Trevor’s Story- A Birth Story of Down Syndrome and Love
There are so many stories of moms who first laid eyes on their newborns and saw nothing short of angelic perfection. Later, when they learned of their child’s diagnosis of Down Syndrome they often say they are surprised they didn’t see it right away. Love can blind us to the nuances and physical traits indicative of Down Syndrome. That is exactly the case with Trevor and a birth story of Down Syndrome and Love.
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revor was born on December 14, 2016 at 5:51 a.m. after only four pushes, and we held our breaths, waiting for his first cry. Our little boy was perfect; he breastfed immediately, and since his vitals were fine, he was able to spend an hour doing skin-to-skin before going back to the nursery. I remember looking at him and knowing immediately whose mouth and nose he had. Down syndrome was never on our radar, so when I saw his eyes, it didn’t hit me right away. I just kept thinking to myself whose eyes does he have? I think back now and can’t believe I didn’t see it, but he was our baby boy, and love can make such nuances irrelevant. (Honestly, I still don’t see Down syndrome when I look at Trevor. I see my sweet handsome boy.)
After spending an hour with Trevor, he was taken to the nursery for observation. Jeffrey went home to get some rest and drop Howard off with a friend. I was settled in the room and went to visit our sweet boy. The nurses never said anything about the possibility of Trevor having Ds, for which I will always be thankful, for it is best for the diagnosis to be delivered by your OB or pediatrician, so questions and concerns can be properly addressed. Later, I was in my room waiting for breakfast when Trevor’s pediatrician walked in. It was a few hours after giving birth, and I didn’t think twice about him walking in with a couple nurses. He asked if Jeffrey was around, and I explained he was home. He said he would come back later, but I told him I could tell something was wrong and wanted to know right then. I now know that, ideally, a mother should not be alone when she receives the diagnosis. This was not the doctor’s fault, of course, since he didn’t know before that I was alone, but I wasn’t letting him leave. He asked if there were any concerns during my prenatal checkups and explained Trevor had markers for Ds.
I immediately felt the world crashing down on top of me. I started rambling off comments like “we can’t have any more kids; we will never be able to leave him alone and take vacations; he will always live with us.” I’m so thankful for a pediatrician who is positive. He explained to not worry 
about having more kids until we talk to a geneticist (who could tell us our odds of having another child with Ds) and that Trevor would be able to achieve everything a typical child could achieve. He will be able to get a job, go to school, and even live on his own. After he left, I spent the next couple hours praying and crying. My biggest worry in that moment was how Jeffrey would feel.
After the pediatrician left I went to the nursery to see my Trevor. I was now able to see all the markers the doctor mentioned. I held my precious boy and cried for his future, his brother, and our family. I prayed Jeffrey would not be angry. I worried he would blame me and not love us. I have the most loving and caring husband, but I worried he wouldn’t want a child with Ds. We never opted for genetic testing because we knew it would not make a difference. We also never thought this would happen to us. One of the nurses told me to call Jeffrey. She knew it would all be okay once I told him. I now believe God was encouraging her to nudge me. I was a mess and was praying constantly for peace. I ended up calling Jeffrey and told him to come back early. I knew he was tired, but I needed him there.
As soon as he walked in my room, I started crying again and told him Trevor most likely had Ds. He looked me straight in my eyes and said, “Okay. Everything will be all right.” Once he said that I felt a wave of peace come over me that could only come from above. I thank God daily for answering that prayer and giving me a husband who would be strong when I was weak. We went together to the nursery and spent the next few hours with Trevor discussing how we would tell our family and friends. Our nurse came over and asked how I was feeling. I told her much better, and she just smiled and said she knew having Jeffrey there would make everything better and was what I needed.
The next few days were filled with prayer and waiting. We waited to finally bring Trevor home and start our life as a family of four. He was thankfully only in the nursery for three days, but it felt like eternity. I pray for other families who still have babies in the NICU waiting for them to be healthy enough to go home. We spent the first couple days calling all our family to tell them about Trevor. We never wanted his diagnosis to define him, but we knew we wanted to address it first instead of having people discuss it without our involvement. We stayed as positive as possible in hopes to not hear “I’m sorry” during every phone call. Everyone had a positive outlook and were very supportive. We are so blessed with an amazing extended family.
Looking back I’m so thankful I was alone when I received Trevor’s diagnosis. I don’t like to appear weak to others and this gave me the opportunity to grieve the child I thought I was supposed to have. It is very common to go through the five stages of grief after you receive a Ds (or any disability) diagnosis. I was first in denial hoping the blood test would come back negative. I thought maybe our doctor was wrong. Once I visited Trevor, I knew he wasn’t wrong, and I became angry. I was angry with God and questioned why he would do this to our family. I then became sad and didn’t know what this meant for Trevor or our family. That is when Jeffrey arrived, and I quickly moved on to acceptance. If I was surrounded by family and friends I would not have been able to process these feelings the way I needed.
Just because I have accepted Trevor’s diagnosis doesn’t mean there aren’t days when the diagnosis is hard. I mainly struggle with Trevor’s future and what will happen when he is in school. Unfortunately, kids are mean, and I pray he will be surrounded by inclusive children. I hear too many stories of our kids being bullied and that’s what keeps me up at night.
You might wonder if I would change Trevor if I could. I hate the health problems that come along with Ds, but I would never change him. I believe there are amazing traits within that 3rd copy of the 21st chromosome, and I would not want to live our life without them. I thank God daily for answering my prayer for a healthy pregnancy even if it’s not exactly what I thought a healthy pregnancy meant at that time. I would not change a thing except for the feelings I had in the beginning.
Kristin is a 35 yr old SAHM to two boys, Howard and Trevor. She has been married to her husband, Jeffrey, for 5 years and they currently reside in Wichita Falls, TX. Kristin always wanted to be a mom and has become passionate about advocating for her son, Trevor, who has Down syndrome follow their story on Instagram @kristincrumb
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