When I first received the news that Gelli had Down Syndrome I cried. A lot. But then like many other women I know who are given devastating (or what I thought was devastating at the time) news, I needed to get as much information together as possible for when I would be ready to digest and read it.
So in between my trips to the PICU at St. Luke’s Global, while the big kids were sleeping, after lunches were packed, and while I was pumping breast milk, I scoured the internet for books I could order that would help me understand the new situation I was in.
I went online and ordered a mix of memoirs and textbooks. I asked my sister Nicole to bring them all because she had already bought a ticket for when Gelli was a couple of months old. My sissy wanted to give me time to breathe and settle in before she would welcome her new niece into this world, and I was grateful for that. I needed her near, but I also wanted time to digest and prepare for the journey Nino and I had ahead of us. I stayed up all hours of the night, surviving on only a few hours of sleep, because I was reading blogs and websites on special needs parenting. I don’t know how I did it…very little sleep…very little appetite to eat. Actually, if I think about it, I was almost zombie like…going through the motions, doing everything I could in my power to stay the course and while managing what I needed to do for all of my big children as well.
My friend Kaye told me to pump every two hours to ensure that my daughter would have enough milk when she was ready to feed. I did exactly that. I pumped and froze my precious colostrum that I would later, do my best to try and feed my daughter once she was allowed to eat after her surgery to correct duodenal atresia.
When it came time to nurse my daughter, I asked my friend Abbie for help. She was the best breastfeeding consultant I knew. She stayed with me for days, helped Gelli latch properly and eased this worrying mother’s fears. I felt like a first time mom again. I was so unsure of everything I knew…everything that I knew worked with the three big kids was now useless to me…
When Gellibean was first born, I wanted thirsty for information, so I scoured the internet for what I could find. I also wanted to have as many books as I could get my hands on for anything related to Down Syndrome. I felt so disconnected with the world, with my friends who all had typical kids, and even with my God. I needed to connect with someone or something which would help me process what I was feeling, and if that was through a memoir, an email, or a blog highlighting another woman’s story, another mother’s story, then I knew I would be pick something up to help me get through.
More than three years later, I’m still here, raising three typical kids and one very special little girl who teaches me more than she realizes. It is because of her that I got into blogging. It is because of her that I have met mommas like me in cyberspace, and even in person in real life. Through social media I have connected with Americans, Australians and even British Mums, all with kids who have designer genes…all moms like me, trying to do the best they can.
Last year, one of the bloggers I follow (because she has not one, but two kids with T-21) was asking some of her readers if they would like to help her promote the publishing of her memoir. All we had to do was read her book and give an honest and timely review of what we read. Simple, right?
Well, honest is easy for me…it’s the only way I know how to do things. Timely? On that part I am greatly sorry for having waited this long to tell you about her book. I should have published this piece back in October.
Sun Shine Down by Gillian Marchenko is not just another memoir for me.
I have read other memoirs before of mothers who gave birth and were surprised by their child’s diagnosis of Trisomy 21, but I was drawn to Gillian’s story even more because I felt that I could really relate to her story.
Gillian Marchenko gave birth to her third daughter in Kiev. She was not prepared for the quick entry and delicate condition her daughter when she came into this world, nor did she suspect that Polly would have an extra chromosome. In the first few pages of her memoir, Gillian explains this relationship she had with her doctor, the nurses, and the hospital and I couldn’t help but think it felt a little familiar for me…an American who was used to the way doctors do things back home, adjusting to the way things were being done in the Ukraine, just as I had to adjust to the way things are done here in the Philippines.
Even the way the nurses handled her and her questions when she finally came out of the emergency surgery. As soon as she woke up from the anesthesia, her first question was to inquire where her baby was…and the nurses did not answer her questions about her baby, rather they said her husband would explain when he saw her. Similarly, when I began asking for my daughter after she was born, the nurses told me the doctor would talk to me in a little while.
Our stories are not completely parallel, but as I read on I really felt as if I could relate to her situation (which is what we do when we read memoirs) of feeling so foreign, and even lost in that initial haze of the news where your baby needs immediate attention for her to survive.
When Gillian heard the words “Down Syndrome,” again…my reaction was similar to hers…I drifted in and out of the room like she did wondering if it was something I did to deserve a baby with special needs…calling on memories…and even thinking in a flash forward of how my baby’s life would be in the future…
But at some point our stories diverge.
Gillian’s memoir is raw. It’s real. It’s a detailed account of a mother who gave birth in a foreign country and wanted to go home to make her “new normal” easier to deal with. (I too, wanted to go home to NY where I knew what I could expect for my daughter in terms of early intervention and therapy, and school.) She began to numb her pain, and for most of her daughter’s first year of her life she struggled with depression.
Gillian shares the most vulnerable parts of herself, parts of herself that many people are afraid to even admit exist. She grieved the daughter she thought she was going to have, and struggled with raising the daughter(s) she was given. She manages to pull it all together, with help from her support network, her higher power, a new sense of purpose, and the constant that is her husband.
She shares what it means to really accept the life you have been given and turn it around to be the life that she claims. She doesn’t candy coat her story, rather she opens it up for everyone to see, read, and relate to, without fear of judgement. We live in societies where weakness or self-doubt is not embraced and yet she learns so much coming from that place of darkness where fear and depression reside.
Near the end of the book, she shares how ashamed she felt for feeling sorry for herself, and her daughter with an extra chromosome, and the idea that they were now a special needs family because she made a new friend. She speaks with and eventually meets a mom who lost her son with Down Syndrome because he had so many healthy problems. And it’s at that point where you can see everything slowly becoming clearer for Gillian.
I think what I learned most from Gillian’s memoir, is that even in our darkest hour, we are given an opportunity to grow through it. I know that every mother has a certain amount of guilt we carry around with us…for any number of reasons…if we are lucky, we can hope for that point in our lives where we can forgive ourselves for our own misgivings and alleviate our own guilt by embracing our flaws and failures.
Gillian does just that…she does it simply, by sharing her story with all of us.
Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down, a memoir, published with T. S. Poetry Press in the fall of 2013.
She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record.
Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.