Friday, October 23, 2015

DSAM: Nicole's Story

All month long I have had the pleasure of sharing stories from women to whom I am connected to through the extra copy of the 21st chromosome. Who knew chromosomes could connect people? another place that I find gratitude. Nicole is also the founding member of the new local advocacy and education group: CCDSN - Central Coast Down Syndrome Network. I'm proud to serve on the board of this local organization, along with other mothers and it is the first in our area!

Join me in wishing the beautiful Miss Amelia a HAPPY 2nd BIRTHDAY! and enjoy her equally beautiful mama Nicole's story.

On October 23, 2013, I gave birth to my second daughter. A beautiful blue-eyed angel, whom I named Amelia. I knew months before I had her, that would be her name. In fact, thanks to an insufficient placenta, there were a few things I knew about my child before she was born. I knew she was a she.  I knew she was petit. I knew she would be born via c-section. I knew that she was very healthy. I knew sh would wear a Sleeping Beauty costume for Halloween.  And above all, I knew she was a fighter. At twenty-nine weeks, my perinatologist told me to be prepared to deliver early as she didn't think my placenta support my unborn girl for much longer. She told me that I would be lucky to reach thirty-three weeks. So imagine her surprise, and the surprise of my OBGYN when we made it to our scheduled c-section at thirty-nine weeks, without going on bed rest or leaving work early. So, imagine my surprise when on October 24, 2013, the pediatric hospitalist on duty came into my hospital room to talk to Dan and I about trisomy 21.

Dan was not shocked, for the first time in 24 hours he was able to admit out loud that he thought there was something "different" about Amelia. Through the tears forming in his eyes, he looked strangely relieved. I, on the other hand, was in complete shock, I was numb with it. When the physician and nurse left my room, they took Amelia to check her into the NICU and begin some tests. Dan and I were unable to go with her as they were doing a procedure in the NICU and during that time no one was allowed in. Soon after, Dan looked at me, he told me he loved me, he told me it was all going to be fine and he needed to go out for some air. As he kissed me I could feel the numbness wearing off and pain and fear taking its place.

 I took that time to call and text a few relatives and friends.with each conversation the pain and fear took over more until I was a sobbing mess full of irrational thought. Until the day before I had never met anyone with Down syndrome. I knew nothing about Down syndrome, other than the common misconceptions. Suddenly, pain and fear were accompanied by darkness. And then my natural instincts took over.  I grabbed my iPad and began to research, and research. I called down stairs to the ED, where I work as a Data Coordinator, and spoke to my director. She ran up stairs with a pad and some pencils so I could make my notes. I made calls to physicians I knew to get referrals  and copies of articles from medical journals. I was determined to be an expert on all things related to Down syndrome.  With every piece of information, I began to feel more powerful, more in control.  The darkness, pain and fear were being locked away in a very small place deep down inside of me. 

The information I had obtained in those few hours confirmed what the pediatrician said, my beautiful, perfect daughter had Down syndrome. That was abundantly clear to me the first time I was reunited with her in the NICU. Her low muscle tone and tongue thrusting were no longer little quirks. What the information couldn't tell me is what having Down syndrome would me for Amelia, or our family. That unknown would allow the darkness, pain and fear to escape violently from its hiding spot for very short periods of time when I was alone. 

Over the next fourteen days, I got to know Amelia. From day one she was the decider of her own fate. When she was ready to be off oxygen, she reached up and disconnected the blue tube. Everyday I wen to the NICU at 8 am and dressed her in a new outfit. I even dressed her up in her Sleeping Beauty costume on Halloween.  I could tell by the sly look in her eyes she liked the extra attention she got while wearing the princess costume. Finally the day came when Amelia was coming home. Although, Amelia's personality shined so much brighter than her diagnosis. I was afraid. The irrational fear of her coming home pushed the pain and darkness close to the surface. 

It wasn't until Amelia had her first appointment with her pediatrician that I was able to reconcile Amelia and Down syndrome.  After he examined Amelia, read through her medical records, he turned and looked at me. I knew that my pain fear and darkness were all present on my face, like a bad Halloween mask. He very carefully said "She's just a baby. Do with her everything you would if she didn't have Down syndrome."  I asked about daycare, if I would need to quit my job and he said "Would you put her in daycare if she didn't have Down syndrome?  She's just a baby".  No truer words were ever said. 

I often look back at the first couple of months after Amelia's birth and I feel silly, and ashamed. I am ashamed I had so little faith in my daughter. At three months old Amelia started therapy and from day one she has eagerly met every challenge her therapists have given her. Earring the nick name "Amazing Amelia". She meets all of her milestones, some on par with "typical" children and some a little slower. All of them in her own time. 

More importantly, she is already a loving, compassionate, strong willed and sometimes devious little person, in other words: a typical two year old. This is evident by the way she feeds her baby doll everyday.  The way she comforts her older sister, by a soft rub on the arm. And the way she lights up at daycare when she's with her friends. She never lets anyone push her around, nor does she take no for answer.   As we head into the "terrible twos" she makes her opinions known!  

The pain, fear and darkness are almost completely gone. They are being replaced hope, love, admiration and thankfulness. I admire my daughter's strength and determination. And I am thankful to her and her extra chromosome for what they have given me. Over the past two years, I have found a purpose greater than I ever had before. I will do my best to make a world that is accepting of my daughter. I will follow Amelia's example, I will not give up. I will be an advocate, not only for her, but for everyone that is thought of as "different".  I will fight anyone who tries to get in her way. And I know that I am not alone. Over the last two years I joined a wonderful community. A community full exceptional people that I wouldn't otherwise have the pleasure of meeting. 

Although, I am definitely more raw since Amelia's diagnosis, overall I am a better person. I am a better mom, to both of my daughters. I will admit, it is difficult and sometimes exhausting. However, it is always worth it. And I wouldn't change anything about either of my girls. Down syndrome is as much a part of Amelia as I am. I am no longer afraid of Amelia's Down syndrome, I have truly accepted and embraced it. And you should too! 

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