2014 has been a hard year. It has been a wonderful year, but I can’t deny that portions of it have been very hard. We rung in 2014 by returning from the hospital with Ellie when she had been inflicted with a respiratory illness. That hospital stay opened my eyes to the seriousness of her heart condition and how crucial our decisions impacted her health. This year we have seen open heart surgery fix Ellie’s heart. We have seen strength in small packages. We have watched Mya grow into a caring and thoughtful big sister well beyond her years. We have come to terms with Ellie’s diagnosis and realized how the words Down Syndrome are a gift and will enrich our future more than we know. We have surpassed anxiety and fear to survive stronger. We have been tested. We have been tested in ways I didn’t perceive. And with hardship comes awakening, with tears comes appreciation. I have grown within myself this year and feel a sense of gratitude for what I have been given, what I have been shown, and for hope and power within my veins that I never knew I had. We are welcoming 2015 with healthy hearts and happy faces, I am ready. With the approaching of a new year we all feel the importance of a fresh start, and a chance to right wrongs, to do things better this time around. I don’t believe in New Year’s resolutions, but this year I am making a promise to myself to work on something, knowledge. I have found a wonderful community online of families impacted by Down Syndrome. Aside from my family and friends, they are a support system I value in so many ways. I am learning so much from these families. But with the good, unfortunately brings light to the negative. I found a wonderful picture online of beautiful girls dressed as princesses, who all happened to have Down Syndrome. I saw this picture and it warmed my heart. The smiles on their faces, the light in their beautiful almond eyes, and as I went to write a comment on the value of this picture, I couldn’t help but notice the previous comments. What I read broke my heart. I will not give more power to these words by repeating them, but the things that people said, I can’t even express how horrible they were. The majority of comments were positive, but the cruelness of the minority far outweighed any positivity I saw. What struck me most was the ignorance. There are people in this world who have no idea of the amazing potential of people with disabilities. They have no idea the love that can come from a person with Down Syndrome. They have no idea that Ellie has been fighting since the day she was born. They have no idea that the moment Travis walks in our door from work, Ellie starts laughing and crawls as fast as she can to give him a hug. They don’t know that Ellie’s laugh is the sweetest sound, that her eyes have a light I have never seen before, that Mya has already learned compassion and acceptance from her younger sister. They see difference, and their ignorance towards this difference makes them type words on a computer, words that hurt people, words that keep people up at night. So I’ve decided, for 2015, that these people need to learn about disabilities. I’ve decided that when I see someone smiling at Ellie, I need to tell them she has Down Syndrome. I’m not going to put a bumper sticker on Ellie, I’m not going to shout Down Syndrome as I’m walking down the street, but I am going to spread knowledge. People need to know, in order for them to forget their fear of disabilities, they need to meet someone who will change their mind. At the urgent care center on Christmas Eve the woman behind us in line was asking why we were there. She was a kind woman, in her mid 70’s most likely. I told her Ellie had a fever and when I usually leave things at that, I decided to say more, and told her I am more concerned because Ellie has Down Syndrome. The woman seemed shocked, said she had no idea. And then she started asking me questions. We sat in line and I told her, how Ellie was born with a heart defect, how an ear infection can be more detrimental for Ellie, how she smiles even when she has a fever, how her eyes have a certain sparkle to them, how she can crawl and feed herself. And the woman smiled at Ellie, and when it was our turn to see the doctor, the woman said she’d pray for Ellie to feel better soon. I admire mother’s who are fighting for advocacy in the media, who are speaking on panels and producing things that are changing the world for people with disabilities, I’m not there, but I can introduce a stranger to Ellie and show that person a little bit of Ellie’s magic. That is what I am working on in 2015. So that maybe that stranger will go home, and spread some information to her son or daughter, or grandchild, and that person will go on the internet and see a picture of beautiful girls dressed in princess dresses who happen to have Down Syndrome, and they will type the word, “beautiful.” I need people not to feel sorry for Ellie or our family, I need them to know Ellie is more than words on a medical chart. So, 2015, I am going out of my comfort zone, because I never want to read hurtful comments like those again, without knowing I did something to change them.
MyaAndEllie on Sisters MyaAndEllie on Happy Birthday Eloise Megan on Happy Birthday Eloise Kerry on Sisters MyaAndEllie on Sisters