Christmas 2005
What a year this has been. It is nearly three months since Mason had brain surgery. We are still amazed the change in this little boy. It was about three weeks in the beginning that we did not see any seizures. Since then he has had extremely mild seizures in the mornings when he wakes up, sometimes barely noticeable. Mason has been fighting a mild cold in the last week or so, and has been waking a lot in the night for the last few days, having quite a cluster of seizures each time – still very mild in form. We see no seizures at all during the day. It still feels very very strange to not have to watch him every second of the day, concerned for his safety. I can even relax when he’s out of my sight as far as his behavior is concerned. Before surgery, I never knew what he would get into or on top of. Always looking for sensory input. Balancing on the back or arm of the couch, licking the windows, obsessed with buttons on the TV and stereo, escaping if we forgot to lock a door. (all our interior doors have keyed locks, as well as both sides of the deadbolts)
Now, I can leave the inside doors unlocked, and he seldom gets into trouble, although I have heard a flushing sound occasionally lately!
We have been doing something in the last few weeks that we haven’t done in over 5 years. Sitting at the dining table as a family. Mason now sits with us on a chair, calm and relaxed for the whole meal! Then when he is finished, he carefully picks up his dishes and carries them (elbows straight out) with great caution to the kitchen. He has even learned to say chi-chin for kitchen. This is a big change from saying “aw-done” then tossing his dishes to the floor while watching the gravity/rebound experiment. He used to have a seizure with most meals with face-plants in his food, so this is so relaxing now!
He continues to learn new things at a pace so much faster than he ever has, although not at the speed with which a typical child does. He follows the routines at school very well, now. Sometimes I watch him through the grade one window with his friends. He will sit at his desk when they do, while he does his “work”. Plays at “centers” he has chosen. His teaching assistant can often stand across the room from him, no longer needing to keep him safe from seizures, or redirect him from challenging behaviors. He is very involved in the grade one classroom most of the day, while spending time in the special ed classroom when the others are doing more difficult work. The kids in his class really like him, and readily volunteer to be Mason's buddy in various situations in school.
Our current challenges are Mason’s levels of anxiety. My theory is that the part of the brain that controls emotion was not functioning before – Mason never showed great amounts of emotion. Now it’s been freed up, along with other areas, so all this new stuff is coming at him all at once. So with this overload of everything, he has become very emotional. He now cries if he sees Asia or Sydney cry. Severe separation anxiety with Mommy. Bedtime is very stressful for him. He has always gone to bed extremely well. Not any more!!! Someone has to be with him in his room until he falls asleep. Asia and Sydney often volunteer, but sometimes only Mommy will do. Although I have figured out that if I leave the house just before bedtime, he goes to bed much better for Daddy! When he goes away for respite, he goes to sleep without a peep.
The bottom line is that this is a very different boy we are getting to know. The most difficult part is that he is unable to communicate well with us. He has a few words, but the concept of communication is still not there most of the time. Crying is the main form of getting our attention. Some days he cries most of the time after school until he goes to bed. We haven’t figured out why yet. We are working with a behavior consultant and will be getting a communication system in place in the New Year.
We are so thankful that Mason’s quality of life has improved so much, no longer getting hurt, having to wear a helmet, having to have someone hover over him all the time. It has also changed the quality of our family life. i can pay more much needed attention to Sydney and Asia. They have been the most amazing daughters and sisters we could have asked for. their adoration for their brother is very obvious. Mason show obvious affection for them as well. Often prefering them over Mommy! That tends to put a proud look on the girls' faces many times.
Currently Asia is 11, in grade 6 at Middle School. She loves having her own locker, and is doing very well in school. She started taking guitar lessions nearly a year ago, and recorded her first song (that she wrote) today!
Sydney just turned 9 and is in grade 4. She and her little friends love to wear scarves as belts and playing with "littlest pet shop" toys. School is more difficult for her, so we were proud of the marks she got on her first report card.
Thank you for your continued thoughts and prayers. God is so good.
Merry Christmas!
Shirley
