Simonsen remembers walking out of Pottery Barn Kids, where she had just bought cute sheets for her unborn son, Carter, and becoming swept up in the throngs of holiday shoppers.
But someone caught her eye.
Amid the chaos, a girl about 12 years old sat with her parents, absorbed in her phone just like most girls her age. Except this girl was different; she had Down syndrome.
Simonsen couldn't recall seeing anyone in Charlotte, N.C., with Down syndrome. She stopped and watched the young girl and her family for just a moment. Something compelled her to take in this beautiful, so-close-to-typical family. She didn't really understand why.
Several weeks later, she learned Carter might have Down syndrome.
"The doctor matter-of-factly told me that he saw 'a significant issue' just seconds after he started viewing the [ultrasound] screen of my still squirmy Carter," Simonsen remembers.
"Before I knew it, a genetic counselor was in the room and I was told it looked like [Carter] had a heart defect and that I would need to see a pediatric cardiologist ASAP."
Prenatal and diagnostic testing: What to know before you test >>
"Too late for an abortion"
Simonsen knew very little about Down syndrome and didn't understand that a heart condition could indicate the genetic condition called Trisomy 21. She certainly wasn't prepared to discuss abortion moments later.
"The doctor immediately asked me about abortion and said it was too late in our state for me to have one but I could go out of state," Simonsen shares. North Carolina law prohibits abortions after 20 weeks' gestation.
"I was confused," Simonsen says. "Why was he talking about abortion? How could he be so cold? Was the heart defect not fixable? He said that he suspected Carter had Down syndrome because of the birth defects and a couple of short bone measurements."
For Simonsen, abortion simply wasn't an option. She had declined genetic testing earlier in her pregnancy because "I knew there was always a possibility of my child having a genetic condition," she explains. "I felt that I would love my child regardless of any issue that might come up."
Not one to sit idly by and wait for life to unfold, Simonsen chose to have an amniocentesis, which can provide a definitive diagnosis. "I wanted to be prepared and understand any obstacles Carter and I would be facing," she explains.
{pageBreak}
No time to waste
While she waited over the Thanksgiving break to receive the results, Simonsen embraced and then tackled her potential future. "I went home and started Googling Down syndrome and heart defects, and overanalyzing all of the ultrasound pictures I had received over the past 20 weeks."
Simonsen had undergone in vitro fertilization as a single woman of "advanced maternal age." She was not about to wait for someone to explain Down syndrome to her.
The road to pregnancy
Simonsen had decided to try IVF with the support of family and friends. "I always knew I wanted to be a mom," she says. "I love kids and babysat since I was 12. I have nine amazing nieces and nephews."
While being a mother was her dream, being a single mother really wasn't the original plan. "Like most women, I hoped I would do things in the 'normal' order," she shares. "Meet someone, fall in love, get married and have kids.
"But, since I had not yet met Mr. Right, I knew that I was getting older and that my Mr. Right could come later, and hopefully he would love me as much as my child," Simonsen says. "Otherwise I would be fine on my own with my support of family and friends."
"I know my… having a child as a single parent raised concerns for them," she admits. "But knowing me, they knew that once my mind was made up, I was going to move forward and that I would be a great mom."
What to expect from the 20-week ultrasound >>
Getting the diagnosis at 20 weeks
Moments before walking into a doctor's appointment the week after Thanksgiving, Simonsen answered a phone call from her genetic counselor. The results were in: Carter had Down syndrome.
"I was a complete wreck at the appointment," she remembers. "I could barely speak."
At that appointment, her physician discovered Carter had two heart defects: an AVSD and Tetralogy of Fallot. Both were fixable and would require surgery at about 6 months.
"It was a lot to process in one day," she shares. "My vision of my son's life and of my life as a single mom was completely unknown and scary. I knew I would need help, as my family lives in California. I have amazing friends in Charlotte but knew I could not fully rely on them as they had their own lives, too."
Always the picture of proactivity, Simonsen reached out to the Down Syndrome Association of Greater Charlotte, North Carolina, that day.
"I knew I would need to lean on other moms and families who also had children with Down syndrome. I joined groups on Babycenter.com for Down syndrome and the two specific heart defects. I wanted to be educated and know what to expect."
An everlasting friendship
Simonsen's leap into action doesn't shock Lisa Crowley, who met her in third grade.
"We have been friends through Snoopy obsessions, braces, bottle-thick glasses, first bras and doomed teenage romances," Crowley explains. "She may know me in a way that even my husband doesn't because she's been my friend since I was 7 years old."
While the two attended colleges in different states, they visited one another and talked often. When Crowley married in Maine, Simonsen was there as a bridesmaid. When Crowley had her first child, Simonsen was there for moral support. As their adult lives continued in different directions, the visits became fewer and further apart.
Then Simonsen went into labor at only 23 weeks.
"I caught the very first flight I could," Crowley says. "My son was born at 30 weeks, so I knew that at 23 weeks, Carter's life was fragile, and she was facing the most emotional experience of her life."
{pageBreak}
Meeting Carter
On December 20, 2013, Simonsen began bleeding. She immediately called the nurse and drove to the hospital.
"I was monitored overnight and was having contractions, twice every 30 minutes. The high-risk doctor arrived in the morning and was going to see if I could have a cerclage procedure done to slow things down. Unfortunately, Carter couldn't wait!"
Simonsen says the NICU team had barely finished setting up in the room when her water broke and Carter arrived. "I didn't even have to push. He didn't cry. He was 1 lb 1 oz, I later found out."
Doctors ventilated Carter, and Simonsen was able to see him "for about 10 seconds before they took him to the NICU."
Three hours later, Simonsen was allowed to go to the NICU and be with Carter. There, she met Mary. "Mary was Carter's nurse on all of his life milestone days: his birthday, the day he was baptized and the day he died."
Simonsen says she was in shock that Carter had arrived. "He was so small but so perfect. He had fingernails, toenails and hair. He had my big feet!" And just like in utero, "he was very fidgety!"
Execution mode first, then emotions
Simonsen is a visibly strong person. When she talks about Carter, her voice stays steady even when her eyes deceive her, watering and occasionally letting a tear escape.
"I was never angry about Carter having Down syndrome or the heart defects, as I was reading some parents say on BabyCenter," she says. "I was sad at first, which now I feel guilty about. How could I be sad about having a beautiful little boy?"
Over the 10 days after Carter's birth, mother and son learned a little more about each other. "He had a personality, which I guess I didn't really expect with him being so little!" she says. "He was strong. The first time I was able to take his temperature under his arm, he fought me when I tried to place his arm down."
"I always told him that he was doing a 'good job' and that I was so proud of everything he was doing to stay with me and get bigger," she remembers.
On Christmas day, while the nurse changed Carter's bedding, Simonsen was allowed to hold him for the first time. "Holding him in my hands was the best Christmas present I will ever have."
Carter passed away on New Year's Eve, with his mother by his side.
Memories of Carter
Carter's short life managed to change the lives of so many others.
"What I remember most is how immediate love is," shares Simonsen's friend, Lisa Crowley. "You can meet a beautiful baby who weighs less than a grapefruit and immediately be in love and affected deeply.
"Carter's life was just 10 days, but meaningful. He brought many people together and likely changed the trajectory of Lisa's life."
Staying positive
For Simonsen, old and new friendships bolstered her strength in the weeks and months before and after Carter's passing.
"I was moved by how Lisa's friends were so supportive," Crowley says. "The experience was also a great reminder how friends can be your family."
Somehow, Simonsen stays positive through it all. "My life has been a series of ups and downs, especially over the last 7 years," she says. "I believe the cliché that everything happens for a reason, and I try to learn from those experiences. I know that I am strong enough and have great support so I will never be in a position where I cannot recover."
{pageBreak}
"Be a good friend"
Simonsen's advice for other women considering the seemingly solitary path of IVF as a single mother may sound unconventional, but after everything she has been through, perhaps it is logically simple.
"My advice to single women is, be a good friend," she says. "Invest time and energy into building and maintaining relationships and be genuine. Without my friends, some I have known for many years and some only a few months and weeks, I would not be able to get through tough times.
"I may not have the family most 43-year-old women have — a husband and kids — but my friends are my family. I would be lost without them."
Never give up
"Lisa is tenacious and resilient," Crowley says. "She wants to be a mother and is willing to go through amazing lengths to become one. She never fell apart. Just one foot in front of the other. She was overwhelmingly positive when professionals around her were less than optimistic.
"I'm not sure how I would react in the same situation, but I hope it would be with as much grace as Lisa."
Simonsen still has faith her soul mate is out there and she can have the family she dreams about. "I would like to think that I will meet a guy where everything falls into place. We [would be] compatible but also different and complement each other.
"Sometimes I wonder what he might be doing right now and what his life is like, when our paths will cross. Until then, I just move forward with my life and try to be thankful for what I do have, and if a guy comes along, that would be a great 'extra.'"
Advocating for people with Down syndrome
Unbelievably, Simonsen learned her corporate job was being eliminated the same week she returned from maternity leave. While many people would dive under the bed covers and ask, "Why me?," Simonsen chose to pour her newfound free time into volunteering.
"I am still involved with the Down Syndrome Association because I feel that even though Carter did not survive, his life had so much meaning," Simonsen shares. "It has given me a new purpose and I will never be the same because of him. I didn't get a chance to be the long-term, hands-on mom I wanted to be, but I can volunteer and make a difference in other kids' lives.
"The Down Syndrome Association was there for me when I needed them… I have met so many amazing moms and their kids, as well. Inspiration is abundant! I hope to be a part of growing the Association to its full potential: increasing awareness to the community, raising funds for programs and research and helping plan fun events that the kids and families can look forward to and enjoy."
Oh, and Simonsen has a few other things on her to-do list.
"I am hoping to start working again soon and also continue volunteer work. I am trying IVF one more time. I would like to adopt a child as well in the future. I want my children to know all about Carter. He was their big brother who made such a big impact in his short 10 days on earth."
Does anyone doubt this woman will do all that — and much, much more?
More about Down syndrome
I have Down syndrome and run my own business
Down syndrome diagnosis: Find support, not propaganda
Down syndrome: After high school, what's next?