I wouldn’t change a single thing about my daughter’s story
Second guesses shadowed my moves to Colorado, then back to Texas again
Written by |
I tend to second-guess myself. I’ve done it my entire life. But it got worse when I became a mom, and worse again when I became a mom to a special needs child.
When your entire world is centered around keeping a child alive, it’s hard not to fixate on what you’re doing right or wrong for that child.
We moved to Colorado less than a month after Austen received her Dravet syndrome diagnosis to gain access to medical cannabis for her, and to start seeing a neurologist who specialized in Dravet patients.
Although I knew we were moving for the right reasons, I still wondered if it was the right choice. We had only been back in Texas for two years at that point, having moved back when Austen’s dad got out of the military. In Texas, my children could be raised while surrounded by family, and I had family members to rely on when times got hard with Austen’s seizures. Although some family members eventually moved to Colorado with us, at first we had no one but ourselves. We had to build a community from the ground up, try our best to keep Austen healthy, and aim to keep life as normal as possible for her siblings.
The right choices
As time went on, we found a church that became our family, and other special needs families rallied around us during hard times. We dug in, made friends, and explored our new surroundings. I talked about the possibility of moving back to Texas, but I didn’t believe it would ever really happen. Colorado had adopted us, and while Texas would always be my home, Colorado quickly became my children’s home.
Then came my divorce, as well as needing to find a new job — all within a few weeks. Once again, I had to reevaluate what was best for my family. Working outside of the home meant I needed reliable child care that could handle the hiccups Dravet syndrome could throw our way at any moment, and my family in Texas stepped in. So, five and a half years after packing our bags for Colorado, I loaded up our lives once again and went back home.
The questions that had surfaced when I moved to Colorado quickly came back. This time, I wondered if it was right for me to take my children away from their friends, their church, and the doctors who had worked so hard to keep Austen thriving all those years. Was I making the right choice? The answer, just as it had been all those years before, was yes.
Coming home to Texas gave my children the opportunity to build relationships with family in a way they hadn’t been able to do before. Their cousins are their best friends, and their grandparents, aunts, and uncles are their caregivers when I can’t be. I started teaching at the same school I went to as a kid, a community that took my children in and loved and nurtured them in the same way they had me. And I found something I hadn’t even been looking for: a second chance at love with a man who treats my children as if they’re his own.
In the song, “The Dance,” Garth Brooks says he’s glad he didn’t know how his story would end, because even if changing it would’ve saved him from the pain he endured, he would’ve missed the many good things that led up to it. Austen’s story ended in June 2024, and yes, I’ve wondered if that ending might have been different if I had made it work in Colorado.
But the last two and a half years of Austen’s life were filled with so much joy and laughter, so many life-filled experiences that she wouldn’t have had if we hadn’t come home. Austen played soccer, rode horses, and was in regular classes with her peers. She got to go on beach vacations and grow up in the country, wild and free as I did as a kid. And when she went to heaven, people from every single one of those communities and activities gathered round and held the rest of our family close. They didn’t just hold our hands, they trudged through the grief with us.
Even knowing how Austen’s story ends, I wouldn’t change a single bit of it. Those decisions allowed Austen’s light to touch people near and far, and gave us all memories we can cherish until it’s our time to leave this world as well.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.