Parker is doing better this week.
His respiratory illness seems to have mostly cleared up and he is back to exploring his world.
He hasn't achieved any huge milestones recently. He is crawling, with great coordination, and pulls himself up to standing. While in a standing position supported by our knees or couch or other, I noticed he made conscious decisions today to let go & reach out for our hands or another couch with one arm while leaving things behind today. Of course this means he is taking one or two very uncertain steps while still holding on to other objects, but he wants to move forward, and he is trying to do so. He is doing better at getting from the standing position back to the ground to crawl. Previously he would fall over like a board that was leaning against a wall would fall down. Parker would come down hard on his side and bounce his head on the ground. He has progressed in this area and now bends fully at his waist with his arms and legs both extended rigidly in a upside-down V with the floor. He will then slowly lower his head to the ground and then roll/fall to the side, or slowly fall backwards onto his backside. I am doing better at keeping myself from helping him down to the ground and am hoping he will soon figure out how to bend his knees. I think this would also help him with walking as he lacks any sense of real balance.
Parker visited Dr. Kossorotoff, the Neurologist, on Tuesday this week. She confirmed the EEG he had undergone at Thanksgiving showed everything was under control and suggested that we could start tapering off one of the anti-epileptic drugs in the New Year. She suggested that we should probably focus on one PT session a week -- which was pretty much where we have been for the past month anyway. Since he had progressed alot in motor skills since she last saw him in September/October, she suggested that we start focusing more energy on occupational & speech therapy from here on out. She says he will do much of his own physical therapy just discovering things with lots of sister stimulation and curiosity at home.
Renee has discussed with the professionals this past week the possibility of finding a physical therapist in the neighborhood rather than going to Garches on a weekly basis and possibly setting up a routine program outside of the office visits of specific things we can do at home for Parker by way of therapy. The family ENT re-confirmed his opinion of Parker's speech therapist as being competent, and well-known in the community for cochlear implanted deaf speech therapy. The discussion of placing Parker into a deaf school or hearing impaired school is back on the table now that he is well enough in other aspects of his care. This would likely be a few sessions/week as he is just 18 months now, but we are discussing the possibility of placing him in a specialized school next Fall with a goal of having him integrated into a main-stream school as soon as possible (if ever possible).
It is hard to visualize him walking with his balance so limited at this point. But truthfully a few months ago, it was not clear to anyone whether he would crawl. We delight in the idea of him walking in 2010, though what I really wanted this year for christmas was for Parker to walk.
We have some Christmas traditions that we have maintained consistently over the years.
For my childhood I remember having to wait what seemed like hours after we woke up on Christmas morning before we could get to the opening of presents. After eating breakfast, we would be allowed into the tree room one at a time, youngest to eldest, and then open gifts in the same order-one package at a time. This tradition has continued in our family here. Inevitably you would have a runner-- someone who would get into the room unnoticed and sneak a peak before one of the parents does a headcount and goes in after them. Today Parker was our "runner" and he banged through the double doors swinging them wide open and crawled several feet into the salon where our Christmas tree stands until his older sisters eagerly retrieved him.
We picked up another tradition from my brother and sister-in-law, Mike and Katy: Each year, you find an ornament that represents some important event from that year. We have three ornaments representing moves we have made in our married life, four ornaments for each of the years of birth of our children, and the rest have typically been something from a vacation we took sometime during the given year. This year was simply impossible to find something that captured the essence of the year. Firstly, we have had some serious issues with managing our allotment of time just in getting through to Christmas and things like Christmas cards, stocking stuffers and ornament shopping didn't quite make the priority list. Secondly, we struggled with the concept of an ornament that would represent not just a one-off event but a fundamental shift in our lives. Finally, an Eiffel tower or cable car ornament are reasonably easy to find and one can readily associate a postive significance with this; meningitis, deafness, seizures-- it is difficult to establish a clear meaning with those elements.
Lacking in any other ideas, I took the toy cochlear implant from the stuffed koala which we had received after the implant surgery. It was not complete and few people would realize what it was but it was like so many things recently-- the best we could do in the current circumstances.
A few days later we received a package from my parents. It contained two books, a DVD and an ornament. It took me a moment to recognize what the ornament represented and it wasn't until I saw that one of the books was Dickens' Christmas Carol that I understood. Renee's eyes met mine and with tears in both of our eyes, she said, "It's Tiny Tim." I read the book to the girls that night, and, as it is with many things over the past ten months, it meant something different to me this year. Simple sentences like "Spirit, what will happen to that tiny lad?" and "God bless us every one" were read through watery eyes.
Although it is not a perfect metaphor and the ornament will no doubt be missed by many; there it sits in the middle of our tree: A man dressed in 18th century attire with a wreath in his left hand and a a young boy on his right shoulder. The boy is holding a small crutch in his right hand.
We have some Christmas traditions that we have maintained consistently over the years.
For my childhood I remember having to wait what seemed like hours after we woke up on Christmas morning before we could get to the opening of presents. After eating breakfast, we would be allowed into the tree room one at a time, youngest to eldest, and then open gifts in the same order-one package at a time. This tradition has continued in our family here. Inevitably you would have a runner-- someone who would get into the room unnoticed and sneak a peak before one of the parents does a headcount and goes in after them. Today Parker was our "runner" and he banged through the double doors swinging them wide open and crawled several feet into the salon where our Christmas tree stands until his older sisters eagerly retrieved him.
We picked up another tradition from my brother and sister-in-law, Mike and Katy: Each year, you find an ornament that represents some important event from that year. We have three ornaments representing moves we have made in our married life, four ornaments for each of the years of birth of our children, and the rest have typically been something from a vacation we took sometime during the given year. This year was simply impossible to find something that captured the essence of the year. Firstly, we have had some serious issues with managing our allotment of time just in getting through to Christmas and things like Christmas cards, stocking stuffers and ornament shopping didn't quite make the priority list. Secondly, we struggled with the concept of an ornament that would represent not just a one-off event but a fundamental shift in our lives. Finally, an Eiffel tower or cable car ornament are reasonably easy to find and one can readily associate a postive significance with this; meningitis, deafness, seizures-- it is difficult to establish a clear meaning with those elements.
Lacking in any other ideas, I took the toy cochlear implant from the stuffed koala which we had received after the implant surgery. It was not complete and few people would realize what it was but it was like so many things recently-- the best we could do in the current circumstances.
A few days later we received a package from my parents. It contained two books, a DVD and an ornament. It took me a moment to recognize what the ornament represented and it wasn't until I saw that one of the books was Dickens' Christmas Carol that I understood. Renee's eyes met mine and with tears in both of our eyes, she said, "It's Tiny Tim." I read the book to the girls that night, and, as it is with many things over the past ten months, it meant something different to me this year. Simple sentences like "Spirit, what will happen to that tiny lad?" and "God bless us every one" were read through watery eyes.
Although it is not a perfect metaphor and the ornament will no doubt be missed by many; there it sits in the middle of our tree: A man dressed in 18th century attire with a wreath in his left hand and a a young boy on his right shoulder. The boy is holding a small crutch in his right hand.
***
Of course we all ask in some form or another, "Spirit, what will happen to this tiny lad?" When I see Parker where he is today & where he was exactly 10 months ago today, I see many things.
I see his movements brusque, sometimes awkward. But I see him moving. February 25th, he was not doing much moving in any sense.
I see his eyes, full of love & hope & pure bliss, when I pick him up from his crib, or pass him in the hallway. End February his eyes were not open to see.
I see his smile, huge & toothy & all encompassing. In the ICU that baby boy in the bed with all of those meds & cords & sensors & treatments was not smiling, and neither were we.
I see his twin run circles around him, climb on him, give kisses to him, tackle him, and he cries. In February I realized that really sick babies do not cry.
I look at him & see dreams undone, but I see death & rebirth. I see hope & faith, not only my own that has brought this child back to us. I see love & sacrifice & prayer & fasting from many many people who selflessly gave their time & learned something about his or her own life, or character, by helping someone in need, even if it is just a prayer in their behalf.
God has blessed us, every one. Every single one. Parker again & again, but me, and John, Abigail, Hannah, Axelle, and Penelope. He has blessed us through this difficult time, through limitless love & support. Through this long 10 months.
I pray mostly that He will continue to bless us every one. But that He will bless Parker alot in the coming 10 months, and the 10 months after that & the 10 months after that....and after that & that.
It is Christmas night. I think of Mary. The mother of the Christ-child. I sit in my very sacred place on this Holy Night. I cannot imagine what she felt to hold her baby who was literally half-Deity, the responsibility & the honour that must accompany that. I do not wish to compare my son to the Saviour of the world. But I can, perhaps, begin to comprehend what it means to give up your son (or part of him-in my case the hearing part and the vibrant, moving, running parts...) for things that are out of this world. Or give different, pointed meaning in this world, and try to make sense of them. All the while I hear the words, "For unto us a child is born, unto us a son is given!" What depth and dimensions that translates into this year. "Unto us. A son is given. The Prince of Peace".
Angels We have Heard on High, I heard them loud & clear 10 months ago. As time goes on, I hear them more quietly, and I strain at times to hear them at all, but I can hear. I can hear them. I hear them still. Echoing their joyous cry, "Hallellujah. Hallelujah."
Hallelujah, God Bless us every one. God Bless Parker. Merry Christmas.
***For those of you who closely follow these writings, it will be easy for you to tell the difference in writing styles. We both wrote this update. John usually asks me to proofread his posts before publishing. This time I had to add to it. He started. I finished, to lessen any confusion. Merry Christmas & God Bless you
