This is my buddy Viv. She actually IS as edible as she looks - SO YUMMMMMM - So many rolls. GAHHHHHHH!!!! I WUV her!!!!
Joanna, Viv's mom, quickly became a good friend of mine after the birth of this little lady. We have had many a conversation about parenting, careers, family, and just life in general. Oh, and we also talk a lot about making the world a better place. I love that because of the extra chromosome we were brought together, when it's pretty likely that we may have never met otherwise. It's just one of the magical parts of Down syndrome. It opens you up to a whole new community that you didn't know existed. People who appreciate and respect difference just as you do. Joanna has done a really lovely job for Down Syndrome Awareness Month advocating and educating for those with DS. I am proud to stand with her and can't wait to watch our kids grow together.
Here is what Joanna had to share with us for CDSW...
How was your pregnancy?
My pregnancy with Vivienne was great. Besides some sciatica and carpal tunnel, I felt great and both baby and me were happy and healthy throughout. During one of my routine OB visits, the option to test for genetic disorders was brought up for my next set of scheduled blood work. I rejected this test as both my husband, Jason, and I decided this wasn’t really important to us. Somehow, the blood work was taken anyway and at my next visit, the doctor shared with us that all was well. (We found out after Vivi’s birth that the results showed we had a 1 in 261 chance of having a child with Down syndrome but because the blood work showed my likelihood of having a child with DS was just over the cut off number, the results were negative and that is what the doctor relayed to us). I struggled with this afterwards as in some ways, I would have wanted to have known beforehand to avoid going through the experience I had after she was born.
When did you receive your diagnosis?
I can’t discuss receiving Vivi’s diagnosis without crying, even today. It was a traumatic moment in my life, one that has left a permanent scar and I wish the news had been delivered differently. Vivienne took less than 50 minutes to enter this world – she was on a mission and nothing was going to stop her. She was born at 10:47pm on February 19th and at the time of her birth, everything looked great. Because it was flu season, the hospital was not allowing any visitors to the birthing unit so my husband went home to check on our two-year-old son the day after she was born.
Shortly after he left, a doctor came into my hospital room with a student. He introduced himself and came to look at Vivienne. I was holding my cheeky baby at the time and remember asking him if he wanted her placed in the bassinet, which he did. As I placed her in the bassinet, he glanced her over, looked at me and said, “so you know there are markers of Down syndrome?”. In that moment, it felt like someone literally swiped the rug from under my feet. I thought he was joking at first. I thought, he’s confused – this can’t be happening. My brain was racing a mile a minute and I was going back and forth between whether what he was saying was true or whether this was some horrible dream I was going to wake up from. I started crying immediately. I blurted out a number of questions which he answered matter-of-factly and as quickly as he came in, he was gone. I was left all alone in that room with my baby, and I remember picking her up from that bassinet and telling her I loved her. I loved her just the way she was. Funnily, those were my very first words to her after her birth. But my brain was working overtime and my emotions were everywhere – I started pacing my room, pacing the hallways of the hospital, waiting for my husband to return. I didn’t want to call him to tell him over the phone and I didn’t want to worry him by calling and telling him to get back sooner. When he returned, I remember sharing the news with him and watching him experience the same shock I did just a mere couple hours earlier. It’s hard to recall those moments because we went on a rollercoaster of emotions thereafter…I recall the nurses giving me sleeping pills to knock me out because I couldn’t sleep from the weight of the news delivered to us earlier.
What were some of your initial feelings/thoughts/fears/hopes about having a child with Down syndrome?
It is extremely hard to narrow down our feelings and emotions at the time because both my husband and I were dealing with it in our own way, trying to process this news and yet, be supportive of each other. Trying not to freak out and yet, freaking out all at the same time. The possibility that our baby girl had Down syndrome was a complete shock. I actually had almost no knowledge of what Down syndrome really was…I hadn’t even met anyone with Down syndrome before Vivi. Her life kept flashing before my eyes, almost as if it were being erased. I was afraid – afraid of what the diagnosis meant for her, for her brother, for us as her parents, how it would affect her, her future and our family. As we Googled our daughter’s diagnosis in that hospital room, we were terrified. As we waited for the results of her karyotype (the blood work that tests for Trisomy 21), we kept going back and forth whether we thought she actually had ‘it’. Once it was confirmed, we cried some ugly tears (not to say there weren’t ugly tears before then either). We cried as we grieved the daughter we thought we were going to have. We cried for what we felt she was being cheated out of, what we were being cheated out of. I questioned myself, questioned my responsibility in her diagnosis. How could my body allow this to happen to my baby? I had a lot of anger towards myself. As I was working through these emotions, there was also the thought that I was glad she was mine. I was glad I was her mom because dammit, I loved her from the instant she was placed in my arms and I knew we were going to give her the best life we possibly could. I remember telling my husband that the only way we could look at her diagnosis was that we hit the jackpot. The chances of winning the lottery are slim…and having a child with Down syndrome is also, relatively slim and gosh darnit, we won the lottery and that was that. I quickly realized that I wasn’t prepared to shed any more tears over my sweet Vivienne. I knew I didn’t want to look back at those first few days and only remember me crying. I didn’t want her to feel my tears, my fears, my sadness. I wanted her to know she was wanted and loved. She was here, with us, and she wasn’t going to be different from her older brother. I quickly put aside the ‘dreams’ I had built up in my mind of who my daughter was going to be and decided I was going to let her be her own person and let her show me who she would be.
What has your child with Down syndrome taught you?
What scared me most about Vivi having Down syndrome was the unknown. We didn’t (and still don’t) know what it really means for her or her future. We don’t know how she will develop, when she’ll develop certain milestones or how Down syndrome will affect her overall health. I realized that not knowing is what was most terrifying and it was because I, without meaning to, had created these goals and daydreams of all these things I wanted my daughter to become or to accomplish in her life, when really, those goals or dreams may not have ever even been ones she had for herself. I realized I had done this for each of my children. As I worked through Vivi’s diagnosis, I learned that my children will each have their strengths and weaknesses and I was rather silly for having dreamt up a life for each of them, one they may or may not have ever cared for personally. I realized my job as a mother was to bring these little people into the world, love and care for them and teach them to be kind, loving and respectful people. What they chose to do with their lives would be their decision. In many ways, Vivi’s diagnosis has taught me to let go of my expectations. Anyone who knows me knows I have high standards – of people, of my work, of things in general and while I have high standards for all three of my children, I have learned that what I consider to be success or happiness may not be what they consider it to be and it is not up to me to write their path for them. They will do that themselves and that is what Vivi has taught me (so far).
What is the most wonderful thing about knowing your child with Down syndrome?
It’s almost impossible for me to answer this question because I think everything about Vivi is wonderful. Her eyes, her laugh, the sweet smell of her breath – I could actually eat her up. Her feisty personality – she is a bit of a diva already, highly dramatic at times and oh so animated – I can only imagine what she’ll be like as a teenager (insert eye roll here). To know Vivi is to love her. She’s a charmer and she is able to put a smile on anyone’s face. She’s turned everyone from big, tough looking bikers to little old grannies to butter. Watching her captivate people’s hearts is probably one of the most wonderful things about her.
How has Down syndrome changed you (if at all)?
I believe it has made me a better parent. It has taught me a lot about myself, my strengths and weaknesses and it has changed the way in which I parent for the better.
What do you wish the world knew about people with Down syndrome?
I want the world to know that people with Down syndrome are just people, like anyone else, with their own likes and dislikes, strengths and weaknesses.
What are some of your hopes/dreams for your child with Down syndrome?
My hope for all of my children, not just Vivienne, is that they will be happy and healthy. Above that, my hope is that the world will embrace Vivienne, that the world will see her for who she is and not her medical diagnosis. I hope that she lives a meaningful life, one in which she feels valued and respected. My dream for her is to grow into a kind, loving and successful woman, whatever that will mean to her. I dream of her graduating college and entering the workforce, acquiring a job where she is able to give back to the world but at the same time, I know I have to slow down and realize that I am doing what I have learned not to do – I don’t want to set out her life path for her – she will do so on her own – my only hope is that she’ll keep me around to be there for her when she rocks this world.
What have been good resources for you to learn more about Down syndrome?
Blogs, social media (Facebook and Instagram) and even though I love Google – I avoid Googling Down syndrome at all costs! Our pediatrician has been an excellent resource and Vivienne herself. We are learning as we go. I don’t want a book or a study to tell me what she may or may not be. I’ll let her teach me that.