Silent Reflection

Parker is doing awesome. He is walking with increased confidence and stability. He can stop, stand and turn around. He can pick things off the floor from standing. He can kick a ball.

He still tumbles, often. He has problems with different surfaces responding differently: the irregular cobblestones in the church courtyard, grass in the park, rain-soaked parking lots, wet tiles at the swimming pool.

He runs. Head back, wide grin radiating joy as if he was re-creating a scene from Chariots of Fire. It frightens me as sometimes...often, he falls. He seems invisibly pulled to the left and he reaches his arms to the right as if there is an invisible beam for which he is desperately straining to correct his course. The tiniest of pebbles brings him down. Sometimes he cries and looks for mama to pick him up. Sometimes, more and more often, he picks himself up and continues to run.

He is getting very strong and it is increasingly difficult to hold him when he does not want to be held or stop him from going out the door when he sees everyone else trailing out for the morning.

He throws everything. He loves balls and dogs. He climbs on everything that is climbable. He plays in the garbage and the toilet whenever possible. He is fascinated with electronics. He bangs the screen of the television or computer. He walks off with anything that he can and we spend a frustrating amount of time looking for remotes, telephones, the computer mouse, iPods, etc. He has been known to hit his sisters, playfully. He is very different than any of his sisters at this age. I am told this is normal for a boy. As he is the only one I have, I think it is amazing.

He is still medicated. Tegretol three times a day and Micropakine in the evenings. These are to control his seizures which we have not seen in more than a full calendar year. The Micropakine is difficult to administer as you give it to him with yogurt or applesauce and sometimes he is not interested in yogurt and applesauce at the end of the day. His EEG was normal. Last time that was the case we decreased his dosage and there were some spikes of concern on the follow-up EEG. I am happy to keep his dosage where it is for now.

His speech is delayed, obviously. He has a limited but growing vocabulary: ball, Abby, mama, dada, au revoir, outside, Mickey Mouse, no, ya, doggy, hi. Yesterday we were reading a Dora the Explorer picture book and I would repeat several times loudly "Dora" "Monkey" "Bird". He made a good effort at repeating "Dora" and "Bird" and was very focused on my lips.

He is signing much more. As we are transitioning a bit from American to French sign language I guess he is signing a lot more than I even realize, but I do get "drink" "out" and "all done".

Parker is very hard to describe. He has a very particular spirit about him which I can't differentiate whether it is because he is a series of miracles in which we were intimately entwined or if he is just a gift. Sandrine Meunier, a dear friend of ours since we moved to Paris, used the term "joyeux": Joyful. I cannot think of any better description.

I am on a train between London and Paris today. That in itself is not exceptional as I am a seasoned traveler on that route as of late. But today is Sunday and I am going London to Paris and back to London.

Why I am on the train is one of those little miracles that initially presents itself as anything but miraculous.

As the kids are out of school for the next week we decided that we would pack up the family, and move to London while I work from our offices there. We targeted a hard start at 7 AM yesterday in order to drive to the French city of Calais and make our 10:50 Eurotunnel crossing. At 7:35 AM I was in the car fully packed with kids and luggage waiting impatiently for Renee to finish a couple of last minute things. She knows that 7AM really means 7:30AM is going to be ok. In her eventual rush out the door she forgot a couple of things; one of them being the charger for Parker's cochlear implant batteries. We first realized it when the implant started flashing that steady red light which indicates that he is 10 minutes off of being completely deaf. We re-assured ourselves that we had a couple of spare batteries and our friends joining us in London mid-week could swing by the apartment and pick up the charger. We also thought that it might be an appropriate to mark the anniversary of this period by observing some time in silence. When the lone spare battery started flashing as well as it was also depleted, Parker became agitated and confused. He reached for his hearing aid to be put on and looked at us pleadingly. We made other plans.

Renee, of course, was ready to drive back at midnight to resolve the situation. I brooded, checked train schedules, feeling cheated in anticipation of a day of rest with the family that I see mainly on the weekends. At 6 AM I woke up and asked Renee to drive me to the nearest train station. Parker was awake so he accompanied us; markedly less vocal but throwing string cheese from the back seat at my head and laughing all the same.

So here I am, 6 hours round trip of trains ahead of me and time to think.

Two years ago today we were at Disneyland. I was not happy. Not that day, not really at all. No one thing was particularly wrong but more a collection of issues related to being thirtysomething out of shape, a job that was comfortable but not really as challenging as it once was, and the weight of taking care of a family of seven's financial, emotional and spiritual needs. Renee and I were operating on separate paths. She was still working through the day-to-day management of infant twins in addition to three other children. When I was home I was focused more on the older girls. We were working partners in the same venture but not taking care of each other at all and probably begrudging the other of their easier part in the partnership.

My relationship with God was cordial but not personal or meaningful. He knew I was there and I knew He was here but I felt like I could manage on my own and had capabilities to do so.

Then that changed.

I look cautiously back at the things I wrote nearly two years ago. I am highly critical of the style and obvious grammatical errors. I am shocked that in some instances I share too much, others that I shared nothing meaningful. I don't weep but I feel things deep in my soul when I look at the words and the pictures. I remember.

This past week, except for a one day trip to Brussels, I spent in Paris. Tuesday night to Thursday morning I was in the hospital with Abby who had a surgery propping up her right ear drum with a piece of cartilage and putting a tube in to drain fluid. It is her third or fourth surgery of this type but this one is more intense. She had a massive head bandage which reminded me of those you would see in war movies but with a good crop of dark brown hair flowing out of top. Genetically, this is my fault; I have always had ear problems. I took advantage of being at the hospital to make an appointment with and ORL/ENT doctor. My ears had been blocked for a couple of weeks and although I had been treated for bronchitis it seems that I had developed a fairly nasty sinus and ear infection. Abby and I spent the day talking to each other very loudly and often repeating ourselves when the other would say "huh?". Most of the day we both slept or rested in silence. It was a needed break which I would not have otherwise taken and reminded me how amazing each one of my children is.

Abby is showing more and more maturity each day. She has this amazing moments where she engages in deep, well-thought and surprisingly adult conversation. She craves responsibility and is bitterly disappointed when she does not feel she lives up to what she expects from herself, or me. I have terrifying bouts of panic when I think that she and I will one day no longer be co-dependent because I think I need her more than she needs me.

Hannah has more love than any one person I know. She has an intense need to take care of me and calls me whenever I am travelling. She cries with sadness when I am gone too long. She takes care of everyone else. I cannot imagine ever being able to deserve the affection that my second child heaps on me.

Axelle is a bouncy, scrappy, undemanding bundle of independence and happiness. She sings whatever song comes into her head as if she was the only person in the room. On the drive over she christened our new heretofore un-carsick vehicle. She didn't cry, didn't scream to take her clothes off. She sat patiently there. Ten minutes later she was re-clothed and running around as if nothing happened.

Penelope is a stick of soft butter that folds into you as if she needs to be baked into your chest. She thinks that she is so big and always right. She is her brother's sparring partner, protector, part-time mother and most constant friend. I look at her and see me looking back.

Renee is unbelievable in the absolute sense of defying belief. She manages a household that teeters somewhere between really busy to chaos. Despite all the rest of the responsibilities she still somehow figures out to have people over for dinner or maintain a sense of connection with friends. She manages to look amazingly beautiful and put together and laughs off French men who pick-up on her with a pointed "if you only knew the baggage I come with." Luck for me they don't know the baggage is worth it. Some days are better than others. The last few weeks she has been a consistently radiant, confident women that lights my life, and my way.

It is now Sunday afternoon. I am back on the train headed to London. Parker's precious battery charger in hand and Axelle's equally precious American Girl doll as well. Hannah's doll here as well as I didn't know which one was Axelle's so I had to bring both.

I have been surrounded by strangers today but alone, reflecting.

Today, somewhere across the oceans in Singapore, Melissa Bradford gave a talk on the eternity of family. I have little doubt that the talk will be a departure from the typical Mormon discourse on the happiness and future blessing of having a forever family. While this is one of the particular trademarks of our particular brand of Christian gospel, I suspect Melissa will share a deep, soul-reaching expression of how the eternity of the family is another element of the life sustaining hope offered by Christ's atonement to those who have lost and yearn for the restoration. Few in the congregation will have understood what this means. Her eldest son, Parker, would have been 22 today. He died nearly 4 years ago in a drowning accident saving the life of a friend. That he shares a name with my son is no coincidence.

Two years ago today, my son Parker became listless and unresponsive on our outing to Disneyland. He woke up that evening in a screaming panic of fever as the first effects of Meningitis started ravaging his 8-month old body. The weeks following that are not ones I wish to repeat or relive. There are many miracles there but faith precedes the miracle and desperation often precedes faith.

Today my son is restored to me. Today much is restored to me. Today I am happy.

Normal

What is normal?!

Why do we aspire to be normal, or sometimes try so very hard to be different?

I had a particularly hard 24 hours after taking Parker for his EEG check up in Garches this week. It's not so much that he is completely exhausted by the time we even get there, but that all of my existence when I look into his eyes is wondering if this fatigue will induce seizures in my boy? Then I wonder if it is all worth it?

If dragging him there, forcing him to stay awake, drugging him to sleep, then forcing him to wake up is actually telling us anything worthwhile at all in his brain waves.

The doctors have even admitted to me that "we just don't know all that much about brains" anyway...(an even greater testimony to me that these bodies of ours are patterned after God's, and that these brains are capable of so much more)

And it was not only that I enter these situations now with hopelessly vague feelings-so difficult to pinpoint, but equally difficult to articulate. It's definitely NOT indifference. And I am not sure if it is FAITH. But it's sort of a quiet ACCEPTANCE of God's will. That I've realized I've walked in the shadows of death. And though it was harrowing, I survived to speak of it. And Parker is thriving (at the moment)...So, I just take each exam with stride, and step forward, try to straighten myself up, dust myself off, and catch all the fly-balls in left field that I can...realizing that sometimes I may miss one or two.

BUT I was completely out-of-sorts, a walking zombie-mommy-going through the motions in my life for a good 24 hours after this visit. And I wasn't sure if it was related to emotional or physical exhaustion. Then I realized it was actually the weighty-ness of the many SEVERELY HANDICAPPED children we encounter at Garches. And the battle-ax nurses who seem to do their jobs with no emotion. AND it's the neuro-stuff that gets me more than anything else. A wheel-chaired child is one thing, but a trembling involuntary movement-ed child is something all together different.

AND their mamas. As I drove into the parking lot, I saw a woman holding an infant next to her car, weeping. Then, as we waiting for the elevator in the Secteur Marron where we go to see Dr Q, I heard another mother asking doctors and nurses (and anyone else who would listen) what she could do to "soulage"(ease) her son's discomforts. I pretended not to hear, or felt I should not be listening. But it stabbed deep into my already-cut-and scarred-and re-pieced together heart and soul.

I left there beaten, torn, exhausted.

For wonder on how these children are meant to learn as well as teach such difficult lessons in life? And how their caretakers sincerely take these lessons to heart.

So last night after 10 pm, I got an email from Dr Q stating she couldn't possibly wait to tell me that she got the results from Wednesday's EEG, and they were NORMAL.

Huh?!

I have a hard time believing it.

I've come to terms with the fact that my son may not ever hear biologically (though I'm still holding on to stem cell research hopes). That he MAY not ever speak or hear like we do, even with his beloved (I looooovvvveee that thing) CI. That he may live in a deaf community who only signs, and marry a deaf woman, that he will ALWAYS be discriminated against. That people will likely always ask, "What is that flashing red light above his right ear?"

And I'm always surprised that they are so intrigued by it, since it's "Just Peej". I scarecely notice it, except to see if it needs readjusting, or yogurt wiped off of it, or whatever... When he's not wearing it, I feel that integral parts of him are missing now.

BUT WHAT IS NORMAL?

And what is our new normal?

And are we even SEEKing normal anymore at this point?

Or para-normal?

He's clearly NOT normal, this boy of ours. Rather than saying "normal", I prefer to use the terms "typical" or "ordinary"..and when referring to Peej, I usually say "EXTRAORDINARY".

NOT FAITH, ACCEPTANCE BUT SEVERELY HANDICAPPED AND NORMAL MAY ALWAYS SEEK EXTRAORDINARY.

But I surprisingly burst into tears of gratitude when I read her words. She said she was not in any hurry to see Parker now, knowing that "his head is working as it should".

This is a great way to start the 2 year-anniversary of his illness. Welcome to Ski Vacances Scolaires! (Though we are not skiing!) The kids just got out of school for their 2 week winter break. And last year, I was still in a very hard place. This year, I am so thankful for God's mercy and love. And I see all of Parker's progress as hand-picked blessings from my God.

He answers prayers, sometimes in his own time. And that, of course, is normal. The highest, purest level of normal.