We had a big weekend! For the first time since Gwendolyn's SMA diagnosis, it was just us girls. It was Nick's bachelor party (Bill's best friend) and Bill really wanted to be there. So over the last few months we have been talking about Bill going away and I have encouraged him that I would be okay. Although in the past Bill and his friends always traveled to cities they'd never been to, this time Nick kindly located it in San Diego — close enough for an emergency rush home. And thankfully there were NONE! In fact, we had a weekend of many firsts and we did really well — although we missed Daddy, of course!
The biggest first was on Friday — I drove Gwendolyn in the car by myself. Yes, in over a year we have never driven Gwendolyn without two people because of her propensity to severe choking. I think this is partly why I was a bit bummed out earlier this week. I knew my friends were getting together and when I remembered Bill was going on his trip, I immediately thought, “I can't go,” and well that really stinks. We are fortunate to live in an area that allows us to walk to many places (doctor, music class, parks, coffee shops) and Bill and I do our best to make it all work. He works from home and adjusts his schedule around times when we need to go somewhere in the car. But, in all honesty, we decline many things because of this issue and it stinks to have our life impacted in this way. I mean, how many of you have even had a second thought about driving your child on your own? It is a pretty basic thing — a necessity in many cities. The other issue is the weight of Gwendolyn's equipment and getting it all in the car by myself. Although I'm pretty strong, I simply can not lift Gwendolyn with everything loaded on her stroller up high enough.
Well, I quietly decided that this was something I needed to do. I didn't tell Bill. (I'm like that with things I'm nervous about — talking about them makes me even more nervous.) I thought about how to get everything in the car ahead of time. (Because Gwendolyn needs to be flat or relatively so, there is no car seat that works for SMA toddlers, so we actually put her entire stroller into our minivan and use straps to connect it to the bolts in the floor.) To ease the weight, I put her stroller in the car without her in it, brought her machines in separately instead of loaded on her stroller and then carried her out to the car. I turned the stroller around so I could see her in the rear view mirror — we usually have it the other direction and I sit in the back with her. I had to elevate her slightly so I could see her face, which makes her at a higher risk of choking, but I had to be able to see her eyes. This was risky, but I knew I needed to try. Gwendolyn has been doing so well and her choking issues are so much better than they were a year ago that is seemed the right time to try — and I knew the route had lots of places to pull over to suction if needed. I felt really good that I was able to get Gwendolyn and all of her machines in the car by myself. Truthfully, I was a nervous wreck and asked her about every 2 minutes if she was okay, but Gwendolyn did great. She was glad to get out and sang most of the drive. And with my friend Sarah's help, we were able to unload Gwendolyn once we arrived while she was still in her stroller and then reload her for our drive home. I was a bit nervous for our drive home because Gwendolyn was tired after a fun play date and when she is tired she tends to choke more. But, she resumed her singing and thankfully all went just fine. I was even able to get her out of the car while still in her stroller all by myself. I was really proud of myself and couldn't wait to tell Bill (he was thrilled and so proud of me — he knows how much of a huge step this was).
The rest of the weekend I tried to pace the day so I didn't get too tired. We spent lots of time walking outside looking for birds and butterflies, got some shopping done, and did a fun thing for Daddy (shh!). I knew I would be okay if there were no emergency issues and I thought I'd be okay even if there were. But, both Bill and I were nervous, hoping nothing unusual happened — for all of us.
Gwendolyn was great with me, but her face lite up when Daddy got home today. She kept waving and wanted his undivided attention. And she was so excited to see Mommy and Daddy together. This was a big weekend in the Strong household — a successful pushing of our comfort zone.
PS
This does not mean I'm going to start driving all around everywhere by myself. It is still a risk because of positioning and her silent choking. But, if Gwendolyn is having a good day, then perhaps I will finally join friends at the SB Zoo.