31 Days of SMA: Facing My Challenges in Becoming a Mom

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by BNS Staff |

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Megan DeJarnett, left in wheelchair, with her husband, Jake, and her sons Bronx, left, and Shai. (Photo courtesy of Megan DeJarnett)

Day 2 of 31

This is Megan DeJarnett’s (@megandejarnett) story:

I remember being around 10 years old when I heard the doctor tell my parents that the average life expectancy of someone living with spinal muscle atrophy (SMA) type 2 was around 15 years. I’d always been raised that no matter what life threw at me, I could take on the challenges, find new ways to do them, and accomplish big dreams. But for some reason after hearing that statistic, it was very hard to dream past the age of 15.

However, I hadn’t forgotten the things my parents taught me: dream big. I remember those years approaching and feeling like every other high school girl, dreaming about the future, getting married someday, and raising a family. I always imagined becoming a mom.

At the age of 23, my high school sweetheart of a husband and I decided we were ready to start building a family. We were aware of the possibility that doctors would discourage pregnancy for my body. We were open to whatever way forming a family needed to happen, but the true desire of my heart was to carry my own children.

We sought out a high-risk specialist, who felt it was safe for me to move forward with getting pregnant. To be honest, the pregnancy was quite simple. The bigger question was “What was parenting going to look like for someone with SMA with limited mobility, complete dependency on others, and much more?” But we were willing to find out.

At the time, I didn’t have a community of other moms with SMA to glean from. I had to create my own path, figure things out, and learn to raise my babies the way I was going to raise them.

Someone once asked me what my greatest strength as a mother was, and I remember answering, “I get to give my children a chance to view life through some different lenses. I get to use my voice, which is one of my greatest strengths, to love, to care for, to teach and encourage, and to raise some wonderful children.”

I can say that the beginning years had more challenges, but now as my two sons approach young boyhood, it has been a joy.  They don’t know many other children with moms who are in wheelchairs, but they certainly see it as a bonus right now, and I’m living for it.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.