World Down Syndrome Day  is March 21 of every year. The date, 3/21, represents Trisomy 21, the technical name of Down Syndrome, meaning 3 copies of the 21st chromosome.

This Tuesday will be our first WDSD with the Warrior Princess. We don’t have any big plans for joining any events. Even though New York City is technically close to me (20 minutes) it can be a costly nightmare driving in some days, not to mention finding parking. Also, homegirl is only 3.5 months old. I’m not down to have her on public transportation in this blizzard any moment weather. So while there are WDSD events taking place in NYC, we haven’t been able to find events more local to us here in northern New Jersey. (Maybe I haven’t quite figured out where and how to look for events specific to DS in NJ #StillLearning)

I’m wondering what we will do in the future and how we’ll help her celebrate her extra chrom’ along with everyone else in the world.

This year we will be wearing crazy socks (mismatched pairs) which encourages people to ask you about your socks and you in turn can tell them about WDSD. I’ll be donating to 3/21 Pledge

3/21 Pledge is a program developed by Ruby’s Rainbow, Inc., a 501(c)(3) nonprofit organization dedicated to improving the lives of adults with Down syndrome by helping them achieve their dreams of higher education.

Find more information on World Down Syndrome Day, at WorldDownSyndromeDay.org

Before my Warrior Princess was even born, I knew I needed to get her started with Early Intervention. I had read about it, was told about it and I guess through the grapevine I knew Early Intervention (EI) was what’s up.

There was an evaluation visit where Warrior Princess was deemed qualified for EI with a presumptive diagnosis of Down Syndrome and was recommended physical therapy twice a month, a second visit with the case coordinator (with whom I went to college! Small world ‘eh?) and then her first visit with the physical therapist.

I was so nervous for first visit from the physical therapist. Was the apartment clean enough? Would the dogs bark the whole time? Does she hate dogs? Would she like me?  But would I even like her..? Would she take one look at Warrior Princess and think we needed to buckle down because she was super physically behind?

The first visit I was left with a handful of exercises to do with her and rattle suggestions. Last week was the second visit and I don’t think I’ll ever not feel judged as her mom. There’s nothing to therapist did or said, it’s just…I feel responsible for how well Warrior Princess is or is not doing. I feel admonished if I haven’t really sat her in a position because she doesn’t like it. I feel admonished if the therapist points out where WP is in too much flexion and extension. I feel admonished if WP is over it and would rather sleep through physical therapy. And this makes me feel weak, like I’m not being a good enough or strong enough mom.

I know it’s all in my head but I feel as though her success rests on me to help her be the best Warrior Princess she can be and if I’m slacking, that’s no bueno. If someone else has to point out where I can improve, then it’s been 2 weeks of me not doing right by her? Makes sense? Maybe not. Chalk it up to irrational motherhood I guess.

-Charys

I met my husband as I was turning 31. We had both lived enough to know that we were “the one” for each other (he sooner than I). When the time came for us to begin our family, I was a worried because 1) I had this lifelong fear that I’d be infertile or unable to conceive 2) I have endometriosis and was worried that would cause problems with conception.

After about 6 months of purposeful and timed trying, I went to see the doctor. I had read that after 30 your fertility drops and given my concerns, I figured I should get the ball rolling sooner rather than later. We made a fertility doctor appointment for some time in April and went to Virginia on spring break at the end of March.

I never went to the fertility doctor because I got knocked up while on spring break.

We were elated and I wanted to wait until the end of the first trimester before telling anyone, except I couldn’t wait that long before I told my closest friends and family. My first blood screening went well, it confirmed I was pregnant. Then I had another more in-depth ultrasound and blood screening. That came back with abnormalities stating that I had elevated chances of Trisomy 13 and Trisomy 18. This means that either the 13th or 18th chromosome had an extra copy. Both of these diagnosis were fatal. I went to work distracted and sad. I stopped talking about the pregnancy with my friends. I stopped checking the What to Expect app because, what was the point? I thought how could I have waited my whole life to get pregnant with the perfect guy only to be told that the baby would die? What kind of cruel universe would do this to me? I tried to not be angry with God. I prayed that whatever His will was for our family, that He give me the grace to accept it and the peace to live with it.

I elected to have the Panorama screening, which would be about 99% correct in identifying chromosomal abnormalities.

The wait for the blood test and results were the longest 2 weeks of my life. The doctor called and I remember sitting in the car thinking this is it, this is how my heart breaks. She said that the test confirmed her thoughts.

“So, which is? Trisomy 18 or 13…?”, the music on the radio playing over my sadness.

“No, it’s trisomy 21. It’s Down Syndrome.”

“So it’s not fatal?”

“No, it’s not.”

Hearing that it was Down Syndrome was the best news I had heard since finding out I was pregnant, because it could have been worse. I am always reminded that it could have been worse and I am thankful for the blessing of her life.

It’s just Down Syndrome.

-Charys

It’s not an easy thing to start and keep an active blog, especially a public on (yes, they can be private). So why start (another) one? Well, when I became pregnant I felt that I hadn’t read a lot about how I was feeling. That led me to believe that perhaps there was someone else out there having the same experience. If I were to share my story, then that other person wouldn’t feel so alone.

I’ve also gotten a lot of strength, courage and emotional relief reading what others have shared. If I can be that for even just one other person, I’ll feel I’ll have paid it forward. I guess it’s the helper in me (which made me become a teacher). I want to share it all in the hopes that others can too me strengthened, supported, lifted and relieved. Cuz life can be tough but you don’t have to do it all alone.