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