If I Knew Then What I Know Now

When I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to put a positive (but also realistic) spin on what I wish I could've told my younger self and the lessons that I learned during that time. Maybe someone in middle school is going through similar struggles or perhaps offer clarity when you have a bad day with SMA.

What I'd like to tell my younger self about SMA

1. You will find a home in your community.

I think that we all can agree - middle school is tough, and I'm actually in the midst of writing a book about this time and life with SMA, but I want to tell my younger self that you will find your community. I vividly remember going to my first conference during this time, and I hated it.

I respect my parents for trying, but, during that time, I fully needed to be in denial of my SMA for a bit and just think about normal things like my favorite shows just to be able to breathe for a bit.

Now that I have had my mom be my caregiver full-time for probably about a decade, I have been able to find my community in my own way. There was nothing like my first adult conference in 2019. I found people online and in person and I found such joy in it all and I constantly think about my gratitude for the community and the conference. The fact that we can all get together for a few days brings me such joy genuinely.

2. You will get through

For me personally, I had treatments for most of my life. I also hated it and always knew that it was wrong, but the doctors knew better. At one of my lowest points, someone had told me about a doctor who specializes in SMA, Dr. Bach. I've been seeing him I believe since 2017. And my life has changed so much for the better.

I never imagined that I would ever be free from hospital visits and treatments and just be able to thrive. Besides my terrible year last year due to GI issues, I haven't been in the hospital since being his patient. I've truly never felt freer and more myself.

Also adding onto that, I've finally felt like I've been able to finally breathe and relax this year. What I mean by that, is just be able to, in my writing mostly, heal and just relax more.

3. Learning how to handle anxiety

My SMA anxiety always led me to think about the next thing, the what ifs? This year because of last year, I feel way more present. As much as last year sucked, I learned a lot of lessons and it helped to be more present and heal. I can't explain how or why, but it did. And somehow, I hit my limit on toxicity this year - toxic habits, thinking and people.

I had a rebirth for sure after everything. Like I went to a college I thought was for me about a month ago just to visit and I realized why am I doing this? I able to do what I love now! In the past, I would never have found the strength to speak up about that. I have also reached my limit this year as far as my seasonal depression goes. I'm thankful that I finally found meds that work for me and I have the strength to work on myself so that I don't go down that path again. I'm so tired of feeling sad during the Winter and this is the first year that I'm excited about it. I don't know what I will do, but I have hobbies and things that I'm very excited about.

4. Independence

And finally, I felt like I never was able to be independent when I was younger. I would say if you find yourself getting caught up with your SMA consuming you - take back your power! On a vacation this past summer, a piece on my Bipap accidentally snapped. It was an emotional night, so my mom kindly treated me to a facial the next day to help with my consuming anxiety from the night before. If you can, definitely do something like that. Sometimes, although you can't physically take a break from your SMA, you can do small things like this as self care or a step away to help you feel less overwhelmed.

I hope this article helped you. It was really fun to write.