That is probably the question I have heard the most in the last five years. Every time I get asked that question, I have the same general answer: “She is doing okay, but the doctors still have not figured out _____.” I shock myself with how many medical terms I now understand without ever having gone to medical school, and I am only 15!
Faith Victoria Smith was born on December 23, 2008. I was so excited to have a second sister — now it matched my two brothers! She is the best Christmas present I have ever received, but she is also the most challenging one. Faith was born with a genetic disorder called Trisomy 18, which means that she has an extra 18th chromosome. Her disorder is similar to Trisomy 21 which is known as Downs Syndrome. But Edwards Syndrome / Trisomy 18 is much harsher.
Faith is my miracle. From the very beginning, she has fought for her life, and my parents have fought for hers, but what people oftentimes forget is that I have fought with her. When she was around the age of two, she started having major issues that required months and months in the hospital. My mom and dad took turns staying with her at all hours, but I was there too — sitting in those horrid hospital chairs watching my sister fight for life. When we were not allowed to see her for over a month, as she was in the PICU and no one under 16 was allowed in, I was the one staying at home trying to keep our house and my siblings from falling apart. People were very gracious and brought us so much food we had to start freezing it! But whenever anyone came over, they asked the same question, “How is Faith doing?”
I understood, because I would ask the same thing. Yet the question that I was never asked is, “How are you doing?” I am not trying to sound jealous or like I deserve all the attention, but it would have been nice to have been asked. The truth is that I was not doing well. I was watching my sister struggle to even breathe. I was trying to be strong for my mom who already felt bad about not being with us. I was trying to stay strong for my sister who would cry herself to sleep every night listening to a recording of my mom reading her a book. I was trying to stay strong for my brothers who did not know what to do, but in reality I did not know what to do. None of us did.
Thankfully, we all made it. What a happy and joyous day when Faith came home! But our troubles were — and still — are far from over. Even still, Faith has grown into the cutest little girl you will ever see, though I know I am biased! She has feeding problems, breathing issues, and can barely see a thing. Yet, she is loved, cared for, and part of a crazy, loud, and happy family.
Our family was sitting at an event in a row of chairs, with my parents and Faith at the end. A man walked down our row to my mom and asked if Faith would like a piece of candy. He showed her a handful of different “fun size” candies. My mom graciously declined the offer since Faith cannot eat food through her mouth. The man walked past the rest of us kids without offering any. I know that it does not seem like a big deal, but it was to us kids. We were hurt that someone could walk past us like that without giving us a second thought. We were invisible. There have been so many instances where we were ignored because all the attention was on Faith. My sister, Hope, was once standing next to Faith. A woman came up and told Faith for 15 minutes how pretty and cute she was. She never said a word to Hope about how pretty she was, and Hope is a real cutie! Special needs siblings are invisible at times.
Yet I would not trade Faith for the world! No matter how much people ignore me or forget about me, I would not give her up for anything. In fact, I would take her pain from her in a second so she could be free to run, dance, and play. I do not know why God blessed me with her. I am far from deserving of her, but I am so grateful to God that I can be her big sister! It is such a joy to watch her grow and thrive, contrary to the belief of what the world says. I think most special needs siblings would agree with me when I say that God sent us our special needs siblings to bring our families closer together. I have grown so much more in the past 5 years with Faith than I could have ever grown in my whole lifetime without her. She is by far the best thing that God has given me, and I am so excited to see what God does with my Faith!
Although my family has always been pro-life, I came to realize that we as Christians must do more than say we are pro-life. We need to be pro-life. Doctors told my parents three times in a half-hour to abort my sister. Last year, I felt God lay on my heart to start a pro-life group with my good friend Crissy. We landed on the name Operation Abolish Abortion. We have taken criticism for the name we chose, but we have chosen to keep it because we think God gave it to us. I believe abortion should be abolished. 90% of kids that have what Faith has are killed without ever having a chance at life. And their siblings are affected by the decision of abortion without anyone ever knowing it. They will never have the same compassion for people that they might have had if that child had been born. They will never experience the hardships and great joys that would have shaped their lives for the better. They will never know their brother or sister. I truly feel sorry for those who have not had a special needs sibling, because they would have only been blessed.
In the end, this is how special needs siblings could be handled better: Do ask us about our brother or sister. We are proud of them and want you to know all about them, but ask us about how we are. See if there is anything you could do. I know the thing that has helped me best was trying to keep life as normal as possible because this is the new normal. I also enjoyed getting together with friends while Faith was in the hospital. It helped me to cope. What I want you to take away from this is to never forget the brothers and sisters of disabled kids. They are having a harder time than you think they are. They are hoping and praying that their sibling lives. So hope and pray with them. Encourage them. Love them.
Grace Smith, 15, is homeschooled in Michigan, and is the co-founder of Operation Abolish Abortion. https://www.facebook.com/operationabolishabortion Her parents Brad and Jesi Smith are pro-life speakers with Save The 1 — http://www.savethe1.com/?page_id=1233 Read more about their family’s journey to save Faith and to successfully pass their Good Faith Medical Act in Michigan.
