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Getting Out With Gwendolyn…At Some Point, We Just Started Living

February 16, 2011 by Bill Strong

I wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook "25 Things!" going around and, well, these were my 25 things. None of this has much to do with us getting out with Gwendolyn, but I vividly remember a comment to that post from an SMA mom with a child much older than Gwendolyn. She said simply -- "I can't even recall exactly when, but at some point we just started living." Her comment has always stuck with me. At that point in our journey with Gwendolyn, I couldn't bring myself to fathom how that could be possible given the challenges of SMA. But now it makes perfect sense. She was absolutely right. And at some point, we, too, just started living.

One of the more common questions we get from other SMA parents, especially newly diagnosed, is how we get out and about with Gwendolyn so regularly. To be fair we have weather and community on our side -- we can literally walk 5 minutes out our front door almost 365 days per year to several parks, the beach, restaurants, etc. And purchasing a minivan and recently a conversion minivan has allowed us to travel more -- especially since we transport Gwendolyn in her stroller with all of the equipment already secured on the stroller making things logistically much, MUCH easier. We also learned that Gwendolyn did better if she wore her bipap on walks (even though she didn't always "need" it early on) -- it helped her push her secretions out, relaxed her, and, therefore, meant less frequent and severe choking episodes, etc. which relaxed us. And then once we got to the destination, if she tolerated it, we had the option to take her off bipap. Despite logistics, probably the most important thing to realize is that we haven't always been so mobile or comfortable taking Gwendolyn out. That took time. And it took going out to become more comfortable. We're always extremely careful and mindful in weighing the risk and benefit every time we leave the house -- even now -- but it has been worth it!

Gwendolyn has always been a social child and she's always made it crystal clear what she wants out of life -- HER life. Sometimes those things are at odds with what we, as her protective parents, want -- but it is her life. We've come to learn that while there are many things that we can't control with Gwendolyn's SMA, there are many, many things that we can. And finding waysto give her life experiences is one of those. So we've pushed ourselves over the last three years to accept aspects of Gwendolyn's SMA, face and get over our constant fears, be creative, ask favors, and find ways to give our bright little girl as many of those life experiences as possible.

Now, this didn't happen over night. Not even close. It happened slowly and to this day we have peaks and valleys with our confidence. When Gwendolyn is strong, we are more adventurous. When Gwendolyn has setbacks or normal SMA challenges, we retreat. That's only natural given the reality of SMA. We also have a rule that we don't do anything that doesn't feel right to Victoria *and* me or is likely to create unnecessary stress. And if we try a situation and it just doesn't feel right, to either of us, we leave immediately. But, and this is a big BUT, if an outing doesn't go as planned, we try not to let that stop us from getting back up and trying it again in the future.

We started getting more mobile around Gwendolyn's 11 month birthday when we got her JAZZ EASyS stroller. We started local, walking to our nearest park with a duck pond when no one else was there. Then we ventured to a coffee shop. And eventually we worked up to a restaurant -- at off times. And we continued to move out from there -- and each time Gwendolyn's bright smile and eagerness to go and do and see pushed us to keep at it. We've learned to ask for favors (something we aren't naturally comfortable with), but sometimes that favor makes all the difference and means Gwendolyn gets to have an experience we thought was not possible. And we've learned that almost every time we explain the special situation to a zoo or theater show or hotel...every one of them has been more than happy to help give Gwendolyn (and us) these opportunities.

With germs (and protecting Gwendolyn from them), that's something that has definitely taken time to not feel constantly stressed about. But we plan ahead, go on off times, and are extremely diligent about creating a discreet safety zone around Gwendolyn. Constant hand washing and sanitizing is the norm -- of course. If Gwendolyn is going to touch anything it's wiped down before if possible and her hands are definitely wiped down afterward. We've even found ways to be semi-discreet about doing that so Gwendolyn's fun isn't interrupted. We've also come to learn that Victoria and I are really the weak links and biggest risk to exposing Gwendolyn to germs as we are the only ones that touch her face/nose/mouth and suction her. We are constantly washing hands, wiping hands, and sanitizing before touching or suctioning Gwendolyn or even Gwendolyn's things.

We know it's not easy. We know it's scary. We know it's daunting. But we've had so many experiences with Gwendolyn that we never thought we'd get the chance to do -- things that have truly enriched her life and ours. And we don't regret any of it for a second! Pushing ourselves was the first hurdle. And that has only benefited Gwendolyn's quality of life -- and ours as we continue to figure out how to live life with SMA.

Here are some of my favorite experiences we've had over the years (click to read more):

Talk About It

I know this post is going to help so many other parents struggling with finding that balance of protection and giving their children wonderful experiences...and knowing that it didn't just come, that it has taken time and that you are still pushing yourselves to do these things-I know that will resonate with so many other loving parents! You amaze me with all you and Victoria do to enrich G's life and it is easy to see that she loves every second she spends with both of you, getting out and just living!! Thanks again for sharing your little girl, your world, with 'us'. Love and hugs, Em
Posted by Emma on 2011-02-16 09:02:51
[...] ourselves and held our fears close in so she couldn’t see us tremble as we tried new things, as we ventured beyond what at one point felt impossible. And then we started making plans and we began looking toward the future — toward [...]
Posted by This Moment. � Gwendolyn Strong | Gwendolyn Strong on 2011-09-02 09:38:35
Thank you for this post and for the 25 Honest Things. Many of those same 25 things haunt my mind; but like you, I try not to let those things stop us from living as full a life as possible. We are nearing the end of Getty's first RSV season, and she's doing well (knock on wood). We are inspired by your ability to get out and about. We would like to be so active, and we are trying to get everything in place so we can go out with as much ease as possible (physical and mental ease). I would love to talk to you about your experiences with safety and mobility. We think we are getting a van soon and we have been talking about perhaps a SoCal road trip so Getty can meet Gwendolyn, visit her extended family in SoCal, and perhaps Getty can check out my old stomping grounds in Camarillo. Thank you for your openness and your fight. Know that you truly are an inspiration to us and that, in turn, we hope to inspire others whether or not they are affected by SMA. -Mark Storm
Posted by gettyowl on 2011-02-16 09:45:33
A balance is so hard to find and isn't it refreshing to read this post after your honesty post . . . because we all go through those stages of finding the balance . . . I don't really think about Stella's funeral anymore (whereas I used to all the time, wanting to make sure I covered EVERY thing wonderful about my child that I wanted to share with those who didn't know her and etc.). Keep up the good work! Hugs and love!
Posted by Sarah Turnbull on 2011-02-16 20:21:13
[...] just wrote a post called �Getting Out With Gwendolyn�At Some Point, We Just Started Living� (http://www.gwendolynstrong.com/2011/02/getting-out-with-gwendolyn-at-some-point-we-just-started-livi...). If you don�t know who Bill Strong is, you should. He�s the dad of an amazing little girl [...]
Posted by Getting Over the Fear | Andy's Army on 2011-02-17 19:48:14
The photo is phenomenal.
Posted by Stefanie on 2011-02-18 12:36:12
Gwendolyn is so blessed to have you & Victoria as parents, and you two are equally blessed to have her. What a beautiful post & stunning photo! You guys do incredible work & I am so proud to be able to call you my friends. Kiss G for me!
Posted by Laurie on 2011-02-18 13:20:39

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