Erik Quinn: The Heart of a Family: Another Day In Paradise

Wednesday, August 02, 2006

Another Day In Paradise

Well, there's no place that I'd rather be
Well, it's two hearts and one dream
I wouldn't trade it for anything
And I ask the Lord every night
For just another day in paradise

"Just Another Day in Paradise" -- Phil Vassar

I am fighting fatigue because this evening is so relaxing that I don't want it to end. Brian is battling killer zombies on the other side of the office on his computer, and I am making the rounds to my friends' blogs in our cozy techno neighborhood. I feel like I have had a cup of coffee with each one of them. Now that I am caught up on my friends and their adventures, it's time to reflect on what has happened in the last couple of days to our family.

I'm still in survival mode as far as work and Erik's therapy goes this week, as Boppa and Grandma are still away on their bike trip. Therapy was canceled this afternoon, which turned out to be a positive thing because Erik didn't go down for his nap until about 1 p.m. (therapy is at 1:15 p.m.). Tomorrow he goes to his little group session. He has been getting up between 6 and 7 a.m., which doesn't leave me much time in the morning to organize my day, but he has been very patient with my running around the house like a headless chicken as I make phone calls, print out ophthalmology letters, e-mail medical reports, and transcribe during his naps here and there. Brian has been coming home as early as he can so I can finish any work that needs to be done. For the past two days, Erik has successfully walked across the parking lot into the medical center, to both of the offices I transcribe for, and back out across the parking lot to the Jeep while holding my hand. My baby-schlepping arm is very happy to be in semi-retirement. Yesterday we encountered a giant Pepsi truck in the parking lot making a delivery, and we were mysteriously but definitely obligated to stand motionless for several minutes to listen to the chunky rumble of the engine. Today someone pulled up to the front of the clinic in a sedan, and Erik insisted we stop and stare at this poor woman in her shiny, blue car for a very socially unacceptable, prolonged period of time from an uncomfortably short distance away. Looking back on that moment, I am giggling. There is a new song on the radio now we hear every time we are in the car together. I am unable to name the tune or who sings it yet, but the chorus contains the words "Ah noooooo...ah nooooooo." Erik is beginning to sing along every time they play it! I imagine it's officially time to turn off the rap and death metal (hey, I love just about every type of music) and maybe program the easy listening station onto the first button on my car stereo. In other Erik-related news, I bought fresh strawberries and blueberries this week, and Erik ate them without much trouble. They are a little sour for him, but he seemed to like them despite the river of saliva they seemed to create. He is still not a huge fan of my cooking, and we still open at least a jar of baby food for dinner most of the time, but we are getting there. He hates the prepackaged toddler food with a purple passion. We are still stuck on Gerber 3s. He eats a lot of the Gerber lasagna and spaghetti, but he is eating a variety of other regular fruits and veggies in addition to his assortment of cereal, crackers, cottage cheese, PB&J sandwiches, and yogurt, so I'm not too worried about his diet. He is also saying "hi" now. I am almost certain he said "bye-bye" to my friend Kelly today, but the jury is still out on that one. I am still slightly skeptical, but after the spurt of development that has occurred in the last two weeks, I am not surprised by much. This week I also retired the infant bathtub we have been washing Erik in for almost two years. His legs were beginning to stick out the end of the thing. I retired the infant car seat for the same reason. I snapped a photo of his first big boy bath and will attempt to attach it to this post. He has also learned to open doors. Look out, world (look out, Gracie!).

As for the DVDs from WSA I ordered, they have not yet arrived. I ordered additional items on their website to give for Christmas gifts which sold out at the national convention, so there has been a delay in my order. The anticipation is killing me, and I think I'll feel better just having them here in shrink wrap for a while. I know watching them will be a very gut-wrenchingly emotional experience for both me and Brian, and I'm not even sure I can get through them in one sitting or even in one day, but I'm ready to try. I made it through the book over a period of weeks, but that was very early on, and I read it only because it was necessary to determine what this rare diagnosis would mean to our family. The information I got from the book was less than uplifting, as it was actually worse than I expected, but now that I have two feet in reality and am familiar with what we are dealing with, I am hoping it won't be such a shock to "meet" some older kids and adults on the videos. Truthfully, I am expecting a little shock, anyway, but I will watch them with an open heart and mind holding tightly onto Brian's hand.

That's the news from the Big House for now. Wish us luck at group tomorrow.


Blogger Lisa R said...

I hope today goes well :) I got the soundtrack to "Cars" over the weekend it is pretty good Emma loves it I bet Erik would to. I can copy and mail it to you if you want :)

6:44 AM  
Anonymous Steve J said...

I think the song that Erik is singing is called Black Horse & The Cherry Tree by KT Tunstall. Great song, but it is getting obscenely overplayed.

Great post, as always!

2:24 PM  
Anonymous Kim Monahan said...

Hi, it's me..Ava's grandma. I so look forward to your posts. Your descriptions of everyday experiences just crack me up!

Have you ever watched "The Doodlebops" on Disney? Ava loves them! Of course, she loves anything or anyone who sings and dances! She even rocks out to the ring tones on my Nextel. When she stayed with me last weekend I literally sang the ingredients list on the back of the baby wipes. She loved it. glycol. Isn't WS a mixed blessing???

Erik is adorable in the tub. Is he splashing and enjoying himself? I ask because Ava just sits there quietly and lets me wash her. 'Course she is only 7 months old, but this incredibly-young grandma wants to play!

Keep those great posts coming. It really helps me, and probably many others, put things in perspective.

Take care, Nancy!

Kim M

3:45 PM  
Blogger Kerry said...

Wow.. what a big boy now!! Can you believe it's been two years?!?!? I think that it will be hard in some ways to watch the tapes... and I will be interested to see your opinion.

Erik is probably having a blast being Mommy's Little Helper!

5:42 PM  
Blogger Jennifer said...

You brought tears to my eyes as I read your blog. I am a new reader and I appreciate your honesty in your posts. I knew exactly what you were talking about regarding watching the DVDs and reading the book. I have three children, two of which have medical issues. Keep strong.

8:19 AM  

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