People Think I'm Sad About My Daughter's Down Syndrome, So Here's The Truth
Roughly 15 percent of American children have a developmental disability, and since at least 16 million children have been born to millennials, many of those children are being raised by young parents. In Romper's Now You See Us series, six women 35 and under whose children have special needs describe in their own words what it's like to have a child who isn't "typical" and what people don't see or appreciate about their lives.
Celine Robinson, 24, spoke about her 22-month-old daughter, Grace, while she held her younger child, a cooing 3-week-old named Uzuri. When talking with Celine about Grace, it is impossible not to feel the intensity of her maternal love. Every word that Celine says about Grace is spoken with palpable warmth. Grace has Down syndrome — a fact that came as a surprise to Celine and her husband at Grace’s birth.
Celine, who lives in Brooklyn, is now a vocal advocate for changing the stigma that surrounds Down syndrome. She also wants to discuss Grace’s secondary diagnosis — something she has not been open about before. Grace also has an imperforate anus, a condition that occurs when someone is born without an anus. Imperforate anus occurs rarely the general population, but affects around 3 percent of individuals with Down syndrome. Grace’s condition required several corrective surgeries, including one the day after she was born, compounding the stress of Grace’s early life.
Grace is a bubbly, friendly little girl who loves to dance. She loves hugging people. She loves food. I take Grace to music class. I take her to the library. And she plays. She does everything that another child does. Everywhere Grace goes, she gets attention. It is mostly good attention. If someone says "hi" to her, she blows them a kiss. She’s just so sweet. Grace is really popular. Everybody just loves her.
During my pregnancy with Grace I prayed a lot. I prayed about the labor that I wanted to have, the delivery that I wanted to have. I had an image of a little girl in my mind. Almost everything I prayed for I didn’t get, but I got much better, in my opinion. I had a really traumatic labor. When we got to the hospital I was four centimeters, and Grace’s heart rate was dropping with each contraction. Grace actually had to be resuscitated in my womb during the labor. I ended up needing a crash emergency c-section, so I was not able to meet Grace at first.
That day the neonatologist told us that Grace was showing features of Down syndrome. There was no kindness in her voice at all when she told us. And I could not understand how this happened. I did the prenatal blood test, and it was negative. [The prenatal maternal blood test for Down syndrome, called a cell-free fetal DNA test, is not 100 percent accurate and is considered only a screening test, not a diagnostic test.] The neonatologist also said that Grace was born with imperforate anus, meaning she had no anus. The doctor explained that Grace would need surgery the next day to create a colostomy bag so she could pass feces. I couldn’t believe it was happening.
Grace had her colostomy surgery at a day old, and I met her after her surgery. She was intubated. She had a feeding tube in her mouth, and she had the colostomy bag. She was just limp, lifeless in a way. I just thought, "I can't believe this is my life right now." But I felt love still. I felt love for my baby.
Grace has had three surgeries in her life. The first was to place a colostomy bag. The second surgery was called an anoplasty, it was to create an anus. The third surgery is called the "pull through" procedure. During this surgery the surgeon connected Grace's intestines back together allowing her to pass feces normally. The imperforate anus journey, for right now, it’s over, but her scar is there, and I am reminded of what happened each time I look at that scar. Grace has to get a laxative every evening in order for her pass the feces. I know that when potty training starts we may have some issues, but for now, we are doing great. I’ve never really spoken about Grace’s imperforate anus on Instagram and Facebook. I have [spoken about it] in private imperforate anus and Down syndrome support groups. I guess I didn’t share that because of my shame, maybe. It was just a lot. We would be out, and I would be wearing her, and the bag would leak.
And believe it or not, that colostomy bag tested my marriage. I appreciate and love my husband, but that bag made us go crazy. It was like 50 steps to apply this bag, and you want to do it right because if you don’t, feces is going to leak out. We would get angry and we would lash out at each other. Now that she doesn’t have the bag anymore, sometimes Grace has diaper blowouts if I don’t change her quick enough. In some ways, the bag is so much easier! I wanted the bag to be gone so bad. Now I’m like, "Oh my goodness, where is the bag when I need it?”
The Down syndrome diagnosis is a journey in itself. When I received the [news] I was sad because I was extremely ignorant about [the condition]. I actually thought that Down syndrome was caused by incest. I know that sounds foolish. But I had read Push by Sapphire, and the character in that book had a son born with Down syndrome after her dad raped her. So that is why I thought that. I’d never researched it. In the heat of the moment, because of my emotions, I asked the Lord to take her back.
But when I held my daughter it took all that pain away. Unfortunately society has painted Down syndrome as something horrendous. There are people that don’t really expect our family to do much. They don’t expect us to have happy lives because Grace is in our life. We know that. But I feel like what they don’t understand is that we are really, really happy. Grace is not a burden. And there is nothing dumb about this chick. She is awesome.
It is time to get it together. We have people with Down syndrome that are actors and actresses, business owners, and college graduates. People with Down syndrome are really changing what society has embedded in our minds.
Grace was born at a perfect time. I don’t really see anything limiting her. I want Grace to go to school, to college. I want Grace to have a boyfriend. I want her to go to prom. If she wants to get married, she can get married. But I am definitely going to be stalking her.
I don’t know if she’ll ever have children. [According to the National Down Syndrome Society, approximately 50 percent of women with Down syndrome are fertile, and carry a 35-50 percent likelihood of having a child with Down syndrome or other developmental disabilities.] That’s something I think about. I don’t believe that should be taken away from her. Grace's [maternal] instinct kicked in once she observed me [taking care of] her sister, Uzuri. When Uzuri cries she rushes over to help her. Grace has shown that she is caring and loving: The main two skills that make up superb mothering. So what if she has Down syndrome? I needed a lot of help when I was a new mom. My mom was there for me. I don't want to rob Grace of her dreams, so if if she dreams of being a mommy, then I will help Grace, as my mom helped me.
I want her to have her own place. I want her to have her own job. I want independence in her future. I have heard many times that Grace’s cognition is so good. I see that myself as well. But I don’t really care about that. I just care about her, about who she is as a person. For me? I feel like Grace is helping change the stigma around Down syndrome.
I am going to ensure that Grace reaches her highest potential. Her diagnosis is not who she is. She’s Grace. She’s not Down syndrome. Sometimes I don’t even think about her diagnosis. There are times that I may feel a little sad or where I feel like this is becoming a little bit hard. Then she does something — says a word, does a dance, or gives me a kiss — that reminds me to embrace every single moment that I have.
Special needs parents need encouragement. Sometimes it is unfortunate that you don’t really get the encouragement from people that you would expect [to provide] it, but you can find it. If you look for it, there is tons of support for us. For example, we go to the New York City location of Gigi’s Playhouse, an enrichment center for people with Down syndrome. They offer all kinds of programs, like dance classes, tutoring, and summer camp. It has been a blessing to me — being around tons of people you can relate to, you feel at home. Gigi’s Playhouse is kind of like a second home.
I know that there will be parents who may have recently received a diagnosis who read this. I want them to know that this journey is worth it. There are some families that [have thrown themselves] into this life, and they will embrace new moms. They will encourage you. And that is the kind of mom I want to be. I want to encourage people and just let them know you can do this and it is totally worth it.
This account has been condensed and edited. Original photography: Ashley Batz. Art direction: Brit Phillips. Illustrations: Chelsea LaSalle.
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