My husband and I went to our 20-week ultrasound expecting to get a few pictures of our first child and then head off to the airport for a weekend away. We never made it to the airport… We spent the next 8 hours being shuffled from exam room to office, back to exam room. By the time we left the hospital we had undergone an amniocentesis and were told that Down syndrome was the best-case scenario for our child. According to the doctors, it was more than likely that our baby had a chromosomal defect that was “incompatible with life.”
We spent the next three days praying that our baby would be okay… we prayed for Down syndrome. Not only were our prayers answered, but we received the most incredible gift we could have ever hoped for – we received Lily.
Within minutes of hearing that our baby had Down syndrome, we also knew she was a girl and we gave her a name. We didn’t want to spend the rest of my pregnancy thinking about our “baby with special needs” or our “daughter with Down syndrome.” Instead we just thought about Lily Kathleen and what we could do to make sure she’d be as healthy as possible when she arrived, and we would be as ready as we could be to take care of her. First, we contacted NADS. Then we read books and talked to other parents – lots of other parents.
During those last months of my pregnancy we faced one challenge after another. Just two days after hearing about the Down syndrome, we saw a fetal cardiologist who told us Lily had a serious heart defect that would require surgery, possibly just after birth. Weeks later we heard from another doctor that there was a possible tumor on Lily’s brain that hadn’t been there before. I underwent an MRI and after many more sleepless nights, the test results revealed no tumor or mass. We felt like every time we came to grips with a diagnosis or prognosis, we received another blow from the doctors. But we continued to remain positive, and we made sure that our family and friends remained positive as well. From the moment we told them about Lily, we let them know that we were okay with the fact that our daughter had Down syndrome and would need heart surgery. Our positive outlook allowed our family and friends to share in our joy and excitement. So when Lily finally arrived, she entered this world surrounded by love and enthusiasm. We were all so eager to meet her and finally lay eyes on the little girl we already loved so much.
The day she arrived is one of the happiest days of my life. There was no sad news or awkward silence in the delivery room. There was a baby girl with the biggest cheeks I’ve ever seen and fingernails that looked perfectly manicured. She had bright red rosebud lips and a mess of dark brown hair. She was not premature as the doctors had said she might be, and she was not tiny and blue. She was well over 8 pounds and very pink, and she was breathing on her own. She may have had a serious heart defect and a chromosomal disorder, but she was perfect. She was exactly what we had prayed for…
Four months after Lily was born, she had open heart surgery to correct Tetralogy of Fallot and an ASD. I was terrified to hand her over to the doctors that day, but I knew in my heart that she would be okay. We had come too far in our journey to have it end so soon. Much to our delight and relief, she came through the surgery without complications and she was home in only four days. She may have been tiny, gaining less than 2 pounds in her first 4 months of life, but she was a fighter and she proved to everyone how strong she could be. She continues to show us that – when she barely flinches while getting her blood drawn, or asks for pretzels 12 hours after a tonsillectomy. She never ceases to amaze me.
Lily is now 3 years old and has a younger brother, Luke. My husband and I always wanted to have at least two children and have them close in age. We didn’t let Lily’s Down syndrome change our family plan. We agreed that as long as she was healthy we would go forward. So Luke arrived 4 months before Lily’s second birthday, and they are the best of friends. We were understandably nervous throughout the pregnancy, but felt confident that everything would be okay. Lily had already taught us that any child was a blessing who would only make our family happier and more complete.
I view Lily as my guiding light. She has led me to people I would have never met – incredible people who do incredible things. She has taught me to take life a little slower – and that by doing so you get to truly enjoy the journey and rejoice in even the smallest of accomplishments. She has shown me that every life is worth living – and that no part of her or any other individual is imperfect or flawed. She has illustrated bravery, perseverance and strength that rival most adults. And she has shown me that a bright smile can be contagious and can make even the worst day wonderful. Lily teaches me something every day, about myself and about others. I have direction and purpose now that she is here, guiding me to be a better mother, and a better human being.
Someday Lily may ask me if I ever wished she didn’t have Down syndrome, or she may even wish it herself. And I’ll explain that I would never want her to be anyone other than who she is, exactly as God created her. I can tell her that I wanted her always and I consider her one of the greatest gifts I’ve ever received. She is, after all, my answered prayer.
(Mother to Lily born 5/26/03)