It is hard to forget that Serena and Edwin were born 17 weeks too early. With the nasal cannulas, oxygen tanks, pulse oximeters, poseys that I find EVERYWHERE, Serena's "special" voice, scars covering their little bodies, Serena's aspirating, Edwin's vomiting (reflux, sensitive gag reflex, and probably low tone in his mouth and throat), Edwin's low tone and inability to sit unassisted for more than a few seconds, and their small size...etc...how could you forget?
In spite of this, we have been experiencing some normalcy lately in the form of going out and about with the kids and really having a great time.
Last night we went to Boston (hour drive) to see the teens that I work with and Edwin helps train and mentor box for the qualifiers for the Junior Olympics (they don't go to the Olympics it's just the championship title.) We took S&E along. This was their first indoor boxing event and a test for how they'll do when we take them to Daddy's next local fight where he will have them carried in with him and then bring them into the ring...too cute!
Anyway, we stopped at Wendy's and the kids had chicken nuggets and french fries and EJ had a vanilla frosty (S doesn't really like sweets...whose kid is she? lol). It was so fun to have them experience American's great indulgence...fast food! They loved it...of course. And off we went to Southy for some quality boxing. Edwin is now off O2 7 hours a day and so we got to enjoy a tube free baby all show long (2 1/2 hours.) Edwin and I held each one on our laps and they did GREAT! No meltdowns, a couple whines from Edwin when he wanted to stand on the floor and cruise the chairs and a couple of "DA DA DA DAs" when Daddy left to help prepare one of our local kids for his bout. Even alone with both kids I was fine. They sat pretty still (S more than E)and it was so fun. S managed to have a smelly poop in the middle of the show(GI bug still not entirely gone!) but no worries, I changed her on a couch in an adjacent room. We were there until a little after 9:30 and Daddy wondered if he would be painted like Britney Spears by the boxing paparazzi. lol. It was fun and now Daddy gave us the green light to bring them out to events like this again.
They did both go back on their O2 in the car, and once their monitors turned on by themselves in the bag at the fights, but in terms of equipment, it was pretty cool to be free of it if only for a little while. Edwin Jr did manage to throw up in his car seat mid-sleep on the drive home, but since we have an 8 seater Toyota Sienna, Daddy sits in the middle row next to them and was able to catch it all in a blanket. He has thrown up every night since this stomach bug started over a week ago. But he did sleep through the night in his bed just fine once we got home.
Anyway, it was a taste of normalcy and I was so happy they did well even with all the loud noise and tons of people. Other than their dislike of grass, they do very well with sensory related things, which I am very thankful for. It is so nice to go places with S&E and know they will be comfortable and have fun.
And as for the many who asked whether S&E will box? HELL NO!!!! Even without their many near death experiences, lung issues (asthma?), tone issues, etc. there is no way I would let them box. I got a little teary eyed at one kid that was tearing up when he got hit really hard in the face and then when he lost. And I almost cried when I saw another kid from our gym had a bloody nose. I enjoy going out and supporting the kids we work with do what they love...I just hope S&E realize they can love golf or piano and leave boxing to their Dad.
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5 comments:
awesome! Let the fun toddler experiences begin!!! Do you want to meet at Davis Farmland one day before it gets too hot?
I am so glad it turned out so great. It feels great being 'normal' doesn't it?
If Michael is doing better, we'll be going to Boston in May. I just can't wait for the moment that we don't have to be so careful anymore. I asked the PICU doctor when would be a good time to take him out of the 'bubble' and he said, the sooner the better...
It sounds like the event was great and that the kids did really well at it. I love these 'tastes of normalcy.' We haven't dealt with equipment and tubes for a LONG time now, but being moms to one of the world's greatest public vomiters doesn't help our cause. But the other day, after the MOD march for babies, we did manage to get through a whole meal unscathed and it was lovely. We still can't and don't foresee having a kid who eats anything that is solid for a LONG time and that's hard because anyone who doesn't know us (like waitresses) want to bring Hallie stuff and all of it's forbidden for one reason or another now (texture, allergens) but it's nice to pretend once in a while that there's nothing that makes our kid different than others.
I guess the thing that gives me pause and is discomforting is that our kids -- at least right now while they are young -- CAN pretend to not be any different: in other words, our kids can "pass" (to borrow a descriptor of this phenomenon from the world of the history of race and sexuality). It's an effort sometimes, but no one knows what these kids' history was or what makes them different now. But that's not true for so many of our micropreemies---no amount of parent effort or coordination or hard work can make them less dependent on technology or give them and their parents a taste of normalcy, as you put it.
Abby, I completely agree. It's funny...I took many history/political philosophy/africana studies classes in college and "passing" was always something that fascinated me.
I have actually thought of this exact word when thinking about S&E. So often we are in public without the O2 and no one knows S&E have the issues they do. When Serena makes a noise they think she is growling and think it's funny. I panic when someone wants to hold Edwin because I'm worried they will try to sit him, or they won't give him enough support and he'll fall or something.
It is disheartening to think about the many that can't "pass" and it is possible that we may get to a point where we can't either...if Edwin needs aids to walk, or in school, with their language, etc. I therefore think it's important to educate the public on disabilities and health-related issues in children. And I think acceptance and equality is vital...and I think we as a society have a long way to go. My hope is that exposing the world to S&E and exposing S&E to the world will make even a tiny impact.
Stephanie,
You have such a beautiful family!
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