Our goal was just to relax for the weekend-- no stress, enjoy family time, think about other things. That is not as easy as it used to be.
Parker is fine, he is progressing, strengthening, interacting-- still, he is not the same boy that he was a month ago. We love our new little Parker intensely; our 'normal' weekend activities reminded us that we miss the old little Parker in so many ways.
Part of this, maybe a lot more than we know, is due to the deafness. While he is sleeping we will speak his name loudly near his head, we will close the door to the closet forcefully, we will let Penelope cry just a little bit longer out of the hope that he will react. He lays there, eyes obstinately closed. We have a lot of hope that the implant surgery will help replace his natural hearing. Even so, he doesn't hear anything right now and part of the surgery entails permanently deadening the natural ear. We have to make the choice between hoping illogically that the ears will somehow heal themselves and potentially risking future medical efficacy, or progressing to the medically sound level of implants knowing it is a bridge that we cross only in one direction.
It is also difficult for us to gage what his medical baseline should be. We are accustomed to working by reference: remembering how we dealt with a particular situation with other children, calling friends and neighbors, or ultimately calling our pediatrician. We live without precedent now. In the past Parker's vomiting would have been as normal and as important as a burp. Yesterday he vomited twice and both times we wondered if we should call the neuro-surgeon or neurologist or return, unimaginably, to the hospital.
The most difficult thing is Parker's interaction with us. Old Parker was a very happy, active, verbal child with dimples on both cheeks that showed when he smiled. He always wanted to be out of confinement, in someone's arms or just free. Now Parker prefers laying in his bed and sleeping in a darkened room most of the day. When we pick him up he cries as if he is in pain and that cry is the extent of his verbal communication. We have not seen his dimples in a month. His countenance seems sullen, almost grumpy at some times-- as if he is angry at us for praying him back to us. At good points he looks like he is smirking, on the brink of a grin, but we still wait.
Abby can express many things verbally in child-like innocence: "I can't believe that Parker is home" or "I miss his smile and his blue eyes". I can sometimes let go of things by writing them down-- I was determined to skip a day of writing something yesterday but I feel better when I write something. Renee internalizes most everything.
We are trying to celebrate along the way as we have found by not doing so we will certainly find some reason to forget the joy that we feel, when we feel it. That has been an important part in avoiding letting sadness overwhelm and infiltrate to the point of despair.
Our burdens are our own to carry and they are appropriately weighted to us. We remind ourselves to be less critical of others. We know that many challenges lie deep within and will typically have no external sign-- appearances mean very little-- but the person who carries them knows them intimately. Each of us has burdens to carry and sometimes that will mean that we can't shoulder much of someone else's load for a period of time-- this is probably ok as long as when that period is past we strive to remember and be more actively compassionate.
In perfect, logical reasoning we know that the burdens of our family, of Parker and his parents, are minor compared to others. An unsmiling child seems almost benign as I reflect on one of the children at the Garches facility. Last Friday my attention was unwillingly drawn to her as she lay there in the large open hall where we waited to meet with the doctors. She was the only child in the room lying in one of the four beds for day patients. Her hair was done lovingly in two pigtails framing her clean round face. At the foot of her bed was a 'hello kitty' backpack and a very sophisticated wheelchair which had been decorated with sparkles and pink by a loving parent or caregiver. She somehow exuded a sense of awareness and a spirit of joy. She could smile and she did smile at anyone who would look at her or passed by. As she smiled she would lift her eyebrows and make very pronounced facial expressions; from any external sign she could move nothing else. For those who stopped to talk to her she would make some effort of talking although her lips did not move as she would make the sounds through the tube that protruded from her throat. Once in a while she would look my way and smile. On that day, it was difficult for me to smile back.
