SMA News Forums Forums Our Community Parents​ ​and​ ​Caregivers​ Caring For Someone With SMA is a Full-Time Job

  • krystal

    July 10, 2019 at 8:40 am

    I agree with this post. It’s hard. SMA sucks, despite the great treatments out there. No matter what, my child still has SMA, and will forever have it. We have been told over and over, “If you don’t use it, you lose it,” and I feel like this is correct even with treatment. Because of this phrase, it’s been hard trying to balance letting my child be a baby, and ensuring she gets what she needs for the day in regards to exercises, appropriate rest, and adequate nutrition. My husband and I both work full-time jobs and we do not work from home, so that adds on to the stress of trying to find someone who can care for my daughter appropriately.

    Not to mention I also have a newborn in addition to all this… I’m so tired haha!!

    • kevin-schaefer

      July 21, 2019 at 5:47 pm

      It’s very overwhelming, especially early on. Feel free to vent anytime. We’re here to support you.

Log in to reply.