Over the past 10 years my favourite experiences have been focused around the SMA community. From playdates, conferences, bowling, fundraisers, summer camps, to one-on-one conversations. I have learned so much from other families and people with SMA, and have been so happy to share our story and advice to help others.
From accessibility renovation idea, equipment, to surgery prep and support. I love to help others avoid some of the mistakes we’ve made, and share the things that have worked for us and the hacks we’ve learned along the way (most of these are Myles DIY-related, he is the MacGyver of SMA dads).
Now that life is virtual, I have been so longing for that community and connection and I have really enjoyed my experience with the mySMAteam website. Over that past few months, it has added another way to stay connected to our SMA family while we can’t do anything in person. It is similar to other social media platforms but without the extra “stuff”. Everyone has been super welcoming (theres is literally a welcoming committee) and there are people with all types of SMA, from all over the US and Canada.
I’ve been able to use their “Q&A” section to ask questions about new equipment (Stella is finally getting a new commode chair that we’re super excited about), and been able to ask questions to older SMA women about their experiences with puberty and SMA. Puberty is daunting for any parent, so this has so helpful for Stella and I as we trust knowing the advice comes from similar first-hand experience! We were able to take this advice to our doctors to then get their input, and we now have a plan in place for the future.
One of the other great resources that mySMAteam has is their SMA-related articles. These are great, especially as they have some COVID specific articles, information that we’ve been hard-pressed to find elsewhere regarding what getting COVID would look like for Stella or us as she is at great risk, and vaccination information. It is such a relief to validate the worry we have about COVID as any respiratory illness are the worst for SMA patients (and those of you who’ve followed us for a long time, know how sick Stella been over the years with various viruses to even the common cold), and our fears of Myles and I getting sick as we would still have to manage her care as her primary caregivers (we have unfortunately lost most of our nursing and help at home because of COVID). My number one fear is not being able to take care of Stella due to COVID (or any other illness or injury). But the articles also eased my worries, as it reminded me that we are “expert quarantiners”. We have years of experience of avoiding colds and flus and we know how to keep ourselves safe(r). We’ve been buying masks, gloves, sanitizer and wipes before it was cool (and hard to find!). It was great to remember that we can do hard things and that we have the tools and experience to do so.
Considering we are almost a year into the pandemic this information was a great resource for navigating this especially hard time with such a serious underlying condition.
I can’t wait for more people to join to add more stories, more experiences, and more support for each other!
You can join the free mySMAteam community here.
*This post is sponsored by mySMAteam