Parker is off to a good start for 2010.
Over the holidays he had a good break and he benefited from a little interaction with his siblings.
For the new year we are slowly weaning him off of Urbanyl, one of the anti-convulsives that we had started him on in October to control his seizures. We are watching closely for signs of him repeating those but so far they seem to be absent, although he does burst into tears seemingly spontaneously once in a while which was an indication of the previous seizures.
PJ seems to be regaining some of his former self though. Most of December he was fairly reserved and almost sullen. He required two good naps a day while Penelope was on a one-a-day schedule. We had assumed this was due to him having several bouts with respiratory infections but this was one of the side effects mentioned as possible with Urbanyl which we may not have realized. In the past few days he has regained a sense of happiness, curiosity and desire. I heard him laughing heartily with Axelle earlier tonight and Hannah claims she saw him standing without support or assistance for a couple of moments.
He started back on his various appointments this week. The speech therapists and the doctors at Garches are suggesting we start to consider schools we would like him to attend. There are a few choices in Paris which would combine speech and motor therapy. One of the considerations is language acquisition and whether it would be confusing and/or detrimental for us to continue with him in a bilingual environment. For the girls this is not an issue and for most children being exposed to two languages at a young age is very beneficial. Previously when queried, the doctors and therapists did not anticipate we would need to change our approach but now they are less certain. My guess is that ours is a fairly unique situation and there is little in the way of concrete research or experience as to implanted children in a bilingual environment.
We also received another tangible reminder this week when social services sent us a disabled parking pass to display in our window. I am not sure if this was automatic or something that the social worker included in our application but we were a bit taken back by it. It is just a blue card which is perhaps 5" by 7" with the standard wheelchair on the front and disabled spelled out in a dozen languages. On the back is a picture taken in an automatic photo booth with half of Renee's head clearly in the picture. Her bright smile is clearly a somewhat unsuccessful attempt to get Parker to respond and look at the camera and is conspicuously incongruent with the somber card. We did put the card in the car but so far we have been lucky enough to find an open spot on our street without being compelled by the handicapped spot that sits 40 feet away from our apartment on the corner of our street and Wagram.
It is somewhat difficult for us to accept the fact that there is an increasing part of the people we meet who only know us as we are, not as we were. Although we feel changed and challenged by the experiences we have had in 2009 we realize that many of those around us have no frame of reference for where we are now, and where we have been. I think that bothered me before but now I accept this as a fact of life that will only be amplified. It also reminds me that others have trials as well that they have had to manage. Some, like ours, seem to stem from a single event with far-reaching consequences. Others have more gradually developed and internal trials that are likely even more painful to bear as these are often carried in deep solitude.
I remember having a theoretical discussion many years ago on whether, given the choice, I would prefer being blind or deaf. In that comfortable, theoretical place I always said I would prefer blindness as I thought that being deaf would be so solitary, so lonely. I also based this on an almost emotional attachment to music as an conduit to spirituality. I was reminded of that attachment the past two Sundays at church, but today especially.
For the past several months, Abby has been singing with the choir of our Paris church congregation with a friend of hers, Lauren, who is a couple of years older. They practice right after church and Renee and I chat with friends while the other kids play hide and seek in the courtyard of our converted church building. Today, I could see that the choir had finished and I went to get Abby but she was not in the room with the others and I was told that she had left. I found her in a room by herself, eyes red and swollen. She ran for my arms and I sat down and held her while she sobbed heavily. Trying to solve the problem I finally asked: "Did you have a fight with Lauren?", she shook her head no. A few minutes later I asked again what was wrong and she squeaked out, "Parker". I held her a while more, wondering what triggered this and asked if it was something he did or something someone said about him and she responded through her tears "We were singing 'Souviens-toi'". Then the tears started down my face as I comprehended that my little 8-year-old girl understood a lot more than I gave her credit for, and she was much more like me than I had thought. This song is very special to us and while previously Abby, with her sisters, stared at us in confusion when we cried as it was played at church, something triggered in her that same feeling.
I will not try and describe it but have copied the words in French along with my best translation into English:
"Souviens-toi, mon enfant, tes parents divins te serraient dans leurs bras, ce temps n'est pas loin. Aujourd'hui, tu es la, present merveilleux, ton regard brille encore du reflet des cieux. Parles-moi, mon enfant, de ces lieux benis car pour toi est leger le voile d'oubli.
Souviens-toi, mon enfant, a l'aube des temps, nous etions des amis jouant dans le vent. Puis un jour, dans la joie, nous avons choisi d'accepter du Seigneur le grand plan de vie. Ce soir-la, mon enfant, nous avons promis par l'amour, par la foi, d'etre reunis"
Remember my child, your divine parents holding you in their arms not so long ago. Today you are here, marvelous gift, eyes twinkling with the reflection of heaven. Tell me, my child, of these blessed places -- for you the veil of forgetfulness is thin.
Remember, my child, at the beginning of time we were friends playing in the wind. Then one day we joyfully chose to accept the Lord's plan of life. That night, my child, we promised that by love and by faith that we would one day be reunited.
"Souviens-toi, mon enfant, tes parents divins te serraient dans leurs bras, ce temps n'est pas loin. Aujourd'hui, tu es la, present merveilleux, ton regard brille encore du reflet des cieux. Parles-moi, mon enfant, de ces lieux benis car pour toi est leger le voile d'oubli.
Souviens-toi, mon enfant, a l'aube des temps, nous etions des amis jouant dans le vent. Puis un jour, dans la joie, nous avons choisi d'accepter du Seigneur le grand plan de vie. Ce soir-la, mon enfant, nous avons promis par l'amour, par la foi, d'etre reunis"
Remember my child, your divine parents holding you in their arms not so long ago. Today you are here, marvelous gift, eyes twinkling with the reflection of heaven. Tell me, my child, of these blessed places -- for you the veil of forgetfulness is thin.
Remember, my child, at the beginning of time we were friends playing in the wind. Then one day we joyfully chose to accept the Lord's plan of life. That night, my child, we promised that by love and by faith that we would one day be reunited.
