God Authored our Disability Story
God authored our disability story. It took a while for guest blogger Valeria Conshafter to say that about her daughter’s birth and EA/TEF diagnosis. In this post, she traces the journey from what she wanted her daughter’s story to be to what it is. For those of you struggling to accept your child’s story, may her words grant you perspective and faith to know that it is good.
We can’t change history. We can’t tell our life story differently. Things just had to happen this way.
My daughter was born with a birth condition known as Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF). I didn’t plan for that. I didn’t want that for her. Or us. I had no idea that was coming. But it did.
The unexpected news of your baby being born with a rare birth defect and multiple other congenital anomalies was shocking. She was right there within arm’s reach, but we were not able to hold her until weeks later after her birth. Everything went wrong.
The story I believed would be mine to tell was of a perfect birth, natural, special, with mom and baby doing well announcements.
The story I wanted to tell long before she was even born was that we had a healthy and perfect baby and motherhood was amazing minus the feeding schedule and poopy diapers.
I imagined our story to be exactly like the ones I’d seen before. Mom and babies on play dates, parks, toddlers eating by themselves. I imagined us traveling with our baby to see friends and family everywhere, going oversees to meet my family in Brazil. I imagined the perfect beach vacation with my baby full of sand and those amazing first time on the beach photographs. I envisioned all the perfect first holidays, filled with family, fun, and special baby outfits. But no, that was not our story. Ours was different. One that I did not plan for, or ever imagine being possible.
It so happened that God authored our story. It had nothing to do with what I wanted or planned for. He had other plans for us and decided to bring our daughter into our world just the way she was supposed to be. Birth defects and all.
As first-time parents, bringing your newborn baby home is already overwhelming. Bringing a special needs baby home after months in the hospital was overwhelming, challenging, and scary. I remember not wanting to leave the hospital because I didn’t think I would be able to care for my daughter well enough. When I heard the nurse telling me, if she goes blue, rush back to the hospital, I thought I was living a nightmare. Parenting sounded terrifying!
Our first year was not an ordinary one.
We were back and forth to the hospital more than I can recall. We skipped play dates, traveling, and all the normal things parents do before their baby turns one. There were two major surgeries that first year and a total of 12 surgeries before she was 4.
Mealtimes took forever and were always stressful.
Most of our holidays were spent in the hospital, like her first Thanksgiving, Halloween, Valentine’s Day, and our birthdays. We left the hospital on Christmas Eve to spend Christmas at home and were back again before the New Year. Luckily, we spent her first birthday at home, but our baby could not eat solids by mouth yet.
Her birthday cake was just for the pictures.
In between hospital stays we looked for glimpses of normalcy and were grateful for the break. It was not easy. The visits to the various specialists were a constant stress followed by a multitude of instructions, tests, and daily therapies. There were critical times, scary moments, and 911 calls. There were long days and endless nights in the ICU when we did not know what to expect for the next day.
Fortunately, God always knew!
When I couldn’t see one day to the other between sleepless nights, inconclusive results, and surgery outcomes, He did. When I was at my lowest, He lifted me up. When I failed to believe, He showed me differently. When I doubted, He proved me wrong. And so, we kept on going. Praying. Trusting. Being amazed by His grace and promises.
Our story has changed over the years.
There are still challenges and the future is unknown. But so much has passed. Today, I am so grateful for all our girl has overcome. I am still in awe about God’s power, healing my daughter so she can be the teenager she is supposed to be right now. We’ve learned so many lessons from her. She is a fighter. Determined. Strong. Resilient.
Most of all, I love our story! It could not have been told differently. God authored our story, and it is our life story. Hard, broken, unique, but ours to live and to tell.
I would not change a thing.
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Valeria Conshafter is native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband, Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can reach Valeria on Facebook, on Instagram, and on Twitter.
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Valeria Conshafter highlights the differences between her story and her daughters in “What does my child remember about EA/TEF treatment?”
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