Nicole DiGiacomo

@nicole-digiacomo | contributor
Nicole is a 28-year-old mom to the coolest kid around, Oliver, who just so happens to have Down syndrome. She loves to write, talk way too much and hang out with her homie with an extra chromie as much as possible. She has accomplished many things in life, but the best one by far has been to become Oliver’s advocate and be able to give her son a voice.

Why I'm Thankful for Down Syndrome

If you had asked me four years ago what I was thankful for that Thanksgiving, Down syndrome would have been at the bottom of my list. To be honest, it wouldn’t have been on the list at all. I was a first-time mom, eight months pregnant with a newly diagnosed son with Down syndrome. I was grieving the child I thought I would have and reeling with the idea of being someone who would forever be labeled as a “special needs” parent. I thought I would never be an empty nester and always worry about things parents with “typical” children simply wouldn’t understand. I already had no idea what I was doing as a first-time parent and now I was in completely unknown territory. Four years ago, I would have never put Down syndrome on my list of things I was thankful for, but this year it’s the thing I am thankful for most. 1. I am thankful for all that Down syndrome has done for me. Being thankful for a disability might seem odd to some, but without it I would not be the person I am today. I wouldn’t have the amazing son I have, the life that I lead or all the things I have to look forward to. I look at my son and am genuinely thankful that he is exactly who he is. I am thankful for that 47th chromosome. Before Oliver, I didn’t know how to stand up for myself, let alone another person. Down syndrome taught me how to do that. I am stronger today than I ever thought was possible. I have learned to not only fight for my son, but all those who cannot fight for themselves. Down syndrome has given me a life of fulfillment, a life where I am making a difference, a life where Oliver and I can and change the world. 2. I am thankful Down syndrome has taught me patience. I was not a patient person until Oliver. He has taught me to go with the flow of life, enjoy each moment for what it is and expect things to fall into place when it is their time. I have learned that it’ll take a little extra time to get there, but when we get there, it will feel like we’ve conquered Everest. I got to experience my son as a baby longer, hold him longer, feed him longer, he needed me just that much longer and I am so fortunate to have gotten those extra moments. I’ve heard other parents say they blink, and their child doesn’t need them anymore. Well, how fortunate am I that my son needs me a little longer. We always worry when our “homies with extra chromies” will accomplish the tasks their peers have so easily dominated. We wonder if their day will ever come. But the worrying is for naught, and their day will come, and you will celebrate harder than you ever have before. I was worried for so long that my son would never walk. Month after month ticked by, it was impossible to not feel discouraged. But one day he walked just as simply as he crawled before that — and just as easy as he runs now. I got to watch his determination, his will power, his strength. I got to witness the pure joy in his eyes when he took his first steps knowing it was years in the making. I was lucky enough to be there for that. He is still nonverbal, and I am anxiously waiting for the day I get to witness him talk. It is no longer a worry of if but an exciting countdown of when. 3. I am thankful that Down syndrome taught me what unconditional love truly is. I am thankful I have a son so full of kindness and love that every single person he touches can feel it. I am thankful that it has opened my eyes to a world unlike any other, a community stronger than any other, to a family I never knew I needed until they welcomed me with open arms. Down syndrome has given me lifelong friends, has given me the privilege to watch amazing children accomplish the impossible, to educate others and change their perspective for the better. It has challenged what I thought I knew and forced me to become a better person. It has taught me to not judge a book by its cover, to never count someone out, to believe in myself and others when the world says it can’t be done. It has taught me to push my limits of what I thought I could handle and to always, always keep fighting for what I feel is right. Some might wonder how you can be thankful for a disability, to be so happy about something so many would choose to eliminate completely, how I could love the disability that sometimes makes my son struggle. But there is beauty and success in the struggle, there is  so much light in the darkness. I started this journey scared and discouraged, thinking that Down syndrome was something we were stuck with, instead of seeing it as the privilege it is. I wouldn’t change a single hair on my son’s head or a chromosome in is body. This year I am thankful for the journey, no matter how slow it may be. This year I am thankful for Down syndrome.

Ellen Stumbo

Tattoos of Parents of Kids With Down Syndrome

I have wanted to get a tattoo in honor of my daughter who has Down syndrome for several years. I like the Down syndrome butterfly, which has become a “symbol” of Down syndrome awareness in recent years. To me, it symbolizes the beauty of people with Down syndrome with the yellow and blue awareness colors. I figure this way I could get a butterfly for each one of my kids. We reached out to parents from our Mighty community who have kids with Down syndrome and asked them to share their tattoos in honor of their kids. I thought I was sold on the butterfly, but seriously, some of these tattoos are incredible. If you are considering a tattoo, these might provide some creative ideas. 1. “This is for my daughter. It’s from the Shel Silverstein poem ‘Listen to the Mustn’ts.’ My husband was reading poems to her shortly after she was born and we both thought this poem summed up our philosophy for raising her. People will say what they will but don’t let it hold you back.” — Jennifer B. 2. “My son Luka born with Down syndrome on 9/14/12. Down syndrome is three copies of your 21st chromosome, or Trisomy 21. ‘Omne trium perfection’ means all things that come in threes are perfect.” — George K. 3. “Two words they wished ours after your birth, two words that portrayed a false image of your worth, in my eyes you will always be the most wonderful gift ever given to me.” — David M. 4. “This is the sign for ‘I love you’ with the Down syndrome ribbon inset a heart and an EKG line through it to for my heart hero. I call it my ‘I love you, Augie’ tattoo.” — Melissa S. 5. “The ribbon is after his name because he is so much more than Down Syndrome. On my right arm because I do everything right handed and he is everything to me.” — Stephanie M. 6. “This is for my daughter. I had it to raise awareness and a lot of people have asked what trisomy 21 is.” — Paul W. 7. “Half the heart for CHD and the other half is the DS ribbon.” — Ashley R. 8. “For my son, my anchor, my ‘sonshine’ and now my angel, Greyson Isaac: 10/20/14 — 1/29/17” — Greyson I. 9. “My tattoo for my daughter. Translates to ‘everything that comes in threes is perfect!’” — Haley B. 10. “For my Cree man. Because I wouldn’t want him any other way!” — Angel W. “And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of realty I’d find you and I’d choose you.” 11. “For our son with Down syndrome and our daughter.” — Kelcy G. 12. “Me and my sister got matching tattoos to honor my daughter, Destiny.” — Jeannette C. 13. “Mine for my daughter, Andilyn.” — Kris B. 14. “For our Mihail — the most amazing thing that has ever happened to us. Hubbys tattoo.” — Karin K. “Trisomy 21” 15. “For my girl, Cori, who rocks T21 as well as being a heart warrior.” — Jamie D. 16. “My husband, Robbie” — Amber F. “This is my son, [Robbie]. He is an amazing dad. When he got this tat, I asked him why he felt like he should get this and why so big (like moms do), Robbie said, ‘because when people look at my son, they see Down syndrome, now that’s what they see when they look at me as well.’” — Missy M. 17. “John Isaac’s karyotype of his 21st chromosome.” — Lara S. 18. “This is for my daughter Caitlin, who is 17.” — Lisa M. 19. “For my son. I liked the twisted halo because it’s not as common as the ribbon.” — Samm G. 20. “For our Jaxon, our little superhero.” — Saun S. 21. “Not a parent but a proud uncle.” — Timothy F. 22. “For my little girl with Down syndrome.” — Ashley C. “And though she be but little, she is fierce.” 23. “My daughter and I got this for my son.” — Jodie O. 24. “His initials, LAW are in the swirls.” — Kari W. 25. “For my daughter.” — Jason C. 26. “Fearfully and wonderfully made.” — Erin S. “Psalm 139” 27. “For my son!” — Jamie H. 28. “My son’s father.” — Samantha S. Thank you to all the parents who shared their body art with us. Do you have any tattoos to honor your child with Down syndrome? Let us know in the comments.

What If the World Got to Decide if My Son Was Worthy of Living

Last night was a night I was not prepared for. Last night, thousands and thousands of eyes were intimately undressing me. Removing layer upon layer, seeing the parts of me I don’t so carelessly show, taking in each and every private detail, and once I was fully exposed, they informed me they did not like what they saw. Last night the world at large discussed if my son, Oliver, was worthy of life. Yes, you read that correctly. People all over the world opened their smart phones, logged onto their tablets, got on their desktops and climbed their high horses to give their unwarranted two cents about a segment on “60 Minutes Australia” that discussed a test that could eliminate Down syndrome. Strangers calling me cruel for bringing Oliver into this world, comparing Down syndrome to rectal cancer, wishing for a world where my son does not exist. I spend most of my days telling other parents and loved ones of people with Down syndrome to speak up and be strong. Last night I was not strong. Last night I was weak. Last night I held my child with tears running down my face. Last night I walked away from social media in fear of what I would read. Instead, I spent the night cuddling what I see as sheer perfection questioning the world we live in and wondering how so many people are so uneducated about what it means to have Down syndrome. How in Australia nine out of 10 women chose to abort? Why? It all starts with what happens after the prenatal test is given. I chose to be tested when I found out I was at risk for having a baby with Down syndrome, not for termination, but preparation. Let me be clear, I will never tell a woman what to do with her body, but what these women, these parents, are being told in these cold, quiet doctors’ offices is close to forcing them to chose termination.   We are living in a world where prenatal Down syndrome diagnoses go hand in hand with a list of the closest abortion clinics. They tell mothers-to-be that if they keep their child, their lives will be ruined. They tell couples their marriages will be destroyed. This stigma has to end. The fear has to stop. We need to educate what life really will be like. Some of us have children who don’t have heart problems or stomach issues. Delays could be minimal. They will go to regular school. This idea that we can stop the difficulty of raising a child with a disability before they are even born is asinine. Children are born with unexpected issues every day, there are accidents all the time, do we eliminate those children too? What happens when there are prenatal tests for autism, cystic fibrosis, cancer risks? For those out there whose children developed illnesses and disabilities after they were born, are your children less worthy of life to you? Would you have “eliminated the risk” from the get go? Yesterday my son walked by my side through the beautiful streets of a downtown square. We had coffee and breakfast outside with friends; we went to a car show and played. When we got home he fed himself dinner and then went outside and played with his grandparents. We cuddled before bed, he gave me kisses and hugs goodnight. If this is what people want to eradicate, I feel so sad for them. Sad they will live without experiencing the joy and love and happiness that comes with a child like mine. Oliver has made me a better person; he has made me stronger, more open-minded. He has taught me to live each day to the fullest, to never regret, to speak my mind. To never have had the experiences Oliver has given me would be such a loss. Science is science, they see numbers, they see results and I applauded the researches who are working to better the world, but the approach of this test is not bettering our world. It is creating fear. It is creating uneducated, biased opinions based on old world doctors harshly shoving diagnoses at scared mothers. Science is cold. It’s numbers and data. Numbers and data do not begin to describe my Oliver. Let women have the choice, give them the option of this test, and let them make their own decisions. But instead of fear give them hope. Instead of a death sentence show them what life will really be like. Let them speak to parents who have been where they are. Let them speak to adults with Down syndrome. Show them the kids who are driving, and going to school, and walking the runway at New York fashion week. The business owners, the creators, the people who are changing our world for the better, and all of them rocking that extra chromosome. We want to hear your story. Become a Mighty contributor here .

What It's Really Like Having a 2 1/2-Year-Old With Down Syndrome

My son is 2 1/2 years old. By the end of the day I am exhausted, worn out, pooped if you will. My son has Down syndrome. He has “special needs.” You might be thinking, “Wow, dealing with all those ‘special needs’ must wear you out, run you down.” Or, “I don’t know how you do it. I couldn’t handle it. You’re a superhero. God chose you for a reason.” And every night when it’s time for me to crawl into bed I am thoroughly exhausted. But I’m not a superhero. And God didn’t have some “special” plan for me. I’m exhausted because I’m the mom of a 2 1/2- year-old little boy. I’m the mom of an every day, totally typical ball of chaos. I’m the mom of a toddler. I’m exhausted because he just learned how to climb and that’s all he wants to do. I’m worn out because he loves making messes. I’m tired because we spend hours dancing and screaming and playing and racing cars and singing songs. By the end of the night I’m pooped because he didn’t want to get out of the bath and 20 minutes later the water has gone cold and each of his perfect little fingers and toes are wrinkled and I’m behind on my chores because I couldn’t help myself but watch him laugh and explore and play.   Oliver is an early bird. When he wakes up, he wakes up fast and hard, and he’s ready to take on the day. When he wakes up, there’s barely enough time for coffee before the terrible 2s commence. So we get up and have breakfast. We watch “The Secret Life of Pets” at least once and we will probably watch it again before the day is over. We get dressed and we run errands. He helps with the laundry by unfolding every piece I’ve just completed. We do all the hand gestures to the itsy-bitsy spider about 30 times in a row. Sometimes he just likes to walk back and forth across the room and laugh to himself because he finally figured out how to move his legs in an upright position. He’s a daredevil, he’s messy, he’s a goofball, he’s a kid. He isn’t challenging or exhausting or a steep mountain to overcome because of Down syndrome — he is all those things despite it. On Mondays our friend Michael comes and does physical therapy with us for one hour, and on Wednesdays our friend Florence comes and does speech therapy with us for one hour. We see the doctor regularly. Sometimes a little more than average. But most of our days are filled with laughter and messes and Oliver constantly trying to cheat death by falling off of things. I clean up the same toys at least 17 times a day. My most used phrase is, “don’t touch that.” I’m not a superhero. I wasn’t chosen for anything “special.” There was no set path that God planned for me because I am a stronger person than the next. I’m just a mom raising a toddler, trying to keep him fed and clothed and maybe teach him some things along the way. We want to hear your story. Become a Mighty contributor here .

The Day of My Child’s Down Syndrome Diagnosis

I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning. I was at work; it had been days since they drew the blood from my arm that would change the course of my future. I remember being so mad tests like that took so long. With the way technology has advanced, why hasn’t blood work gotten any faster? It was just a normal day. My belly had started getting in the way when I tried to do things. We knew he was a boy and his name would be Oliver. What we didn’t know was just how much that day would change us. I could hear the vibration of my phone on the counter. I looked down at the number; I knew it was the doctor. I answered the phone, and it was a nurse telling me the doctor needed to speak to me — and I already knew. If it were good news, the nurse would probably have just told me. I could feel the hot tingles of adrenaline coursing through me, a sick feeling coating my stomach, but this time it wasn’t morning sickness — this was something else. Something life-altering, the end of the path I once knew. After what felt like hours on hold, he finally was on the other end. “I can’t believe I am telling you this, but the result is positive.” The doctor had tried to convince me not to do the blood test; he said I was too young, and one small, shiny spot on an ultrasound said nothing. He thought it would be a waste of time. I stopped really listening after that. There was something about an amnio and more apologies. I couldn’t even think. I just knew I had to run, I had to get out. I couldn’t breath. My boss could see it all over my face and he told me to go. I ran out the door, collapsed into the car and called my husband Joe. I’m not even sure he could understand me through my sobs. I finally got the words out: “The test was positive.” He was calm, like he would be for the next few weeks — my rock, my positivity that always finds its way through the darkness. During the 45 minutes I drove to get home, I did something I’ve never done before. I begged God to make it not true. I sobbed, “Please God, not my baby. Not my son.” I wish I could go back, be in that car with myself, and explain how unnecessary my fear was. There was no need to beg God for anything. I got home to open arms from Joe, and we told my mom the news. She took a deep breath and said, “OK.” It’s like she already knew — knew it didn’t matter, that he was exactly who he was supposed to be. She left Joe and me alone while I sobbed. He just held me and let me cry. I’ve never cried harder than I did that day. We hadn’t even had the amino done, but somewhere in the depths of fear and confusion, I already knew the truth. No matter how hard I denied it. No matter how many articles I read, calculating the numbers over and over again as to what percentage of a chance it would be a false positive. But the results came back, and we all know how that story ends. One night after we knew it was real, we were sitting on our bed and I told Joe I didn’t want this life, that I wasn’t the kind of person who could handle it. And he just sat there and let me talk. He listened, kissed my belly and told me it would all be OK. I wish I could go back and be on that bed with myself to explain there would be nothing to be afraid of. That I could absolutely do this. That I was, and am, “that kind of person.” That I can handle so much more than I ever thought I could. That I would become an advocate for my child. That this diagnosis would change me in ways I never expected. That I am a better person for it. Days turned into weeks, tears turned into preparation, sadness turned back into excitement. But it was always there in the back of my mind. Will he go to college? Get married? Have kids? Will he get made fun of? I still have these questions, but I have realized something. Every parent asks themselves these questions. None of us know what our children’s futures will look like or who they will grow up to be. So here I am now, approaching my son’s second birthday, and I write this letter to you, past self, and I write this letter for every parent who has gotten this diagnosis. I write to tell you the real story — what really happens after you get a Down syndrome diagnosis. I wake up every morning to the biggest, bluest eyes I have ever seen. I wake up to my best friend. He’s tiny and loud and hilarious. He makes me laugh until I cry, and cry until I laugh. We get up and play and eat breakfast and watch his favorite shows. We run errands together and visit our friends and family. I tell him about my day, and he greets me with kisses after work. When the stars come out, we snuggle and watch “Bloop and Loop,” and I trace the outline of the most beautiful face I have ever seen. I get the honor of watching him learn and grow and understand when things are funny, and laugh until he falls over. I get to watch him learn to crawl and stand and walk and applaud himself when he realizes he got it right. And I get to love — love more than I ever thought was possible. I wish more than anything I could give you this letter, past self. I wish I could tell you not to grieve what you thought you lost, because you got something so much more. You have a child who teaches you grace and patience and kindness and strength. You are one of the lucky ones. Image via Contributor. A version of this post originally appeared on In His Own Time. We want to hear your story. Become a Mighty contributor here .