“Down's Syndrome is beautiful. All my Down's Syndrome people make the world not go down, if you fight for what is right. Down's Syndrome people show normal people about love, to make a better new world. IT'S JUST ALL ABOUT FRIENDS AND LOVE."

- Ben Smith, adult with Down Syndrome, UK

Dearest friends of Banchitta,

You’re very lucky to have a friend who supports you in this way, it’s truly special. I hope I can provide some support to you both through Banchitta by sharing my experience as someone whose sister has Down Syndrome.

I don’t know where you are in your thought process, or when you first learned your child has Down Syndrome, but the first thing I would say is, if you’ve had moments when you’ve felt sad about your baby having Down Syndrome, that’s ok, that’s normal, my mother experienced that too. Parents have all these expectations and imagined futures about their children’s lives, and something like this can shatter those expectations, and pose a whole knew set of questions about how to love this child and help it reach its potential and fine happiness. This is all normal if you’re experiencing it, sadness, fear, and uncertainty. It’s important to be able to process those feelings with support so you can move past them and be present and loving parents. You’re really lucky, because today, there are more resources than ever before for families with special needs children, more programs for their education, employment, and personal enrichment.

My sister, Jessica, was born in 1984 in Minneapolis, Minnesota. My parents learned she had Down Syndrome moments after she was born. It came as a shock to them, they were not remotely prepared for that news. My mom was upset and I think her head was spinning with thoughts about Jessica’s future and how to properly care for her and meet her needs. Minutes after her birth, after Jessica had been removed from the birthing room (she had been partly choked by the umbilical cord during birth so they rushed to restore her air) and news had spread through the maternity ward in the hospital that a baby had Down Syndrome, someone popped their head in the door and told my parents “sometimes bad things happen to good people”. This is really NOT what you want to hear in that moment, and conceiving of your child as something “bad” happening to you is totally upside down. I can forgive them because they’re trying to be consoling, but it’s coming from a place of ignorance.

I think the first weeks and months were challenging, especially for my mom, because my father doesn't easily process emotional things verbally, but my parents kept moving forward and figuring things out as they went. They started getting different books (which now feel so incredibly out of date) about raising a child with special needs or Down Syndrome. They looked for a specialized pre-school for Jessica and found one. Luckily, both of my parents’ families were loving and supportive of them and Jessica. I was about two years old at the time, and two years later our youngest sister, Nina, would be born.

Having a child with Down Syndrome is a special experience usually filled with empathy, love and innocence, innocence that doesn’t fade. I can say the same about having a sibling with Down Syndrome. The bond is immensely deep, I cannot express this fully.

Jessica is the purest person I know. Her ego just never developed the normal defenses and baggage most people carry. She doesn’t prejudge anyone, she’s open, loving, sensitive, and caring, and always laughing. She loves to cheer people up. She’s a goof ball, and I love being goofy with her.

There’s a spectrum of ‘functioning’ amongst people with Down Syndrome, with varying language skills, intelligence, and emotional maturity. It’s actually quite a wide spectrum, and as I said before, there are more resources than ever to help them reach their potential. Jessica is on the lower functioning side, she has ok language skills, it depends on the moment how articulate she can be, but she’s still much like a child emotionally (maybe 10-11 years in age), and this makes her quite vulnerable, so we care for her full time. Jessica is turning 38 this week. Many other adults with Down Syndrome her age live independently in group homes and really enjoy it. Jess is quite attached to my parents though, she’s a daddy’s girl especially. My parents wouldn’t have it any other way.

When Jessica was 29, she was diagnosed with breast cancer (I met Banchitta a few months after Jessica finished her treatment). Cancer is incredibly rare in people with Down Syndrome, so this was a huge surprise and very unsettling. It was a profound experience for our family, but ultimately one that made us all closer and allowed me to see certain things about Jessica and her role in our family more clearly. Jessica is the sun my family revolves around. She proved to be the strongest and most resilient among us. She had to receive a full mastectomy, and we were concerned about whether or not she grasped everything happening, but she took every step in stride and really seemed to be supporting each of us emotionally along the way. She virtually always remained in good spirits, and the recovery from full mastectomy’s is not pleasant. She then underwent six months of chemo and remained an inspiration to us throughout it.

I'm a photographer, and I decided after Jess’s diagnosis that I would document the whole experience for Jess and my family. It became the most meaningful project I’ve ever worked on. I created a Facebook page for her (Jessica & Life), initially as a way to arrange for Jess to meet Justin Bieber. Nina had arranged to get tickets for the two of them with my parents months before the diagnosis, so it was still a nice surprise for Jess, but we wanted to try to make it extra special, and it worked! We spread the message on Facebook to all our connections, and an old classmate of Jessica’s who worked on a movie with Bieber’s team made the call that day and arranged back stage passes. I tagged along with Nina and Jess for the meet and greet to document it, and we all took a photo with him. Jessica was beaming.

I have a lot more I could say about Jessica and this experience, but it would be too much to write here and now. Below I will share more photos of Jess and provide captions pulled from the Facebook posts in some places (all the images in Jessica & Life are black and white).

https://www.facebook.com/jessicaandlife

I also want to show you a few other Down Syndrome adults I admire, and who really show what is possible these days for DS adults.

The higher-functioning adults with Down Syndrome can achieve a lot these days, attend college, have a job, fall in love, maybe even get married. However, I will say, some of them experience some frustration Jessica doesn’t experience because they’re more aware of how they’re perceived by others without Down Syndrome or their own limitations.

Pablo Pineda is absolutely the most inspiring and well-spoken person with Down Syndrome I’ve seen. He perfectly describes the experience of Down Syndrome people here. I encourage you to watch his other interviews online.

During Jessica’s ordeal with breast cancer, I looked for other families with someone with Down Syndrome to see if they faced the same challenges and joy through difficult experiences. I found Sunny’s blog searching Google, and I was struck by something her brother Ben wrote about Down Syndrome, because it was so true to how I saw Jessica and how I feel she sees the world, but Ben can read and write and express himself more deeply than Jessica. I quoted him at the start of this page, “IT'S JUST ALL ABOUT FRIENDS AND LOVE”, and that’s true for Jessica too.

Another person is Tim Harris from Tim’s Place. Tim had his own restaurant until a few years ago, when he decided to close it and move to another state to marry his girlfriend! Jessica was lucky to visit his restaurant in New Mexico while it was still open. It was a fun experience for her.

There are several more out there, but I don’t want to make this too long. I’m sure you have a lot on your mind. I recommend looking at some of the artists with Down Syndrome out there, there are some incredibly talented ones. Judith Scott did amazing sculpture work. Coloring is a special part of Jessica’s life, so are films and TV shows emotional plot lines. A great part of their lives to nurture and develop.

Be courageous, give love, and you will receive unending love in return. Let me know if you want to talk about anything, or speak to a family member of mine.

All my best,

Justin