But it's not really a race, is it? The girls would sing the Hannah Montana song to me, "It's all about the climb!"
So I have been debating these past weeks on whether I need to be a very organized, strict & efficient mother, or more of a warm & cuddling, sit-on-my-lap-kinda-mom. It's impossible for me to be both. I hate not being able to do it all. I am accustomed to doing it all. I always have. I always will try. But it seems I cannot actually physically, emotionally, spiritually, psychologically DO IT ALL.
There is just too much to do, too much to worry about, too much homework, too many appointments, too many projects undone.
So, I have been thinking what on earth I could say about Parker and us for the past few weeks, and it is difficult to find anything monumental to share. My mom keeps asking me if he is making progress. If the answer is still yes, we are making forward steps, even if they are baby steps.
I am discovering I am not a patient person, contrary to my prior beliefs. I have realized in the past few days that I try to run this house like a tight ship, barking orders & bossing people around-big people and little people. I have been frustrated because they don't seem to respond the way I think they should, or expect them to. I have noticed recently that I do not like the way the girls speak to each other, grab things from each other, the general lack of sharing, arguing, shouting, etc. Then I hear myself shouting at them to "Be nice" or "Go to time out!", and how can I be surprised that they grab things from each other when I have the same impulse to grab my phone from their grubby little hands after asking for the umpteenth time to stop playing & do homework or practice piano or come to dinner....or whatever.
We had a lovely 2 week break from school, we visited dear friends in 3 different countries & it was a reprieve to be with people who care for us and we sensed a genuine love from them and it was a sort of balm for me and our wounds and all we have suffered the past year. And it was a good distraction. A distraction from the running to and from constant appointments, and worry & busy city life.
I went to the temple in Frankfurt. I have only been one other time since Parker was sick. I feel direct inspiration and peace & love & meaning there. I felt many times the words come to my mind, "Walk forward with faith" while I worshiped there. I have been caught up on the fact that I want Parker to walk... and I fear he is still far from walking. He was strong before vacations, but seems weak & tired now, a bit disconnected, I can't quite put my finger on it. He is not so smiley or active. His movements are slower, he is slower. His reaction time is slower to respond to our speech. On Monday he went to occupational therapy and speech therapy for the first time in 2 weeks. The occupational therapist said, "He seems tired", and the speech therapist said, "Making progress".
So the control freak part of me decided to make charts for everyone, reading, piano, homework,etc, etc and want to make a "walking chart" for Parker to get him stronger, I am not sure if it is better just to sit & love & hold everyone more, and stress less. And press forward with faith that all will be well, and realize that I am refining & growing & learning patience, whether I want to or not. And just hold on to my hat & enjoy the ride. It's all about the climb, right Miley?
Here is the scoop since no doubt you are dying to know:
EEG-Good reports, will not do another before visiting Neurologist at Necker mid-April, Neurologically, when Parker gets a little stomach bug or conjunctivitis or cold, it knocks him out. He seems very very tired & sick. I think that he's fighting a few different things this week, which slow him down alot. Vaccines to boot.
Anti-convulsives-changed one from a liquid form (tasted awful) to a more difficult to administer powder form, seems fine.
Hearing-still responding to his name, and laughs & dances when we sing, but when he is bored or frustrated, he pulls at his ears to throw his hearing devices in protest. Got the next rendez-vous with the head speech therapist at Necker for 6 month-evaluations in April. These are always very stressful for me, since I expect her to show Parker numerous animals & ask him to find the cow or the duck, etc. I am not sure Penelope could even do that at this point. I also polish up on my signs before going in & add more audio-visual games into our daily routines.We need to get him signing & vocalizing more. He will vocalize sounds and "call" you when you hide around a corner to make you reappear. Before vacations, I saw him sign "Thank you" for the first time. I've seen him sign "Bonjour" and "more" about 5 times each. Today I said while he was sitting on my lap (without any signing or miming), "Can you clap?" and he did! We were all pleased. We all clapped for him.
Deaf schools-we visited the 2 options in Paris for Parker next year. Unfortunately we loved both of them. We need to make a quick decision, but it seems daunting. I sort of wish we hadn't even visited the 2nd school, since I loved the first one so much. The methodology is completely different for the schools, which actually makes it more difficult to decide. The first seems to be more global communication-using some signing and audio-visual cues while teaching Parker to listen & follow commands and eventually speak (in French). This one also seems to encompass more and different "handicaps" (I still can't say or write or think the word without something in my mind & stomach turning over). But the Director of the school was absolutely warm & loving & genuinely concerned. He listened to us babble on about Parker's illness & history for 2 hours. Then he took a big breath & said, "Man, you guys have been through the ringer!" He was very attentive & responsive to our every question. The second school has a different approach. They teach cued speech, which from what we can undertand is using a very few signs close to the mouth to distinguish between different sounds that look the same while reading lips, the "buh" and "muh" of "B" and M" looking the same visually, but meaning 2 very different things actually. The Directrice was very clean, efficient, not warm or fluffy at all. We sat down in her office & she said, 'So what can I do for you?" She talked AT us for about 45 minutes & then said, "Well you will need to make up your minds rather quickly since there are not many spots left". I liked her efficiency, but she was not fluffy at all.
Motor skills-Parker did his most recent physical therapy session at Garches just before vacation and the therapists said he is strong enough now to walk, so it appears that it is his balance that is playing in his non-forward-upright-progression at this point. He will pull himself to standing, even up against walls and slowly edge his way along. He will also move from one object to another while standing, but needs a steady hand. He is so pleased when you hold his hands to walk him, he squeals with delight & takes several quick, forward steps. I think he is pleased to be up, but the physical therapists say he needs to focus more, and slow down. The physical therapist also said she didn't like his "strategy" and way of thinking because when we moves forward, he often just goes over a big obstruction or toy or whatever rather than going around it. I sort of like that he wants to plow through things & get to his goal.
The pediatrician this week said, "Il faut se battre". We continue to fight.
So I am torn between the cuddly-sit-down-and read & play with my kids and being efficient making & setting goals & charts to accomplish these things. I guess in the end that is the decision we must make for Parker's schools, too. Do we go fluffy & loving, or efficient & cold? In any rate, we still keep fighting & climbing.
