Holding on to memories has helped me get through the hard days
Perfect birth of daughter lost to Dravet syndrome is imprinted on mom's soul
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Tomorrow would be Austen’s 11th birthday.
When I found out I was pregnant with Austen, I wasn’t sure if I was going to have another home birth or not. I loved my home birth experience with Atlas in the fall of 2013, but we were stationed in Hawaii at the time. Now we were back in my hometown in Texas. I loved my obstetrician in Texas, and planned to see him throughout my pregnancy, even if I decided on a home birth in the end.
From the moment I saw those two pink lines, I felt that something was going to go wrong. For the first time in any of my pregnancies, I was genuinely surprised when I saw the heartbeat on ultrasound. Later on, I became convinced that my scans would show that she had a heart defect, or something worse.
Month after month, the scans came back clean and perfect. My pregnancy with Austen was the easiest of all three, in fact. No morning sickness, no physical pain, and really no fatigue beyond what was normal for a mom who was chasing around two young kids at home already. Still, I couldn’t seem to release the breath I’d been holding.
A quick, worry-free labor
In the end, I chose to have another home birth, in large part because my obstetrician was planning a vacation right before my due date, and I tend to go into labor a little early.
If memory serves me correctly, I woke up at about 11:30 p.m., the night Austen was born, not with a contraction, but with the feeling that a rubber band was being snapped across my back. This labor was so different from my previous two that I told both my midwife and my best friend (who served as my birthing coach) during my first calls to them that I wasn’t even sure I was in labor. I told them I’d call back in an hour if I still felt off. Thankfully, both decided to come over right away. My midwife had a drive of more than an hour, and by the time I realized the baby was definitely coming, she was only a few minutes away. She arrived with about 20 minutes to spare.
After only three hours of labor, Austen arrived in my arms at 2:42 a.m. She weighed in at 7 pounds 14 ounces and was 21.5 inches long, a full two inches longer than either of her siblings. Ten fingers, ten toes, and a head full of dark brown hair. She was perfect in every way.
That morning, lying on the couch after everyone else had left or gone back to bed, I finally let out the breath I’d been holding for the last nine months. In that moment, with Austen’s head lying on my chest, my world was peacefully perfect.
Nine years of laughter, hugs, and kisses
I’ve held onto that memory tightly over the last 11 years. When the first set of seizures ripped into our world and doctors asked how she was at birth, I could honestly answer them that she was perfect.
When the chaos of Dravet syndrome and seizures tore through our lives like a tornado picking up everything in sight, I could go back to that moment of absolute joy.
And in the almost two years since I last bent down to kiss her head and smell the sweet smell of her hair, I’ve returned repeatedly to those first moments with her in my arms. I try to hold on to that newborn smell, the sound of her first cries, and the feeling that for a moment in time, my world was perfect and complete.
I got to spend nine amazing birthdays with my baby. Yes, it was nine years of battles against Dravet syndrome and all that it forced Austen to endure. But it was also nine years of laughter, of hugs and kisses, and sneaking away dinosaur costumes to get washed during naps. Nine years of loving her, and better yet, being loved by her.
I’d give anything for just one more moment, but I’m so grateful for the ones I had. Because that feeling wasn’t fleeting; it was a moment imprinted on my soul. And one I can revisit whenever my heart desires.
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.
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