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If today were a golf game I would ask for a mulligan. Not that I know golf, or anything else much today. It is summer and I love the hot weather. I can’t get enough of it in fact. It is my favourite time of year. We had a fantastic weekend followed by one child’s birthday and a day to sleep in. Perfect, right?
Not so today and yesterday. I have done two full summers now with scheduling my kids solidly almost every minute out of necessity. Their special needs, plus caring for my Mom and needing to be available to her meant that I needed to slot the kids into more day camps than I wanted to actually. But this year will be different, I thought. We’ve had a really big loss and we are all healing. We need the time together to rebuild. I am ever conscious that time is not faithful to anyone and my kids grow fast despite my work, despite my grief. I get maybe six more summers with one before she heads off to University. So I wring the daylights out of each summer day. I plan for them to travel with me leisurely through day trips and blog trips. We’ve already hit two great blog trips and have another quickie one next week.
The plight of a work at home Mom doesn’t mesh well with special needs parenting and summers that are envisioned as hopeful fly-by-the-seat-of-your-pants-days, relish every moment and take photos running through the sprinkler days. Summer, plus work at home, plus special needs is a work in progress.
I love my family and wouldn’t trade a single member for all the stars in the heavens. But this is life with special needs. Every so often you forget and think this will be the summer things are the way I have painted them in daydreams.
Very early on with my Ainsley girl I gave up this tiny thing – a dream I had of our Schuck foursome walking through Chapters/ Indigo taking a stroll – each of us picking a book calmly. Norman Rockwell- esque. My reading family. These are the moments I dreamt of when we were seeking to adopt. These are the ones we got: Ainsley getting lost at Disney. Ainsley wandering away from school. Ainsley running into the path of cars as we bolted after her, praying the driver saw her. Ainsley yanking all the books off the shelves at Chapters, racing through the store and getting lost. Ainsley struggling to process written words. Ainsley hitting us. Ainsley screaming all the time.
Today is a day I don’t even have the energy to give FASD (fetal alcohol spectrum disorder) the one finger salute. But I’d like to. The awesome long weekend meant today Ainsley was angry and frustrated when she realized her sense of time is all messed up. Today is Tuesday she argued. I gave up, even though it’s Wednesday. Today she got time and place and distance and day all confused. I get it. I do. But I don’t have to be happy about it, when it means the FASD
is mixing her little head all up so she is spitting at us and scratching me and kicking her sister in the stomach.
I’d like to say that today I didn’t scream. I didn’t freak out thinking it’s been 4 1/2 years this kid has been wait-listed for a non existent service the Ontario government calls Special Services at Home. (That’s half of her life.) I’d like to say I didn’t think about walking down the street and disappearing. Or pulling a stunt at the constituency office of Deb Matthews. Today I hate the neighbours because they don’t have kids with special needs and they never offer to help and they look at us weird when she is having a meltdown. Today I resent all the older people on my street because they are not my Mom. Today I cried half a dozen times because it’s two months since my Mom
passed away. There was nothing good or redeeming about today. But then the kids went to martial arts and I found this tomato and it was perfect. My tomatoes never turn red, but this one did.
Special needs parenting is the process of constantly giving up dreams, sometimes finding new ones, and grieving repeatedly. Normal doesn’t live here. But sometimes you find one good thing.
If you are a special needs parent, do you have days like this? If you were me what would you do with this tomato?