Musings of a Marfan Mom

March 31, 2011
by marfmom
5 Comments

A Break

The last month of sickness, missed therapy appointments, cold, and rain has really gotten to me. I’ve been stressed, not sleeping well, and my writing has stunk. In some ways that’s the worst part. Usually, no matter how stressful a day is, I can at least spend a few hours writing after the kids go to bed. With this funk I haven’t even been able to think of things to write about, let alone put together something I’m proud to post.

So one night last week I looked at Mark and told him I needed to get out of town. I needed a break from the routine because I only know what day it is based on which therapists are showing up at our house. When life revolves around M’s appointments and nothing else, it’s time for a break: a break from autism.

Saturday morning, we’re leaving town and taking the boys to the beach. I. Am. So. Excited! I know we can’t totally take a vacation from autism, any more than we can take a break from Marfan syndrome, but this is going to be a carefree weekend.

What we’re NOT going to do:
1) Turn everything into a therapy activity
2) Record behaviors
3) Spend the day analyzing sensory causes and effects
4) Bring the computer

What we ARE going to do:
1) Go to a farm that offers pony rides, train rides, and a huge digging pit
2) Eat yummy food
3) Walk on the beach
4) Take lots of pictures
5) Laugh
6) Sing
7) Stay overnight in a hotel
8 ) Sleeeeep

I’m sure I’ll have some great pictures to share with you next week.

What are you doing this weekend? Anyone else taking a break from life?

Your daily dose of cute: he's got awesome fashion sense, eh?

March 30, 2011
by marfmom
2 Comments

Baby Sings Bieber

I want to start off by saying I don’t know where the Menininho picked this song up. A long time ago, at least 6 months ago, he went through a brief Bieber phase after he saw the mop-haired wonder singing on the Today show. No Bieber again till a few nights ago when I parodied his song singing to Baby J. Then, last night M’s playing in a corner and Mark comes to get me. M is singing to himself! He’s never sung before!

Apologies for the crappy picture quality but M was standing between the camera and me, so, lest he catch on and refuse to sing for me, I had to use my phone to capture the video.

March 28, 2011
by marfmom
3 Comments

RIP Purple Car

In the receiving line at our wedding reception, one of Mark’s labmates informed us that his chip was complete, meaning he just needed to finish his thesis to graduate with his MSE. We’d been afraid there would be a problem that would delay the completion and Mark and I would need to live apart for a short time. I was so overjoyed at the news that I flung my arms around the guy and jumped up and down.

However, upon returning from our honeymoon we’d learned the labmate had been mistaken. And what we’d thought would turn out to be a month or two of separation turned into 6. I needed a (“new-to-us”) car.

Enter The Purple Car.

Original name, I know. I called the shade “iced plum,” Mark thought it was brown, and the two together made purple. It made a lot of trips from Columbus to Cleveland the first part of our marriage. When I was pregnant with M and Mark moved to California, The Purple Car stayed in Ohio with me. We drove M home from the hospital in that car, and Mark’s company paid to ship it cross-country when the baby and I joined Mark. For the past 2 years it’s been the car he’s taken to work.

But over the past 18 months the car has had more and more trouble and we knew the end was near. When it failed the smog check last month, it was official: time to retire The Purple Car.

On Saturday we took it to its final resting place at the junkyard. With all the recent rain the parking lot was entirely flooded, so I stayed in my car with the boys while Mark processed the paperwork and turned his vehicle.

Farewell, old friend!