Parker has been taking it easy the last couple of weeks.
With the older girls out of school we had been out of Paris for two weeks and somewhat detached from the different routines and therapies. Now we are back into the full swing.
PJ still struggles for balance when attempting to walk. While it is clear that he has sufficient strength in his body, the coordination in his movement and the fact that he flexes his feet out to a pointed position rather than up causes this to remain a challenge. His motivation is certainly there and when you hold his hands he moves forward with determination and speed but still lacking in direction and skill. When I try and allow him to test his balance by holding him more at his waist, after some short time he walks himself into crawling position where he feels most comfortable. I also attempt to walk with him holding one hand which works for a few steps before he starts to circle around me like a tetherball around its pole. On the soft grass outside of our apartment where we were on vacation I decided to let him go it on his own; he ran three steps and then crashed headlong into the ground barely wimpering. If determination was the only requirement we would be past this milestone. It seems like it is going to take some time.
While he lacks balance, he is a proficient climber. Our vacation apartment was on two levels and he zipped to the top of the tile stairs to the second floor almost as fast as his twin sister could climb them walking. When he turned to go down the stairs he started out head first before we'd catch him. Coffee tables, armoires, lawnchairs, countertops, sofas; somehow he manages to figure his way to scale these items only to get to the top and not know how to get down.
Parker loves water. In the pool float we have for him he leans forward and thrashes his hands in the water and screams for joy until the splashes force him to lean back, blinking the streams of water out of his eyes. He recovers, and then goes right back to it. While the joy he feels at this is evident, it is one of those moments where I have to stop myself from being a bit sad as I think that somehow his ability to experience this activity is limited as we have to remove his implant in order not to damage it while he is swimming. He doesn't hear us cheering him on, he doesn't here the sound of his sisters screaming and playing, he doesn't hear his own splashing or peals of glee. He doesn't seem to mind and continues as if this is normal. Maybe, in time, I won't mind either.
He has been slightly less verbal in the past few weeks. Part of this is probably due to the lack of dedicated speech therapy while on vacation. Renee also suspects that part of this is due to the fact that we are increasing his tegretol dosage (one of his anti-convulsive medications) in order to eventually ween him off of micropakine. There is a nervous sense of hope around this as we are happy to have him on as little medication as possible but attentive to small twitches that might signal a return of the convulsive behavior. In the fall we had three different medicines to control the convulsions. The neurologist who we met with just prior to leaving on vacation said his EEG was the best one she had ever seen for Parker.
Back in Paris the occupational and physical therapists were encouraged by his recent progress. The physical therapist told Renee that Parker has met all the milestones she had wanted him to before the summer, so they now need to fix new milestones.
Spring break vacation was a priority for us this year. The girls have two weeks off and we had planned to be away for the entire two weeks. When the ash cloud from a volcano in Iceland grounded our flight and without a clear view of when we would be able to actually leave, we packed our family of 7 and all of our gear into our mini-minivan and headed out for a 12 hour drive to Madrid where we were able to catch a flight to Mallorca only one day late. As work has been fairly intense for the last several months, I think we all needed some down time to assess where we are and where we need to go.
The last two months have made me reflect on the very different place we were a year ago. I have tried to go back to the blog entries from last year to remind myself of that place. After the first couple of days I stopped. That place is not the same place we are now and maybe I am not ready for it yet but it wasn't easy reading.
At the end of February as we started to grow melancholy over thoughts of the previous year, we remembered our friends who were visiting the gravesite of their Parker. It would have been his 21st birthday, an important age in a young man's life in our faith. Traditionally, at 19 most young men in our church will leave home for two years devoted to God as a missionary; at 21 they would typically return home.
On that same weekend we got news from both Renee's cousin, Jamie and my sister, Spring who had given birth, both of them to baby boys.
But on that same weekend I looked at our Parker, and his twin sister Penelope, and his other sisters Axelle, Hannah and Abigail; each one so perfect in spite of their flaws. And I felt joy.
I realize that it has been some time since I last wrote anything in this space. Mainly due to a combination of not taking time to reflect and not having compelling information to share. Today I felt inspired by the story of another person whose story we have been following who has started her new life. It is worth the 8 minutes on her blog http://nieniedialogues.blogspot.com/
