“When Mathew and I found out we were going to have a baby for the first time we were so overjoyed. We had the cheesy baby announcement photo shoot and shared with our families on Valentine’s weekend. We went to all of the doctor appointments together. And when it was time to go to the anatomy ultrasound, like many parents, our sole idea of what the appointment was for was to see if we were having a boy or girl.
The day of the anatomy ultrasound changed our lives. It made us different. We had just finalized names right before our appointment and when the ultrasound tech told us we were having a girl, we cried with joy and named our baby Addison. Moments later, the ultrasound tech made a serious face. He became quiet. In that instant, we knew all had changed and something was wrong. The ultrasound tech explained the doctor was going to need to come in and speak with us because he saw something of concern on the scan. To be honest, I don’t remember what the tech said after that moment.
We held back tears of worry until he finished and then sat in a quiet and cold room. As the doctor came in he mentioned the words ‘tumor’ and ‘maternal-fetal medicine doctor’ and ‘amniocentesis,’ We. Were. Terrified. Instead of running out of the doctor office hand in hand smiling from the news of having a girl, we walked out scared, confused, and sad. I remember calling our parents and sobbing, saying, ‘There’s something wrong with the baby!’
The following months were a blur of good and bad. We had an Easter-themed gender reveal party, maternal-fetal medicine doctor appointments every two weeks to keep an eye on what we found would be a Sacrococcygeal Teratoma (SCT) on Addie’s bottom, a terrifying MRI and speaking to a world-renowned surgeon, and an appointment with another surgeon. We got a tour of the NICU where our Addie would stay once she was born, and got everything ready for her entrance into the world.
During all of this, I was a first-grade teacher. My students didn’t know anything was wrong with the baby, my student’s parents didn’t know, but the school staff did. It was difficult because many didn’t understand why I was out so often for appointments, why I wasn’t myself, why I felt like I was drowning with tasks. I felt isolated. Alone. Misunderstood.
One day while taking the 45-minute drive home from work, I prayed. I had worship music on really loud and was having a good cry. I prayed for God to use Addie to glorify Him. I had no idea what that entailed but if she was meant to be born with this Sacrococcygeal Teratoma then I prayed it would be for His glory.
Once Addie was born in August of 2014, our lives changed again. We were parents of a beautiful girl and would soon learn all the things of special needs parenting. You see, all we knew about Addie was that she would have an SCT, but there was so much more that went on once she was born. Addie was born having trouble breathing. She spent a few hours with just oxygen and I heard her cry while being checked on by the Resident.
She was so feisty. Soon she was intubated, would need heart surgery at 8 days old, SCT surgery at 2 weeks old, g-button surgery at 3 months old, and then eventually a tracheotomy a week after that. Days turned into weeks which turned into months.
I quit my job to be at Addie’s bedside daily while Mathew worked long hours. He would wake up at 5 a.m. and head to work, work til 7 or 7:30 p.m., drive the 30 minutes to the NICU, be with Addie for an hour, then we would drive our separate cars to a restaurant for dinner and then home – just to do it all over the next day.
We spent holidays in the NICU. Addie’s first Halloween, first Thanksgiving, first Christmas, New Year, and Valentine’s. Even though we were in the hospital, we wanted her life to be as normal as possible. We brought colorful blankets to use as her bed linens, fun light up and musical toys to keep in her bed so she wouldn’t feel alone when we left for the night, books for us to read to her, and even Christmas presents with a Christmas tree and a blanket to sit on so we could have a real Christmas together. Our motto was ‘Home is where you are,’ and wherever Addie was, we made sure it felt like home to her. After 6 months, 6 surgeries (including one for a hematoma) and a new diagnosis of epilepsy, we were sent home. Sadly, after 3 days, Addie showed signs of respiratory distress and ended up back in the hospital – this time in the PICU, for 4 more months. But after 10 months in the hospital, on June 22, 2015, Addie came home for good.
We worked hard to find our new normal at home with Addie. I took care of her while Mathew worked, we would play together and have therapy sessions, and then Mathew would come home and I would make dinner. We finally felt like a real family. Together. Whole.
Over the years we’ve learned more about Addie and her diagnoses. While she doesn’t have a particular syndrome she does have a chromosomal abnormality which can cause a myriad of complications. Still, we don’t let that bring us down. Addie gets snuggles all day, has multiple therapies at home during the week, school at home, and throughout the year participated in Girl Scouts, cheerleading, and soccer with a local organization for children with special needs. Addie even goes to church! We speak on behalf of our local children’s hospital to help fundraise, bring awareness to the special needs community, and tell others about Addie and her story.
Addie changed us. The people we are now is not who we were when we first found out we were having a baby. We are more loving. We are more understanding. We are more compassionate. We are advocates. If it weren’t for Addie, I don’t think Mathew and I would be these things. She has brought so much joy into our lives and to others. She has brought others to Jesus- people who have prayed that said they had never prayed before. She is literally an angel from heaven.
Now Addie has epilepsy, hydrocephalus, and is a respiratory failure fighter. She is silly, she is funny, she is a fashionista, and she is a lover of all things pink. Addie is also a big sister now to a 1-year-old brother, who is so protective of her already. I don’t know what we would do without Addie. Despite all the scary moments, the ‘what-ifs,’ and diagnoses, it is a true honor to be her parents.”
This story was submitted to Love What Matters by Stephanie Wolfe. Follow her on Instagram here. A version of this story can be found on her website here. Do you have a similar experience? We’d like to hear about your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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