There are few “jobs” in this world as difficult — and as rewarding — as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes. 

Through this new series, “Special Edition”, I’m going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something — an extra chromosome, perhaps, or an extra diagnosis; maybe it’s an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their  children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. 

Today’s blog is all about Jennifer, a woman mosaic Down syndrome, ADHD, depression and PTSD. She’s giving us a glimpse into her world.

Hello, I am Jennifer! I am the youngest of three daughters. I live in Manhattan, New York; I am divorced; and I have two amazing daughters. Today, I’m talking about myself. I have Mosaic Down syndrome. I also have combined type ADHD, depression, and PTSD. 

I was diagnosed with Mosaic Down syndrome around age 9, by professionals who work for the National Institute of Health (NIH). I remember the sessions I had with Dr. Martha Denckla… And that was 40 years ago! It seems like a game, but I knew in my young yet gifted mind that it was important; that my present and future would hinge greatly by the outcome.

My sisters… I don’t remember when or how they were told by our parents. My middle sister, Elizabeth, had it hard, defending both her younger sister and her older sister who was born partially deaf.

Being young, I had no idea what the diagnosis of Mosaic Down syndrome meant, but “microcephaly” was in the report. I remember looking it up in the dictionary and that shocked me the most at that time. Knowing that microcephaly meant “small brain”, made things quite difficult for me. My peers and family already knew I was different. I had already been targeted by bullies before then. 

Knowing what Mosaic Down syndrome and combined type ADHD are helped me somewhat as an adult but others/ judgement of me didn’t much change. And that’s because of the misinformation and hurtful articles on the Internet that further spread the misinformation. 

I think the biggest misconceptions are that either of these diagnoses can be cured or eliminated.

My biggest fear is of rejection and abandonment by a loved one and/or friends. But that should be no big surprise because that actually happened several times. 

My entire life has been affected by my diagnoses: everyday stuff, education, employment, behavior… And the reason should be patently obvious! Because of the damage to self-esteem by others, by the bullying, ignorance, and rejection. 

HOWEVER! That being said, I love being a mom. Despite being divorced, I stay in touch with my daughters as often as I can. And see them as often as possible. 

I also love to cook, read, walk my dog, dance around my apartment to music, and be with my boyfriend who makes me feel like a queen and that I am worth every minute of his time and his devotion. I also love working with and for the National Down Syndrome Society, who enabled me to find employment where I feel respected, trusted, and valued. 

When my girls were little I made up silly songs and stories for them, rocked him to sleep, read to them… And just…be mommy. It was, no, IS the best thing ever!  I carried them in me; gave birth to them; I gave of myself willingly and eagerly to raising them with strong character, kind and gentle hearts, and full tummies. Being a mom is the most wonderful thing in the world, and it literally saved my life. 

My greatest wish is to live life as I see fit. To have gainful employment that accommodates my needs at the same time as making the best use of my strengths.  To be afforded the respect to make my own educated decisions. 

And I wish for my daughters to have the same rights as well.

See More Special Editions here!

Please note: We are not medical professionals or scientific experts. We are providing a human-based glimpse into daily life with certain diagnoses. For more information, please seek a professional affiliated with this condition.