Each story we are able to share here on the blog represents a unique situation and a unique family. However, time and again I see that the same emotions, the same fears, and the same struggles happen to all of us, just in a unique way for each family. This is Aurora’s story and Amanda shares her daughter with the world and her story of learning of Aurora’s Down Syndrome Diagnosis.
As with all things in life there are far better stories and far worse stories than ours and we are forever grateful to Our Heavenly Father for the favor he has shown our sweet Aurora. Let me begin…. On May 2nd I woke up at 2:30am in no pain, checked my phone and preceded to the bathroom just like every morning before in my 9 months of pregnancy. Within 30 minutes of waking I started to have back pain, the pain intensified and lasted 60 seconds and dissipated for 3 min to start back up again. I was in Labor, Rory was 7 days early just like her brother Owen was 3 years prior.
This pregnancy was much different than my son, so the early arrival was a welcomed familiarity. I was very sick with Arorua for five months, unable to keep down sips of water, landing in the ER to stop the vomiting at times. The dThe prolonged sickness gave me new perspective on what a blessing good health is and the perceived control we have over our bodies being an illusion. Little did I know this would be a reoccurring theme.
As the contractions continued I woke up my husband and told him it looked like we needed to prepare to head to the hospital. I took a shower and called my mom. I arrived at Mon General and things progressed very quickly. I had intense contractions, my water broke and I hardly had time for an epidural.
It was a whirlwind labor. Our sweet Rory arrived after 15 minutes of pushing. She was loud,
squirmy, and a warm pink color. She was all together perfect. 6.15 and 21inches long with a head full for dark brown hair and the longest eyelashes I’ve ever seen. I was filled with excitement and relief she was here and safe. The OB handed her to me as soon as she arrive. My husband and I exchanged smiles. Then Drs. took Rory within seconds of her hitting my chest.
The Pediatrician was examining Rory on the scale while I was still completing labor. She took a step the the right and matter of factly said, “this baby looks like she has T21.” My OB turned and said “what?” the pediatrician replied ,”this baby has Down syndrome.” I just watched in silence confused. Wanting my baby back.
Another Dr. came into they room and they bickered back and forth, loud enough of all to hear. “She looks like she has trisanomy 21”, “no she doesn’t.” My OB asked them to leave.
Their words felt liked they echoed across a great void, a void that was create by the loss of what we thought our daughter was going to be and what those words meant for her future.
I can’t tell you want I felt in that moment. Nothing. Everything. Honestly, it’s almost like I was gone, that it didn’t really happen. My husband, mother and photographer were all in the room. They were quick to comfort me saying it wasn’t the case and to stay positive.
When I finally got her back in my arms I spent hours starring at her trying to see what they saw, desperately trying to convince the Dr. she was wrong. I saw it too. But, I continued to pulled out pictures of my son as a newborn, myself, and my husband comparing features.
Holding her asking my mom and my husband all the impossible questions.
“How could this be? We have no family history. We are not genetic carriers. I did all the things you should do while pregnant DHA, prenatal vitamins, no caffeine, healthy food. I’m healthy and 29. We are young. No Drs warned us this was coming.”
“Her ultrasounds were perfect. She’s perfect.”
The Drs continued to debate… see Rory doesn’t have the 12 markers that are typically seen in a babies born with Down Syndrome. She was perfectly typical in every way with the exception of her eye area.
In the hours that passed family arrived and we tucked away the possible diagnosis, not sharing with visitors as they streamed into the hospital. We celebrated her, we laughed, smiled, took pictures and welcomed our baby girl into our family with love and thanksgiving. Owen met his baby sister and fell head over heals in love and still to this day wants to smother her in kisses and hugs.
Shortly after the dr came back in, I asked everyone to leave the room. She preceded to tell us that children with this condition typically are born with holes in their heart and since there is a “feeling” she has Down syndrome they think it’s best to discharge me and send Rory to ruby for testing…. I fell apart.
The dr and my husband held me as I sobbed on the hospital bed. I was so fearful for my daughters life in the present moment and what this meant for her future. Would she live a normal life? Will people be kind and inclusive? Will she by loved be someone outside of her family? It was like someone released a damm holding raging waters of fear and doubt, the waters flooded my entire being in that moment.
I gathered myself and we packed up and headed to ruby. Let me pause and acknowledge my husband. He was and continues to be an amazing partner in this situation. He has been in the thick of it with me, having all the same emotions as I but letting mine come fist and supporting me through them. God knew I would need a man like Evan, he is such a blessing to me.
Upon our arrival we were greeted by a team of Drs.They stood in line outside our door rolling in one after another. Plastics, peds, cardiology, genetics, therapists. It was a long day of hard conversations and lots of tears.
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The first test was the heart echo. Rory laid on my chest for an Hour and half as they scanned her tiny heart looking for holes. We had to wait four hrs for the results. I will be thanking God until my dying day he spared her heart surgery. 40% of children with Down syndrome are born with sever heart defects, Rory was not one of them.
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Up next was genetics, the geneticist was cold and direct. It would take 24hrs for the initial results and 48 for more detailed reports. Those 24hrs were the longest of my life. I sent Evan home to take care of our son for the night, I wanted him on a normal routine and unaware of his sisters prolonged hospital stay.
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That night I held my baby, pacing the floor speaking life over her. Praying for her future. I got on my knees in that hospital room and thanked God for her asking him to equipped Evan and I for whatever outcome he had planed for us. I begged him to spare me from postpartum and to help Evan and I dig deep into partnership following the birth of our daughter. Then I slept…
I can’t say enough about the hospital staff that diagnosed Rory. They were so kind to us. The nurses and doctors spent so much time caring for us during the 24hr wait. I’ve never experienced so much compassion and supporting as I did in the days that followed my daughter’s birth. They all stayed positive. They never told us to downplay the hope Evan and I were clinging to. The constantly spoke positive about our girl.
The next morning Evan arrived early. We continued to wait for the results. Every time a doctor would walk down the hall I would hold my breath. I’d watch through the room window to see if they were coming to our room or turning off into another new mothers birthing suite. At this point I couldn’t sit down much,
I stood over Rory as she laid under her blue light, while being treated for jaundice.
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I calmly told Evan the results were most likely positive and we needed to tell our families what was going on. He called his parents and I called my father. The rallying a father offers when their child is in crisis is like nothing I’ve seen. Evans dad and my father were so encouraging. Our mothers were so caring and compassionate. Looking back it was a beautiful rare experience to be an adult and need your family in such a raw way, being so aware their efforts to show up and push you forward.
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When the Doctor finally arrived, Evan and I held one other, bracing for the outcome. With Evans arms wrapped around me and my hand on Rory’s head, I prayed as the words were leaving the Dr. lips.. I kept asking God to be with us, over and over I said those words in my mind.
I know Evan was holding me but it felt like we were being held. Like time stopped. A silence was present despite the nose of our minds, the hospital and the voices in the room.
The positive results tenderly cut through the silence as we received confirmation that Rory tested positive for Trisomy 21.
We didn’t let go of one another for a long time after those words were spoken. We held each other and stood by our sweet baby girl. Through our tears we promised her a life time of love and would do everything to give her the best life possible. We declared an abundant life over her.
So many more emotions, Doctor visits and conversations followed in the preceding weeks.Theres not enough space to hold the ongoing story of this experience. Though it continued to be overwhelming I can tell you Christ is was and is all over it in so many ways.
I decided to share this deeply personal story because you will be apart of it. You will see us out in town, you will go to church with us, your children will be in school and possibly on teams or Girl Scout groups with my daughter. You and your children’s actions, thoughts and feelings toward our sweet Rory will have an impact on our story. My deepest fear for Rory is people being unkind or not seeing HER, only seeing her diagnosis. I can already see + feel her sweet soul. she has so much to offer the world. I pray that others see it too.
Our odds of Rory arriving this way were 1 in a 1,000… there was no way to predict her diagnosis because Evan and I are not genetic carriers of trisomy 21. She showed no signs on the many ultrasounds we had done.
Down Syndrome outcomes fall on a spectrum from sever to mild. We won’t know until Rory grows where she will land on that spectrum.
As of now all testing is showing atypical results for a child with this diagnosis. Rory has great tone, perfect thyroid function, a healthy heart, perfect hearing, sight and developmental appropriate cognitive function for her age. We are forced to take this one day at a time. With love and grace we will run this race. Praying for Gods glory to be put in display in this little girls life and our family.
I have faced unexpected challenges in my life. In facing those challenges, I’ve learned we must make choices and make them fast when faced with shocking or emotionally hard news. You must choose to move forward, don’t let the feelings of anger or fear settle in making your mind their home. You must choose forgiveness over
Live life for the triumphs. To me success is not allowing disappointments to claim me. To love despite the chance it won’t workout, to hope when all hope should be lost and to trust the Lord when all signs point to Him failing you. I refuse to come out of life beaten down. I hope to teach my daughter all of these things and more.
I ask you to please keep Rory and our family in your prayers. Please pray for the Lord to be with her and increase her abilities with each passing day. Pray for my Son that his life stays as close to normal as possible. We are not sharing her diagnosis with him, we want him to love and develop a relationship with her without this knowledge. We also don’t want him to feel any less special than his sister.
Please see my daughter for the perfect girl she is.
Amanda is a wife to her husband Evan, mother to their two children, Owen + Rory, and the creator of The Glory Days Daily Planner, a planner specially designed for families + caregivers loving little ones with special needs. After working as a Public Affairs coordinator for 10 years she found herself as a full-time stay at home mom, following the birth of their second child, Rory, in 2017. Rory changed their plans, arriving with a surprise birth diagnosis of Down Syndrome. Amanda and her family currently reside in West Virginia. Their daughter’s birth diagnosis has etched deep grooves into their hearts, leaving them committed to encouraging families loving children with special needs by advocating and creating tools that will aid families in on their journey as a special needs parent. Amanda cares deeply for her community and believes God is always working for the greater good. Follow along on Instagram @roryblakeisgreat and @theglorydaysco
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