that he had an ear infection and started him on antibiotics.



Friday, Dr. Quijano organized for us to meet with Dr. Kossorotoff, the Neurologist at Necker. She examined him and looked at the EEG and scans. Dr. Kossorotoff believes that the increased brain anomolies may be due to the ear infection and that often this can be the case in children who have already had convulsions. She gave us two options, either add another medication to the current anti-convulsive, or we could wait, watch and see if the convulsions go away with the infection. We opted for the latter. We have a follow-up scheduled with her next Friday but we can cancel if things seem to right themselves between now and then.



I guess this is somewhat the new normal for us as I anticipate that every time Parker gets sick we are going to elevate it quickly. This is part due to the fact that with the meningitis we feel that we should have done something sooner but didn't recognize the seriousness of the situation.



The contrasting part for us is that Parker is still the happiest child we have ever had. His face lights up when we see him and he has a series of almost constant "happy" sounds.



We have also progressed on the "why" somewhat as we have been humbled again by the power of prayer and fasting.

Back to Real Life

Parker is back in Paris after a good break for everyone.



He continues to make progress in his movements and will roll around the floor until he positions himself to get what he wants. He is still progressing with sitting and can almost do a sit-up from a prone position. He also started doing some motions akin to crawling mainly using his arms.



When we left for the summer there was the looming question of the subdural liquid on the right side of the brain and the need to do another shunt. He had a CT scan on the first day we got back to town and we met with the neurosurgeon, Dr. Puget, the following day. It seems the size of the liquid pocket has not changed and more importantly the liquid is clear. Dr. Puget said this meant that we don't have another shunt surgery in the fall and we won't see her again until December.



We checked in on his cochlear implant with Dr. Laccourreye and Dr. Couloigner. Dr. Lacoureye was very excited as Parker seems to be responding at 60 decibels-- which means he can "hear" people at normal speech levels. The goal is for him to hear whispers at 30-40 decibels.



We also met with Dr. Quijano at Garches who assessed him to set up physical therapy. She expressed that he will most likely be able to walk although she is minorly concerned that it will potentially be spastic.


The second week back in Paris has been somewhat tougher. Parker started doing some irregular eye movements the first full Sunday back in Paris and was crying somewhat inconsolably. Talking to Dr Quijano she suggested that these might be minor seizures and we should watch them. When he repeated this again on Thursday, Renee took Parker back to Necker to have him checked out. The doctors were not overly concerned and mentioned that it might be that his anti-seizure medication might need to be re-dosed as he had put on some weight since the doses were first established. While it was somewhat reassuring that they did not think this serious enough to merit immediate hospitalization, we both realized that the anti-convulsive medicine we had hoped was more of a precaution, was really a necessity.

Yesterday we took him in for a vestibular exam to determine his balance ability. The results were not what we had hoped for in that his rotational vestibular balance is 0 and he will have to find all of his balance based on gravity. It is hard to tell what it all means for us but basically he will have to deal with being dizzy whenever he turns and there is a possibility that he will need to take medication to treat that as well.

At this stage it looks as if he will be spending 3 afternoons at Garches on Tuesday, Thursday and Friday for physical therapy. In addition they recommend he meet with the specialized speech therapist who works with implanted children another 2-3 times per week and the occupational therapist once a week as well.

We are struggling with all of this information. The summer we spent on vacation, reserving energy for the re-entry into therapy and doctors, seems a lifetime away and there is the deep longing that it would all just go away. There is a level of being on a break that is therapeutic but while the girls and I were anxious to get back to Paris, it has been harder than we could have anticipated. At some point we probably decided that we could just progress and move up from there --- this week we have been hit with the realization that maybe there will be other bad news that will come and our loathing for meningitis grows.

This past week & its news has also caused strain in our family relationship. I suppose we all deal with things differently but Renee has wanted to revisit the past and ask a lot of "if?" questions. I have avoided this as an unhelpful place to go and have wanted to focus on the question of "how do we deal with this?" going forward. Today, however, Parker has had a couple more mini-seizures and as I think of him suffering again, the question I have is "why?".

California here we are

Parker and the rest of us seem to be benefiting from the change of venue and seemingly perpetual sunshine of the Golden State.



Parker's new cochlear implant settings seem to be working very well and he is clearly responding to voices. The first few days after our arrival we spent organizing medical visits while also spending time with family and friends.



Both he and Penelope came down with a respiratory infection, but both seem to have come through it after some American antibiotics and a neighborhood family friend/pediatrician's quick & loving attention.



We have had two visits to the John Tracy Clinic in downtown Los Angeles which is a private group that helps children with severe hearing loss to integrate into speaking society. Our visit is in something called "Demo Home" where you bring your children for therapy in what is set up to look like a studio apartment complete with kitchenette, loveseat and overstuffed chair. Erin is our counselor and I am not sure what she is trained or licensed as but she works with Parker on speech therapy and recognizing sounds. She works with us by teaching us activities and songs to play with him, showing us practical things like how to test his equipment and introducing us to other resources that we may want to consider. Renee will continue to take Parker there over the next weeks but they also have a correspondence course which we will sign up for which should allow us to continue to progress even after we leave. They have a three week summer program for kids aged 2-3 which we hope to enroll him in next year and they have a sibling program that the girls can participate in which will help them while interacting with Parker, but also allows them a different forum of interaction with other children who have hearing deficient siblings. The clinic does not charge anything for it's services which are funded by private donations.



We also paid a visit to the Pediatric Therapy Network which specializes in Physical and Occupational Therapy for children. We have had only one session but, again, it was focused on helping us learn how to work with Parker. Joan, the therapist, is English and her accent vocabulary is comforting as it reminds us of dear English friends in Paris. We focused on sitting during the first visit and we have noted a significant improvement following that visit to the point where Parker is sitting up an-aided for several minutes now. Though a bit pricey we are trying to get a second appointment per week in hopes that it will help him progress even faster.



The flight from Europe was not fun. I had booked tickets in early February (before Parker got sick) and the best prices I found included one stop in London and then a direct flight to Los Angeles. While the older girls did admirably well, Parker and Penelope are at the age where they do not want to be restrained in a car seat or sit in one place for five minutes...11 hours ticks on laboriously slow. Having established that, it is good to be here.



We spent the first few days in San Diego and visited the place where Renee and I were married. I think Abby had visited there previously but I don't know that she remembered it. The San Diego Temple is still a breathtakingly beautiful building perched right off of I-5 in the La Jolla neighborhood. While there we saw couple after couple emerging from the back stairwell where we had emerged 15 years ago. We were incredibly young, mostly naïve, but filled with a hugely optimistic sense of hope. Going there again, now, reminded us of the promises of eternity for our family, and that sense of hope was reinforced.



In San Diego most of the other people (family--especially loads of cousins--1st, 2nd & 3rd) travelling with us were taking advantage of the long mornings to catch up on their sleep. We were still adjusting to time changes with very early rising children. The first Sunday in San Diego we had not adequately prepared to attend church but we found the closest meetinghouse on the internet and decided to pull ourselves together in whatever clothes we could and attend the 9AM service. We snuck into the back just in time for the opening song and both Renee and I were immediately reminded that there is little that is truly random in this life; the services were being translated into sign language. This specific congregation that we had haphazardly chosen to attend included a specific branch which was dedicated to members of our church who are deaf. I think the girls are getting used to seeing their parents spontaneously erupt into tears as Axelle did not insist on us to stop crying and Abby and Hannah tried to mimic the movements of the chorister who signed the hymns.



The visit also gave us a chance to thank a lot of people in person for their thoughts and prayers. We were a little bit overwhelmed by the number of people who came out of their way to tell us they were still praying for Parker. Some people we had never met or perhaps just in passing before at a family event or party became a lot more endeared to our hearts as they spoke of the love they have for our little boy. Others loving family & longtime friends. Young children who wanted to see Parker, touch him and hold him-- something tangible after they had mustered their mighty prayers for the boy they had never before met.



Since the cherished years we spent there, I have always been an ardent fan of San Francisco. However I never fully warmed to Southern California. The weather is fantastic, but there was always something about the flashy, celebrity-crazed, densely populated, theme-park atmosphere sprawl that, while entertaining, felt far too superficial to be endearing to me. My perception has changed over the last weeks. While I still get emotional when I hear Tony Bennett sing about the city by the bay, I currently prefer the more upbeat "We Love LA."

Happy Birthday Two You

Parker and Penelope celebrated their first birthday today. It is hard to frame the past year in any kind of perspective that doesn't border on surrealism.



Penelope celebrated her birthday early by taking her first steps four days before. She is amazing in that she doesn't use a couch or a chair to get to an upright position, she just stands up slowly, then after a couple of seconds takes a few steps before feeling unstable and calmly sitting back down. I don't remember any of our other children doing that.



From the time of their birth I would have bet that Parker would walk first-- it would have been a more traditional crashing into walls and falling down walk, but he was too energetic to be held back. It will be interesting to see how he learns to walk. He doesn't show any interest in crawling but if you prop him up against a couch he will hold in place for awhile before a leg will bend or he leans too much to one side.



His hearing is not yet to the level that he hears voices (60 decibels). They are going to fit one more adjustment in to the implant before we leave but we probably won't have any kind of immediate reaction even then. The ENT doctors are amazing though; they have saved all of his data to a USB key and Dr. Couloigner, the ENT surgeon, wrote a detailed description of Parker's diagnosis in English and had Renee check it to make sure he was clear. They are all very excited for us to take Parker to the House Institute in LA-- I think we mostly want to take a break from all this.



One of the final hurdles we had to get through was the check-up with the Neurosurgeon, Dr. Puget. She had Parker do a CT scan previous to the appointment and the results were not all positive. It seems the ventricular shunt is working correctly and the ventricles are slowly draining. However, the subdural area of the brain where the first shunt was placed seems to have an increased amount of liquid from last time. The liquid seems to be clear so they are not concerned that it is infected but there is a risk of pressure on the brain. Dr. Puget was very positive on her clinical assessment of him and her initial reaction was to check on the liquid in September but she wanted to verify that with her colleagues. Early this week she confirmed that we were "released" to travel for the summer but we have an appointment with her on September 1 to determine if Parker will have another shunt surgery.



The weather in Paris has been heavy and ominous. It is not extremely hot--not desert hot-- but the air doesn't move and it feels stale and muggy where even the passing of the bus provides a welcome breeze. I think we are all ready to leave for the States, but I am personally anxious that we are going to be disappointed. We we are looking for a break, sort of a time out, and I think we may just be heading for a change of venue with added complications due to adjusting to new surroundings.



Parker met with Dr. Quijano at Garches last week who wrote up his complete medical history in English for us to take to the US. At some point she was interrupted by a colleague and she introduced Parker to the colleague as the "miracle child" in the way that indicates that he was well known amongst even those who had not met him. For me this is less reassuring than it is frightening as it makes me think that we take too much for granted still. As with all miracles, the farther in time you get away from it, the less miraculous it seems-- and we have had some pretty un-miraculous days... I suppose this is part of the process.



Sina, a dear friend of ours who moved from Paris shortly after the twins were born, told us that at some point in her life she never felt she had seen miracles. She decided to write down all of the little miracles that she saw. It was only then that she realized her life was filled with them. This same friend prayed earnestly from the beginning that we might learn the lessons we needed to learn from this episode from Parker's life, not from his death... Being so close to him on a daily basis it is sometimes hard to see our daily miracle, but we are searching for it.



We are also into an interesting phase in our interactions with other people. It is hard to describe what goes through my head when someone asks the relatively benign question of "How are the kids?" The easy answer, the safe answer, is "Great, how are yours?" Of course this answer is a fabrication that is used to protect both myself and the person who asked it. On some occasions I have taken the risk to be more honest, to tell them there have been some challenges, that some remain, but there is a lot of hope. The response to this is categorically in one of two camps: those who respond with a well-meaning "That's too bad-- I hope he gets better soon" and those that listen, understand and want to share your burden, sometimes sharing with you a little of theirs at the same time.



For those in the first group, initially I was frustrated and maybe disappointed at their complete lack of understanding. More recently I have felt a bit embarrassed for having put them in a position which they were clearly not prepared to handle. I am trying to be better at discerning who these people are and responding to their question with "Great, how are yours?"



This second, rather more restricted group of people--they are my miracles.