Episodes

When she started having seizures, she was 10 weeks old. It was the final ‘marker’ to her diagnosis. She’s had so many since. I can’t even count. However, I remember that first one as if it was yesterday (and it was 10 years ago). It was like my heart was ripped out. Honestly, it was like a death. It was the same feeling that I had when my dad passed away. It also meant that there was no denying her diagnosis and our confirmation that we were in Holland.

We have become more benign to them. At least, we are so with the small ones. Those last a few minutes and average from one to three a day. They are more tolerable for her and anyone that’s around to see them. Some folks do not even notice. We sometimes use the analogy of hiccups. i.e., sort of annoying and you just need to wait for them to go away.

Then there are the strong ones… the ones that trigger a call from school or a run up the stairs to her bedroom and sometimes a run to the medicine cabinet (for extra medicine to stop them). Those are unfair and unbearable to watch.

Last night was one of those… After we put the kids to bed, I sat on the couch to catch up on an episode of "Lost." I heard a slight tapping or maybe it was mother’s instinct (?) As I approached her room, I could hear the heaviness of her breathing. She was in a sweat and her left fist was clenched. She would stiffen every few seconds. I couldn’t catch her eyes. She was off in a distance – not focused on anything. I called for my husband… We were unable to get her attention. Finally, she gave Daddy a big smile as the seizure continued. Then, after more minutes, it stopped... Thankfully, no “extra” medicine was needed... not this time. Eventually, she would fade off to sleep. She slept somewhat peacefully. That is more than I can say for us (her parents)... I thought: will I hear her through the monitor at the side of my bed? Will I sleep through an episode that would have needed medical intervention?

So, I guess that I need to apologize… ‘Cause Our North Star Dog isn’t just for ****… The dog is for her parents and siblings as well… Sorry and thanks! Thank you from the bottom of our hearts!

Footnote: Episode = A show that is distinctive and separate although partof a larger series; Also, a term that the neurologist uses to describe a seizure event/occurrence.

Treasures

Okay, so every night, I have this routine with my son. We have three stories that we have made up over the years. I surprise him with one of the stories each night. Last night, it was the pirate story: He is on a ship with all his pirate friends, their parents, his family and everyone's pets. They are in search of a pirate treasure. When they get to the island, they find the spot on the map. They dig until they find a treasure chest. Inside, there are lots of special delights: (in no particular order) wii games, ds games, chocolate covered pretzels, spaghetti (w/butter), soccer ball, lentils (for his sister – one of her favs), and much more. They also find a smaller treasure chest. Inside are dog bones, meow mix and yarn. That’s for their pets.
He then says... “Oh wait, Mommy… “There’s another treasure chest!” “It’s bigger than the small one and smaller then the big one!” He says “They open the chest and inside is ****’s Dog!” “That would be a great treasure, Mommy, right?!”

“Yes, it would!” I say.

BooBoos

So, my 5 year old decides to start a conversation: “How did she (her sister) get a booboo on her brain?” Well, I say that she was just born with it. She says, “I feel sorry for her.”
So, I suck it up and proceed to explain how happy she is... That she loves her brother and sister... that they make her so happy... and that we are getting a special dog for her...

Thanks for the diversion!! It worked!

Our "Trip"

When my daughter was diagnosed, almost 11 years ago (wow), a well meaning friend sent me “Welcome to Holland” poem from Chicken Soup for the Mother’s Soul. I am sure that all special needs parents have read it at some time in their child’s life. For those that aren’t familiar with it, it metaphorically compares being a special needs parent to planning a trip to fabulous Italy and ending up in Holland. It explains that, for the unexpected trip to Holland, you need to “buy new guidebooks”, “learn a new language” and “you will meet a whole new group of people you would have never met”. So, my time in “Holland” isn’t so bad. It has brought such a different perspective on life. I have a genuine appreciation of everything... even the simple things. (A day without seizures really ranks!) We are so lucky... Grant it, it’s not always easy…. I’m still looking for the perfect guidebook. But, hey it’s a trip and this “whole new group of people” I now call friends!!

So, now we are on a planned trip… The North Star Express!! I can’t explain to you the feeling that I have right now… It’s like looking forward to a Disney vacation… Disney is a lot of work especially with three kids but it is so much fun… I now have my own metaphor… and, more importantly, I have the feeling that I can’t go wrong with a Disney trip or our North Star dog!

It's Official?

Okay, so now I'm a blogger? It's still a little wierd for me. However, it has been great to connect with others. I have met some wonderful new 'friends' via this forum. More importantly, by sharing our experience, I hope that you may see the joy from North Star.

Hope you're having a great day!

What's In a Name?

We're looking for name suggestions for our pup... Maybe something that can be abbreviated and easy for our daughter to 'say'.. So far, at the top of the list is "Amigo" or "Amiga" i.e. "Moe" or "MeMe" for short. This name would represent all those whose love and generosity made a North Star Dog possible for us.

We don't know the sex of the pup that we'll get.. Suggestions are welcome..