It’s officially October. In my mind, October means it’s officially Fall. A month filled with pumpkin spice lattes, cute layered sweaters, and the breakout of booties. But October is also the official Month of Down Syndrome Awareness- something very near and dear to my heart.
It’s near and dear to my heart because of a little girl who has changed my family’s life for the better. Her name is Chaya (Or as I often say, Chay-chay).
Chaya is 10 years old. She is happy and full of life. She gives the best compliments and even better hugs. She loves to help out, loves to go to school and LOVES parties, especially parties that involve groups of people singing “Happy Birthday to Chaya!” People often ask me if Chaya is my sister and while technically she isn’t, she is still very much a part of our family.
Ten years ago, my mother who is a pediatric RN was working in a hospital when she met Chaya. Chaya was a twin sister born into a Hasidic family. Her sister was born perfectly healthy but Chaya was born with Down syndrome and a heart condition. Due to the heart condition, she also had a feeding tube. For reasons I can’t get into, Chaya’s biological parents did not want to raise her. After birthing her, and to this day, her biological mother has never seen her. Chaya’s father did show up occasionally at the hospital to sign paperwork, but that was the extent of his involvement. Chaya has never seen her mom, or her twin sister, or the many other siblings who are being raised by her biological parents. From the moment she was born, the only family she knew was the family made up of hospital personnel. From that first day my mother met Chaya, she fell completely in love with her. This little girl captured her heart and It didn’t take long for her to capture the hearts of my entire family.
An outsider looking into Chaya’s hospital room would have no idea that she was in many ways a child of the state. She had adorable crib sheets, butterflies hanging above her crib, and meticulously labeled clothes that led to perfectly coordinated outfits and matching bows. She looked like a patient whose mom or dad was very involved. Except that the extra care and attention didn’t come from her mom or dad but from her nurse. Even on days that my mom was put on a different assignment, the CNA’s (certified nursing assistants) knew not to get Chaya ready for bed. Because after my moms shift, when she was finally off the clock, she would bathe Chaya, get her into her PJs and play with her before bedtime.
Despite knowing no walls other than those in a hospital, and despite knowing no “family” other than the medical professionals that bustled around the space, Chaya was still filled with laughter, love and pure joy.
Early on, my dad, brothers and me visited my mom at the hospital. We went there to meet all of the kids that my mom spoke so fondly of. But we especially visited so that we could see Chaya. We thought that perhaps one day we could adopt her. An idea that was very much a dream. An impossible one of course, given that her biological parents refused to give up their parental rights. This is still a reality that I have trouble accepting. How can a system be so broken, that a parent can choose to permanently give a child up and also deprive them of the ability to be adopted.
It would be difficult to explain the situation without mentioning the complete isolation of the Hasidic community in the area close to where we live. They have their own schools, own stores, own restaurants, own rules and they very much operate separate and apart from the rest of society. After heart surgery, and slow but steady process of removing the feeding tube and teaching Chaya to eat, she was 3.5 years old and was medically cleared to leave the hospital. But she had no place to call home. She wasn’t adoptable, her parents were not going to take her, and she wasn’t yet “in the system” due to her parents efforts to handle the matter among their own community.
After months of explaining to Chaya’s father that she could no longer stay in the hospital because she was perfectly fit to go home, a young Hasidic woman who worked in the hospital had an idea. This young woman knew a family that was also Hasidic and would likely be open to fostering Chaya. It would allow Chaya’s father to still control her upbringing without having to actually bring her up himself. He of course agreed to this, satisfied that the matter would be handled within his community and the foster family that the hospital employee had in mind agreed. At the time, this arrangement irked us all, but over time, and with the happiness with which this story progresses, we have made peace with the arrangement. However, when the arrangement was first made, we knew it was a matter of time until Chaya was removed from the hospital and living among her new community. Our biggest fear was that we would never see her again.
But there are good people in this world. And Chaya’s foster mom is one of them. We are incredibly lucky that Chaya’s foster family lives just 10 minutes from my parents home. Even luckier for us is that Chaya’s foster mom is a down right good woman. She has several biological kids and she has truly become an advocate for Chaya. She has pushed and argued and spent hours on the phone to ensure that Chaya receives all of the services and benefits afforded to her. She doesn’t treat Chaya as though she is less than capable and pushes her in a way that has allowed Chaya to gain quite a bit of independence. It is because of her advocacy, that Chaya has made tremendous strides and we are so grateful for that.
But what we are most grateful for is the way she has nurtured and encouraged Chaya’s relationship with us. For the last 6.5 years while Chaya has been in her foster home, we get to pick her up every Sunday so that she can spend the day with us. She spends almost all Catholic holidays with us and we often care for her on days when her foster mother needs an extra hand because of a trip or other family obligation. We have slumber parties, we wear matching Christmas Jammie’s, we go shopping, we cook and we throw her birthday parties. She is very much an integral part of our family.
One of the most incredible aspects of this uncommon arrangement, is that throughout the years, my mom and Chaya’s foster mom have also developed a beautiful friendship. Their family came over to take pictures with me on my wedding day and my mom attends the weddings of all of her children. When you look at both Chaya’s foster mom and my mom, you may wonder how two seemingly very different people can become such good friends. But behind the clothing and the religious beliefs, are two women who at their core, are actually quite similar. They both put their family above anything else. They are unrelenting advocates for their children. They are patient and believe in loyalty and kindness. And they both love Chaya deeply.
Over the years I’ve been out with Chaya at a store or a park, and I see people look at us. Sometimes we are on the receiving end of an encouraging smile. But more often than not, the looks we receive are looks of sympathy and sometimes even pity. These people are not trying to be rude or condescending. These people are unfamiliar. Rather than having faith in the unknown, people often fear the unknown. What many people don’t know is that Chaya is not a “kid with Down syndrome.” She is a kid. She is an individual with likes and dislikes and hopes and dreams. Down syndrome is only a fraction of who she is. She has a smile that lights up the room and she touches the heart of every person she meets. The extra chromosome does not define her. It is a part of who she is, but will not determine what she will do when she grows up.
People often comment on how much we have taught Chaya. but the real teacher here is Chaya. She has taught us about patience, perseverance and forgiveness. People always tell us how lucky Chaya is to have us. But the truth is that we are the lucky ones. We have been given the good fortune to share in Chaya’s life...to encourage her as she grows and to celebrate her achievements. We look forward to loving her and cheering her on in the years to come while at the same time spreading awareness. If we can work towards the goal of acceptance and inclusivity, people will quickly realize that truly, there is nothing down about Down syndrome.