And then the rug got pulled out from under me...

This past week has made me realize just how tenuous a hold I have on all these balls.

The Fall is our busy time: as previously posted, it is a time of multiple birthdays, wedding anniversaries, Halloween and Thanksgiving. This is also the first Fall I have been stretched to learn how to juggle two children under three, a preschool schedule, skating lessons across town, and the usual complement of family and friends.

We lead a good life. We lead a full life. But sometimes, something comes around when you're least expecting it, and punches you square in the gut.

I am winded and reeling.

Big-A had a stroke at birth. We went through two neo-natal wards and for the first three months of his life he was on anti-seizure medication, with visits to specialists once a week. We became fast friends with the Burnaby IDP and the Children's Hospital stroke unit, both of these organizations I take my hat off to. We were surrounded by a "team" of pediatric physiotherapists, speech and language pathologists, pediatricians, audiologists and others. All of which to say that Big-A did very well out of the process, made a lot of friends, and for all intents and purposes, looks and behaves perfectly normal today. When I tell others of his birth story, the usual reaction is to fall of the chair and exclaim "THAT child!? No way!!!".

The Burnaby Infant Development Program shepherds children until they are three years old. Between three and five, they are either picked up by the Centre For Abilities or left in a no-man's land of private funding and giant cracks. Once they reach school-age, the system can then recapture them and provide care workers, physiotherapists or others on an as-needed, funding available basis.

As part of turning three, Big-A was subjected to two major tests recently: the 36-month standardized test by the Burnaby IDP and a private, 1.5 hour assessment by our pediatric physiotherapist, Brenda.

The news we received not only pushed me off my unicycle, but snatched all the balls out of the air and kicked me in the gut.

According to the 36-month assessment, Big-A is hitting all of his 'target' marks and doing swimmingly. According to Brenda, he is still exhibiting a 20-25% tonal difference from his left to his right side, (stroke was on the left side of his brain, ergo his function is affected on the right side), and no longer a 2-3 degree head tilt but now a 5-7 degree head tilt. She has seen patients like him before, and in her expert opinion believes that we must work as hard and as fast as we can with him in order to re-route his neural pathways around his addled stroke-y ones and provide him with stronger, new ones before he gets too old. The brain is ever-developing at his age, you see, and the sooner you can re-establish new routes and habits, the better. Thus, he may not be exhibiting any issues with physical/mental/intellectual challenges now, but he may in the future, if we do not seize the opportunity as often and as intensely as possible right now.

(insert kick in the gut here)

I thought we were doing really well with Big-A. I thought we had vastly improved his physio to the point where his stroke was invisible, receding, even to the background, and just a hazy infant memory.

Nope.

It looks like we are going to be faced with this for life. This is not going to be something, (according to expert opinion), we are ever going to be rid of. We could be going along, thank you very much just fine and normal, when one day, when Big-A is called upon to do something new, he is not able to do it, and we are reminded that oh yeah, we almost lost you when you were born, and you and your mom almost died, and there is an ever-present, ever tangible reminder of that always.

And now, we need to craft a physio schedule of at least once a week, in between just being a kid, and having a little brother, and maybe taking in a friend for daycare, and possibly a couple of students to help with the bills, and right now, I need to just dive in under the covers and just hide. I need to take a minute to feel that kick, to feel all that blossoming black and blue bruising to my solar plexus, and I need to mourn just being normal.

And then I can get up, regroup, plan all sorts of awesome (yet fun) physio tasks for you and your friends and your little brother to do, and enroll you in all sorts of classes that will equalize your strength and find your balance, and do it in a kid-friendly way so you don't even know you are doing the work that is being asked of you, and we can try and just be normal again.

But for now, I need to just take a minute.