In Her Shoes is a series written by readers to give us a glimpse into their lives – what it is like to walk in their shoes. I am very excited to share with you a guest post written by my friend, Marsha. Today is a very special anniversary in her life, and she is telling us about her journey as a mother to a daughter born with Spina Bifida. Marsha and her daughter were one of the earliest cases of fetal surgery in the medical world. I experienced tears and goosebumps as I read her story, and I am honored to bring it to you. Let’s join our friend as she shares with us what it has been like to walk in her shoes. ~ Ginger
I was dreading the anniversary of the death of my girl, the one that I had named Summer. I had such dreams of the tall, blonde beauty that she would be, like her Aunt Jenny, and laid-back, just like her dad. Summer was everything wonderful in the world: easy schedules, warm sun, long vacations. A year ago, we had received the dreaded news that our unborn baby had Spina Bifida. They had told us that she would not walk, that she would probably be mentally retarded, and there was a good chance that she would not know who I was as her mother. There was also a majority chance that she would die before the age of 6.
November 12th was the day that my dream of a girl named Summer died right there under the sonogram lights at 19 weeks gestation. I mourned her loss for a full two weeks, and then I got an idea, and then a plan, and a hope. I decided to keep my daughter, and was I going to name her Autumn. I knew, even then, that the beautiful leaves of life as I knew it were going to fall, roots would have to be deepened, and it was going to be a long, long winter.
One year later, on November 12th,1999, I woke up with a song on my heart. “Be still and know that I am God….” I sang the song several times as I got up and started working around the house. A year had passed, and Autumn had been born. While things were going much better than the doctors had initially said, I was still flat out depressed about the losses that I had experienced. I didn’t have the healthy daughter that I thought that I deserved, and I had no choice but to quit my job because no one else would take care of her the way that I thought she needed to be taken care of. I had lost my identity as a Certified Public Accountant on the partner track. I had lost all of those friends that I got to have intelligent conversations with on a daily basis and so, so many other relationships had been distanced due to the intensity of what we were going through that whole year. It didn’t help that my dad had died just 14 days earlier, either.
“Be still and know that I am God.”
I logged into the computer and started chatting with my fetal surgery friends, the people that I had turned to every day for the last 351 days, even though none of them were in my home town. My heart skipped a beat when Al Lyons told me that our doctors had been published, finally, in the Journal of the American Medical Association! I looked it up and poured myself into understanding the detail that it documented to the whole medical world. And so crazy, so unexpected, it cited the progress of the first 29 babies in this ground-breaking medical study. Autumn and I were #29!
I was so excited! And proud! Tears running down my cheeks, reading it over and over, looking to glean any consistent information of what the other 28 kids had going on compared to my Autumn. And as I was sitting there with the printed journal in my hand, I heard on the radio that Rush Limbaugh was talking about the study and the dramatic difference that this could make for unborn children.
Just a little while later, a journalist from the Wichita Eagle newspaper called me. She had written a story on us almost a year ago, and she was so excited that she was almost yelling into the phone and I laughed with her. She said that saw it on the Associated Press post and told me that it was everywhere. I looked on the internet, and it sure was, it was everywhere. Everyone was talking about it. The Drudge report that night even!!
The beautiful picture of Baby Samuel’s hand during his surgery was getting even more attention, and I was just giggling with excitement that Autumn and I were 1 of 29 kids that did something super cool, that could improve life for thousands of people with Spina Bifida for years and years to come because now the doctors had proven that it was good and it did benefit the kids. I picked up Autumn and danced around the house with her, and she giggled with me. It was like the best birthday, and I just kept opening up presents all day long. People emailed me, “Did you see?” People called me, “I just saw this article!” Yep, me too and we are one of those 29.
I was taught very early in life that the world does not revolve around me. But that day. That day, it did. God knew what I needed that day and he gave me the Coolest. Gift. Ever.
“Be Still. And KNOW. That I am GOD”
Samuel Armas and his family are now friends of ours. They had the same surgery as Autumn, about 6 months later than ours. This is Samuel’s hand and Dr. Bruner’s finger.
At our first reunion, Autumn is front and center with the giant white bow, while Drs. Bruner and Tulipan are in the back.
Autumn, Age 2, trying to walk – personal photo.
Fast forward all of these years, an in-depth interview of Autumn and I:
Autumn is now 14. She’s smart, she’s independent, she manages her daily care, and she is the tall, blonde beauty that I dreamed that she would be. I love being her mother and I am coming back to many of the things that I was before Autumn, like a successful businesswoman and a happy wife with time for friends and travel. I got this crazy idea to go to Africa on a mission trip and help people fight poverty with financial concepts and business training. I am so crazy excited to do this and I wouldn’t have considered leaving Autumn for 12 days, while being out of the country, until just now. “She’ll be fine. She’s got it. Quit being so protective,” I tell myself.
“Be still and know that I am God.” ~ Psalm 46:10
Thank you so much, Marsha, for sharing your story with us today – what it is like to walk in your shoes. The courage and love that you have shown through the life of your beautiful Autumn, and the reminder to be still and to trust – even in what seems to feel like the death of a dream – is truly inspiring!
To read more stories, or if you would are interested in sharing your story, please go to the In Her Shoes tab near the top of the page. I love learning about the people in this series. Connecting with others seems to make the world feel not quite as big and scary. We’re all in this together. I can’t wait to hear from you, to read your stories, and learn more of what it is like to walk in your shoes. ~ Love, G
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