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.
