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The Diagnosis

on October 1, 2014

If you scroll far enough through posts on our blog you will see that not unlike so many others we had trouble conceiving. We tried for years to get pregnant and eventually went to see a doctor who was able to help us. I will never forget that process. I was a weak stomached woman who feared needles and suddenly was having to be stabbed with them multiple times a day for several months. But it worked! I remember the day our nurse called with positive test results. “This is good news. You can be happy.” But I was afraid to. My dream of mothering more children and giving Bailey a sibling could be ripped away at any moment. Celebration would come after my six week ultrasound when our doctor waited until the last moment to say, “you’re having twins!” For an infertile woman it was like hitting the lottery. It was also a chance to give Bailey the brother he wanted and me the daughter I hoped for.

I spent much of the pregnancy worrying just like other pregnant moms do. Will my children have all of their fingers and toes? Will they have hair? Will they be healthy and perfect? Due to the high risk of my pregnancy I received numerous ultrasounds. Little things started to show up that worried me more and more. First a problem with the umbilical chord. Then a baby who did not practice swallow and showed no image of a stomach. I started questioning our doctor. Did this baby have Down Syndrome, or Heart problems? He assured me that everything was fine. I shared with a few close friends and family members that I was scared one of my babies did have Down Syndrome, but eventually pushed that fear away when she was prenataly diagnosed with a birth defect called esophageal atresia, an esophagus that did not connect to her stomach.

We transferred our care to a women’s and children’s hospital capable of handling the surgery doctors suspected our baby girl would need. At 37 weeks (which was awesome for twins) I had a scheduled C-Section. The operating room was filled with so many people dressed in scrubs. It was overwhelming to see them all shuffling around the room preparing things for my babies arrival. One doctor wheeled up and asked what song I would like our children listening to when they entered this world. I never knew you could choose a song and was not prepared so I asked for contemporary Christian music. Our Twiggins were born hearing “Strong Tower” by Kutless. I think it was God’s way of reminding us to lean on His strength through the journey that was to come.

The next few days were a blur. Confirmation of her suspected birth defect came immediately. Twenty four hours later cardiology confirmed heart defects that would require surgery. Seven days later a geneticist confirmed Down Syndrome. The only thing we knew about Down Syndrome was that surgery could not “fix” this diagnosis. We were devastated and frightened by something we knew nothing about. Our dreams of having a healthy little girl were gone.

That evening after the boys had gone across the road to sleep at the Ronald McDonald house I sat on my makeshift bed (couch) near my daughter and cried. A sweet nurse came in and put her arm around me. She told me that everything was going to be ok and offered up the names of several staff who had children with Down Syndrome that I could talk with. The next morning a social worker came in armed with books and pamphlets about what Down syndrome is and what we could expect. Slowly, we started to accept this new life we had been handed. Yet I still was afraid of my daughter. I did not know how to hold her or change her diaper. She was covered in wires and broken. And though I wanted to hold and love her so badly, I was afraid that I would break her worse. These five words from a nurse so special to me changed that. “She is still a baby.” I cry just typing this.

My friends, this journey with my daughter has taught me many things, but the most important lesson is this:
Down Syndrome is not something to be feared. Audrey is a beautiful and normal child. She smiles, cries, laughs, yells, plays, learns and loves just like her brothers, just like you and I. And while she is different from you, so am I and everyone else in this world, she is also the same. In fact, she is more similar to you than she is different.

October is National down Syndrome Awareness month. Around 90% of pregnancies with a prenatal diagnosis of Down Syndrome are terminated. Why? Is it for fear? Is it for a societal prejudice that is so far off from the truth that I am angered just thinking about it? It is time to educate society about the beauty that comes with being different. It is time for society to recognize that we are all different and all have value.

My friends, will you stand with me on this? I will be posting information about Down Syndrome, facts, myths, reputable links and featuring others that have Down Syndrome on my daughter’s facebook page, http://www.facebook.com/audresarmy
Will you share these posts? Ask questions? Help us educate others so that they do not miss out on the beauty that I am blessed to experience? Will you take the #321dancechallenge posted on her page? I would be eternally grateful, and it may save a child’s life.

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One response to “The Diagnosis

  1. Marilyn Betts says:

    Audrey is the love of our life’s along with her brother’s & mommy & daddy . She has the best parents in the world .Mom you took on the most important person in her life .Your dad & I will always be here behind you . We love you honey. 🌈❤U

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