Four Years

This day, four years ago, we were two days post Riley's brain surgery. This day, four years ago, we were neck high in the crappiest muck we couldn't shake off. Thrown into a dim world between, "Oh, Lord, what have we done?" and "Dear Lord, may this work." I actually don't like to think about it, those darker times, but most everything if looked at in the right light can have a positive spin. It has been four years since Riley has had a seizure. Four years since we've seen the monster that would creep up on us as we slept, interrupt our conversations, and invade our laughter....more

Long Time No Write...

Well, hello... I haven't done this in over 3 years. I abandoned the thought of writing my inner, deep, personal thoughts down and entering them into cyberspace for some time now but I'm choosing to entertain it once more. I'll call it free therapy for myself. My special needs son, Riley, became even more "special" last summer and was diagnosed with Type 1 Diabetes. I cried the day he was diagnosed and then proceeded to throw a pity party for myself every time I heard the song, "Worn" by Tenth Avenue North....more
"I cried the day he was diagnosed and then proceeded to throw a pity party for myself..." -I ...more

I need to relax a bit

Well, I got to thinking today that having a special needs child really dominates my whole thought process. If Riley has a headache, there is a tiny part of my brain, that I often try to ignore, that likes to think Riley has intracranial pressure and will soon end up with hydrocephalus. It’s possible with tuberous sclerosis. But can’t Riley have a headache just because he has a simple headache? I had a headache yesterday and I don’t have tuberous sclerosis....more


So, it's now 3 months post surgery and we are going NUTS! Doctors forgot to mention a "little" thing called "behavioral changes" post surgery!! Okay, so not complete behavioral changes but anything that Riley had going on in his head pre-surgery has been put on a stage, groomed, and the spot light is on -so to speak. For example, Riley's ADD is off the charts. Riley's obsessions have worsened to such a degree that, you see that adorable smiley face at the end of this page?, that smiley face is plastered on just about every wall in my house. They are held prisoner on my fridge....more

Maybe Tomorrow

Today was not the day I planned.  Not the great day, relaxed day, family day, Sunday.  Sunday....that is supposed to be a day of rest, right? Today was not the day I hoped for.  The calm day, fly a kite day, bake cookies and enjoy day. Today was not the day I wanted.  It was my everyday typical day and that sure does really piss me off. Today was not the day I prayed for.  Not the happy day, joyous day,...more

Sometimes it gets lonely on the playground

I have experienced normalcy to its capacity having already seen my two daughters through their most formative years. Now teens and almost grown I reflect, perhaps too much, on my son's current elementary years. When Riley was born he was instantly initiated into his sisters' realm of friends, playgroups, and activities.  He never even had to worry about having friends.  As the girls got older and the barbies were banished to the attic - the tea parties, make-believe forts, and all those playdate friends began to vanish....more


So, Riley just completed his speech/language session in a most awesome fashion and I've decided to "treat" him to a cookie and a drink from a local coffee shop. After I paid and collected our goodies I recognize Riley's "sneeze face." His mouth is wide open with eyes to match and his arm is high up in the air as if to say "I'll shield thee"....more