Despite hardship, I love being the parent of a child with SMA
Kristen Resendez is a disability advocate from Harlingen, Texas. She reflects on what it’s been like to be the mother of 9-year-old Jack, who has SMA type 1, and what she’s learned along the way.
In recognition of Spinal Muscular Atrophy Awareness Month in August, the Faces of SMA campaign features a multimedia series with written essays and video interviews highlighting the real-life experiences of people affected by SMA in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #FacesofSMA, and check here for more.
Transcript
Being a mom to Jack has been very unique. I don’t have any other children so this is the only experience I know. Being a parent to Jack has been so special.
For him, I know it’s been very hard. I know that he probably has harder days than good days. He’s the one that has to live through the IV pokes and doctor’s visits and therapies. And I’m just there as support and as a spectator, you know, a lot of the times.
But I know still at the end of the day, he’s so happy. He has everything he could need and want in the world. He’s got a great group of friends at school. He’s got a great group of friends in the SMA community. I have a lot of friends in the SMA community who have provided a lot of great support for us over the years. And a lot of adults with SMA have given me lot of new perspectives to think about as Jack has been growing.
So I’m really excited to continue to watch Jack grow and being a parent to him, like I said, it’s the best seat in the house to see him come from where he started and where he’s flourished to today. And I wouldn’t have it any other way.
I love being a parent to Jack and being a part of the SMA community.
