Tomorrow is World Down Syndrome Day, a day globally recognized (and officially observed by the United Nations) to raise awareness and celebrate individuals with Down syndrome and chosen on the 21st of the third month to represent three copies of the 21st chromosome. We cannot imagine life without Nella, and although we weren’t expecting that extra chromosome with her arrival eight years ago, we’ve learned so much about ourselves, the world around us and what really matters in life because of its presence in our family. In celebrating the lives of these incredible individuals on World Down Syndrome Day this year, here are 8 Things I’ve Learned from Having a Child With Down Syndrome.
#1: Life is hard. Just accept that.
So much of my devastation receiving Nella’s diagnosis was due to the fact that I got swept up in how comfortable and according-to-plan life was going that I expected it to stay on that path. We are not entitled to a life free of challenges, and clinging to a dream of ideal/easy/comfortable sets us up for incredible disappointment when the inevitable unexpected happens. In those first weeks after Nella was born, I read the words of Scott Peck and actually felt relieved—like I was given permission to stop fighting/grieving/analyzing what had happened and just accept that it was part of life. “Life is difficult,” he wrote. “Once we truly know that life is difficult—once we truly understand and accept it—then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” When I dream of the future now, I try to focus less on specifics I can’t control and more on the greater picture: I expect a life of love and fullness, and when I encounter the hard unexpected things in life, I will overcome them and use what I’ve learned to be better.
#2: Down syndrome isn’t what makes life hard.
Now that #1 is out of the way, here’s a surprise: That big life-changing diagnosis we thought would make life hard? Turns out the harder things in life have had little or nothing to do with Down syndrome. As for the future, we cannot be sad or stressed about a chapter that hasn’t even been written yet. And when it comes time to write that chapter, we will be ready. The tenth chapter of a math book looks entirely overwhelming on the first day of school, but when you arrive at it when you’re supposed to—after you’ve completed chapters 1 through 9—it’s just another math lesson.
#3: Love the child you were given.
Having Nella has helped me understand this more deeply for all of my kids. Our children will surprise us numerous times in their lives, both in ways that make us feel happy and proud and in ways that hurt and are hard to grasp (don’t worry—we did the same to our parents). But the child you get is the child you get. They might not like the sports you like or the clothes you pick out. They might not learn to read as fast as you did or take an interest in ballet like you had hoped. They might vote differently than you someday or join causes you don’t support. But we are going to have to let go of all of that, because we only have one job…to love them. More than anything, our children need overwhelming, no-strings-attached love as the unshakable foundation on which they will build and rebuild their experiences.
#4: There’s more to communication than words.
“What if I can’t understand my child?” is an overwhelming fear when, as a parent, you want nothing more than to deeply know your child and meet her needs. While Nella can speak very well now, her vocabulary developed at a slower rate, and her communication is different than her peers. Through these past eight years, we’ve understood more how words are only a small part of communication. I have only felt the most intimate connection with Nella through her touch, her expressions, her behaviors, her humor, her tone and her heart. Her messages are intentional and meaningful, and we listen well when she communicates. And the best part? I’ve sharpened these communication skills and recognize and use them with people wherever I go now.
#5: Enough of the metrics!
At seven months, your baby should be combining syllables. Near 12 months, your baby will likely be practicing taking a few steps. Your toddler should be gripping a crayon now. Your kindergartener should know these sight words. Your third grader should pass this test. Your fifth grader should ace that test. Your high schooler should have this GPA. ENOUGH OF THE MARKERS AND METRICS FOR MEASURING A CHILD’S SUCCESS! Having Nella and celebrating the different ways and pace at which she learns has inspired us to let go of numbers, tests and comparisons for all of our kids and instead applaud interest, effort and expression. We put less weight on report cards and test data and focus more on communication with our teachers and evidence that shows our children are exploring the world, making art, pursuing interests, utilizing resources, fostering connections and contributing their unique gifts. Numbers can sometimes be a helpful tool to point out what our kids need, but will never be used to represent my children’s potential and value.
#6: Be a microphone for those whose voice needs more volume.
Having a daughter who is part of a group of people that have been marginalized in society for years has made me more aware of how I can use my voice and my vote for groups of people who don’t have the same opportunities as I do. Our family is more attentive to the needs of others. more sensitive in recognizing inequality and more motivated to support those who have to fight harder for things. Advocacy brings purpose to our lives and a greater connection in our community. Find causes to represent, find people to support, find friends who are marching for something and show up with a poster to march with them. You will be better for it. In the great words of Martin Luther King, Jr., “Life’s most persistent and urgent question is, ‘What are you doing for others?”
#7: YES YOU CAN.
My child works harder than anyone to accomplish things when the decks are stacked against her, and she proves again and again that she can do things that were once considered impossible accomplishments for kids with Down syndrome. This community is hearty and headstrong, and our advocate ancestors paved the road by refuting a whole lot of “Can’t”s with “Watch me”s. I’ve had lunch with a woman with Down syndrome who had just received her driver’s license, helped organize a dorm space for another who settled into college, and sipped wine with a mom who complained her son with Down syndrome never calls her anymore because he’s too busy socializing with his friends–all things that were unthinkable for people with Down syndrome 30 years ago. My daughter’s quality of life has drastically been made better because of three simple words: “Yes. She. Can.” Bonus: It works for moms too. Ever see a mom in a tough parenting situation and said to yourself, “I could never do that”? She probably thought that once too, and yet she’s doing it. Yes you can.
#8: Enjoy the Moment.
More than anything, raising a child with Down syndrome has taught me to sit back and enjoy the moments. So much of parenting is spent anticipating the next phase: When will he start walking? When will she write her name? When can I sign him up to play soccer? Each phase is quickly followed by another so that cherished moments flash by in a blur, and we often recognize how wonderful they were only once they are gone. We discovered early on that many of Nella’s phases last longer than usual. She didn’t walk until she was two, so we didn’t stress about the milestone and rather used her delay as an opportunity to sit back and soak up the smooshy baby phase–so many days of her snuggled in our arms or her head pressed against our chest all nestled in the baby carrier. And learning to read now? It’s so beautiful to watch it slowly unfold, and our entire family gets to be part of it, pulling out sight words games at dinner, pointing out letter sounds on signs, celebrating new word recognition with family cheers and clapping. Time has slowed down for the very best things in life, giving us the chance to recognize that these moments–this learning about the world–is what life’s all about, and it’s something to be savored and celebrated.
We are thrilled to celebrate unique abilities this week and are so grateful for our girl and the vibrant contribution she is making to our family, our community and this world that needs more colorful variety and compassion. If you love someone with Down syndrome and want to share what you’ve learned from them, leave a note in the comments.
Thank you so much for what you write! I have a two year onld toddler with DS and love everything about him ❤
I have learned that caring and inclusion work both ways. The more we as parents and grandparents show the world how to be kind and include the previously marginalized (as you put it), the more all of our children follow suit. My third grade granddaughter was just recognized as Student of the Month at her public school for CARING. I could not be more proud. Of all of us.
Love this so much!
This. Yes. I am in tears because your words came from my heart. This is my favorite of all your posts. My grandson has Down syndrome, so yes! This.
I don’t have a child with Down syndrome, however, I do have a son with Asperger’s Syndrome. In 26 years, he has taught me more than I ever knew that I didn’t know.I know that sounds funny but here I was a well educated woman with a good job and then stop! Charles was born. The last 26 years had been a little bit of a blur since time goes by so fast. He has showen cme to take time and slow down. To enjoy even the most minute thing. Did you know the dishes will still be in the sink after you sit down discuss the day and watch an incredible sunset? Kelly thanks for all you do for all of our children.
Thank you so much for this post.
I have an aunt in her 60s who has Down syndrome. We love to sing and dance to music together! She has changed the lives of everyone in our family, and it is hard for me to put into words the impact that she has had on my life.
I love this post Kelle! Isla has taught me the value in a smile and a wave. She is the friendliest kid around and is so persistent in getting a return wave from strangers. I’ve seen her work her magic on the grumpiest woman at the grocery store. She has taught me to connect with strangers because sometimes a smile is all we need to lift us up!
Ahhhh. The smile and a wave. So simple but such a gesture of “I see you. you matter.” Love this, Emily. xo
Thank you! ❤️ I have a two year old daughter with DS and she has definitely taught me to slow down. Enjoy life!
Kelle,
Our daughter, Holland, will be 3 on April 1. She has Down syndrome as well. Your book was the first book I read shortly after she was born (literally a week or 2 after!). Everything about Down syndrome was too knew and fresh and reading your birth story about Nella just hit way too close to home. I set the book on the shelf and came back to it a couple of months later. It was just the therapy I needed as a new mama with a special needs babe.
Your post is on pointe and I couldn’t agree more with what your wrote. I so enjoy following your family and watching how Nella lives and thrives in this world. An encouragement as we are trying to patiently wait for Holland to walk! ???? Thank you for sharing your perspective! When Holland was born my hubby asked our oldest (then she 8) what he thought about Holly having Down syndrome. He said it best, ‘She will teach us all what’s important in life and it will be fun!’
Thank you for the reminder of all of these things! As usual you put it perfectly!
#2 got me in the feels. Your words always go directly to a place in my heart that needed to hear them. “The tenth chapter of a math book looks entirely overwhelming on the first day of school, but when you arrive at it when you’re supposed to—after you’ve completed chapters 1 through 9—it’s just another math lesson.” GAH!! What an ah-ha moment! THANK YOU for your words and being you and sharing your family! My daughter, Abigail is 4.5. I too learned to throw the baby books out of the window. Abigail writes her own book, we just try to help turn the pages.
Love this ♥️ It was an a-ha moment for me too with the math book analogy!!!! Kelle always nails it!!!
“ When I dream of the future now, I try to focus less on specifics I can’t control and more on the greater picture: I expect a life of love and fullness, and when I encounter the hard unexpected things in life, I will overcome them and use what I’ve learned to be better.”. Love this. As someone with a lot of anxiety about the future, this is so helpful to me. I will refer to it often.
My Macy is just 8 weeks old and already she has taught me to enjoy the moment. I have 7 kiddos and I love each one of them with all of my heart, but I feel a different connection to this sweet babe with Down syndrome. I don’t know how to describe it yet, but I feel like my Mama Bear instinct is just a little bit stronger with her. Thanks again for sharing your beautiful life experiences!
I love everything about this! Thank you so much for sharing! My daughter is 20 months & has Down syndrome. She has already taught me so much & I know I will continue to learn from her! She is just what our family needed!
Love this. Thank you. ????
My little strong-willed toddler and I have butted heads only about 8345 times already this morning, and to sit down during naptime to read, “love the child you were given.” Just. Thank you. Needed it.
Beautiful post as always. Your blog was the ray of sunshine into my recovery room nearly 7 years ago as we were blindsided by our daughter’s diagnosis. I can never thank you enough for that. Grief for the change in our life’s direction eventually turned to incredible thankfulness for the luck of our draw. She has taught us that life is a marathon, not a sprint. If you keep worrying about the mile markers, you will miss the scenery. And, man is this world really beautiful if you stop to look around and take it all in. Through her many forms of communication, she is helping her siblings develop a level of emotional intelligence to rival hers. Our lives are better and fuller because of the perspective she brings. And we can do anything, even the really really hard things, because our sassy little sister doesn’t let anything stop her. She’ll problem solve and figure out a way to get what she wants done. Cheers!
I wonder also is part of some many of realizations also a result of birth order? I’ve got 2 young daughters and I know some of my carefree love of the second, is I know that whatever is happening at the moment is fleeting. I so want to capture that emotion and apply it to the struggles with the oldest, but I can’t quite get my brain on board. It is something I just keep working on capturing that magic and spreading it around.
So beautiful and touching <3 I loved reading this. You have a beautiful family. God Bless!
XO, Katie | http://www.meshkomoments.com
My Baylee is 17 and absolutely the heart and soul of our family, both immediate and extended. She is the oldest of our three daughters. I have learned patience. I’m a control-freak by nature and over the past 17 years I’ve learned that often times I need to just step back and patiently wait for things to unfold. We’re constantly going, faster and faster, but with Baylee, I just need to take a deep breath, step to the side, and watch. I laugh more because of her – she has a wicked sense of humor, I see more because of her – I honestly never took the time to notice all of the beautiful people around me who are unique and special in the way God designed them, and I know that I love bigger because of her. Her life has value and meaning, she is loved and wanted. She may not achieve the academic feats that her sisters are headed toward, she may not be the athlete, musician, artist, etc that much of society reveres, but I can promise she’ll leave a mark. Her family has changed because of her, her teachers, classmates, and so many in our community know her and see her for the kind, compassionate, selfless, non-judgmental, cheerful, witty, loving young woman she is.
So love this! Not afraid to be disagreed with when I say this, but I happen to believe that my nephew Eli was perfectly and intentionally designed by God just as he is. Not as punishment (as some have sadly believed) or by accident, but as a gift. My sister and her entire family are better for having him. They love deeper, sacrifice more, and understand more clearly. No doubt God has enriched them and the rest of us with Eli.
“Every good and perfect gift comes from above..” James 1:17
I have a beautiful niece with DS and that spunky little girl was the catalyst for me to shed a layer of skin I didn’t know needed shedding, but only to reveal a truer and more lovely version of living. I celebrate her in so many ways!
I so needed this today. My baby is 9 mos. She has DS. She has so changed me for the better! You are an inspiration! Thank you ????????
I sat next to a girl with Down syndrome and another girl with other developmental disabilities in middle school choir. I sat next to them because they knew better how to be a friend than the other girls in middle school. The most important skills in life are hard to measure but easy to recognize. Debbie and Meghan didn’t care what brand of shoes I wore or if I was cool enough by other metrics.
I just recently found you on IG. This is an amazing blog. My sister is expecting a baby with downs and the news was a has taken time to process. I wish I had the prefect thing to say. Do you mind if ask, What would you want some one to say/do to you in those first moments of to lift you up or help to make some one feel supported? Thanks for being such a positive view of this community.
This is one of my favourite posts. Thank you thank you ????
Kelle I this is the best article about parenting a child with Down syndrome I’ve ever written. This sums it up perfectly. Xoxo
https://www.youtube.com/watch?v=Biex1XR_mpo
Have you seen this? Beautiful.
Oh my, I watched this and I am now a blubbering mess. So beautiful and moving to watch! Thanks for posting this link!
u put my feelings into perfect words, thank u !????????????????????????????
This post is also wonderful for ALL parents to know/feel. #3 is a big one for me. I had this ideal in my mind for my first born and boy is he ever the exact opposite. It bothered me for a while until I just accepted him for him. I stopped trying to make him something he’s not. And you know what, he and I are both happier for it. Love your kids unconditionally no matter how they turn out. As long as they have your morals and ethics, it doesn’t matter that they don’t follow your path/plan. God makes a plan for everyone and who are we to control it?!
My friends sisters family was highlighted in the news. It’s an amazing story.
When she heard about her son, she said yay!
https://www.facebook.com/clickmillieclick/posts/10216645727684499
I posted the link incorrectly. Here it is.
https://healthmatters.nyp.org/a-newborns-six-month-hospital-stay/
Kelle….
Happy, happy, happy World Down Syndrome Day!! Did you know that you’re supposed to wear colorful, fun, and even mismatched socks on 3-21 to celebrate our differences?! Neither did I, until today!! I just thought you should know!! I am wearing my rainbow St. Patrick’s Day socks today!! 🙂
If I could choose just one thing that I’ve learned from my youngest brother, Michael—who has Down syndrome—it would be…. To serve somebody…. With diligence and initiative!! Michael has such an incredible servant’s heart!! 🙂
Peace out, Mary Lou
My son Aidan has Down syndrome. He has taught me that nothing in life is guaranteed. He has shown me how to stop and savor those sweet, simple moments when you can just be.
My name is Michael, I am 30 years old. I love to dance and to play lots of sport. I dance two nights each week. I play basketball, netball, tenpin bowling, bocce and like going to the gym. I go to football with my mates and cheer as loud as I can. I work four days each week and volunteer at church and in the community. I became engaged two years ago and I love my girl very much. We go out on Saturday nights and play some of the same sports. I try hard at everything I do. I have a journal and I write down all the things I dream of doing, then when I do them I write that too .
PS: I have Down syndrome.
That paragraph from Scott Peck’s book changed my life. Life is hard, once you accept that, it does get easier, everyone has something they struggle with. Thanks for reminding me. Happy 3/21 sweet Nella Cordelia.
It is so strange to literally be along on this life journey of yours and realize I discovered your blog right before Dash was born! I was mesmerized by Nellas birth story and have been along for the ride ever since. But holy guacamole Nella is looking so grownup! I hardly recognized her in a few photos it was the strangest thing. I swear she is growing into such a big girl practically over night. It’s crazy how time flies but all these great photos and memories are going to be such a treat to your kiddos one day!
I do love someone with Down Syndrome..TWO of them. The first one is Tyler Starr. He is 21 years old. The other Nella~ Tyler’s parents love him immensely but they never taught or knew they could, teach him him how large his potential is~ You inspire me~!
Our children can and maybe will live up to what you expect of them, “says the mama who has a drug addict daughter, who I love with all of my heart”.
You are a great mama Kelle!
Thank you for this post. My two year old may have autism and I have been freaking out. I keep telling myself that it will all be ok but, I’m still worried – it still hurts bc I worry about what he can’t do instead of what he can.
This has opened my eye and I feel so much better about the whole situation. I already knew that no matter what – he will always be mama’s man, I would never love him less if he is considered autistic. But I needed someone to say all the things that you just said. I really needed that. Thanks again! xoxo
Thank you for sharing your story. It is such an inspiration.
Yes I can. I teach people with special needs, I have a credential in mild to mod and mod to severe. I teach quite a few people as above and you must give them time to process and do tasks. Teach the task correctly the first time then give time and space. Remember, learning is fun!
Thanks for this wonderfull post!
I come from Greece, a country where people with Down’ s Syndrome are still considered ”retarded”. In my country, kids like Nella, kids like Kirsta, can olny go to ”special” schools, designed for kids with special neeeds, they can never have their driving licence or live independently. Why? Because the State and the society keep thinking that down syndrome is a disease, a taboo, something we have to burry, something we need to cope with.You helped me understand, via your posts, that Ds is not something to be afraid of.. I really enjoy seeing Nella -and her siblings- blossom day by day!
Happy World Down Syndrome Day!
#4 is my favorite. While it’s still somewhat of a fear of mine (my son is just 2), you are so correct… there are so many ways to communicate.
My daughter has truly taught me that IQ is not important for success in life. The other day, a friend at work said of her daughter, “I just want her to be smarter than I am.”
Without thinking, I said, “Really?! I just want my kids to be happy.” As soon as I said, I realized it was really true for me now. There are plenty of highly intelligent people who live tortured lives. A happy life, even if it happens in the shadows, is a successful life.
I have a beautiful 4 year old baby girl with DS and I too am learning to just enjoy the long phases. Nella is so beautiful and she inspires me…thank you for letting us see her accomplishments.
Any child is a blessing and a gift, and if yours has a disability, that only makes them even more special!
My aunt, Kim, had Down syndrome and passed away last winter. Growing up with her, she was always ready to play and loved taking care of us. Kim taught us to be patient as kids, that it wasn’t always about us, and that everyone needs help in this world – not just those with a disability. Kim gave us visibility and intimate familiarity with Down syndrome. When I saw other disability in the world it wasn’t scary. Even though I don’t always know how to react or act, I know it’s okay to simply ask, “is there anything I can do to help?” and not get offended if they say no. I know because of Kim that we are all in this life together and Down syndrome is just one thing about some people that connects us all.
Dear Kelle,
I have read this post many many many times now, cause something kept pulling me back to it. I do not even have a child with down syndrome. Then i realized, that in this competitive world…realizing that slow down and enjoy and “love the child you were given” resonates for every child. I like in a competitive environment, highly competitive with a lot of tiger moms, and sometimes it influences me too…i get worried if i am not teaching my child enough, if she s falling behind and this post inspired me to slow down and enjoy my child, that the 10th chapter won’t be complex after the first 9 are done… so many things about this post tugged at my heart. Thank you for writing it, you have helped me so much in this phase of life.!
rewrote the comment to remove tiger moms.
Dear Kelle,
I have read this post many many many times now, cause something kept pulling me back to it. I do not even have a child with down syndrome. Then i realized, that in this competitive world…realizing that slow down and enjoy and “love the child you were given” resonates for every child. I live in a competitive environment and sometimes it influences me too…i get worried if i am not teaching my child enough, if i am not enough, if she s falling behind and this post inspired me to slow down and enjoy my child, that the 10th chapter won’t be complex after the first 9 are done… so many things about this post tugged at my heart. Thank you for writing it, you have helped me so much in this phase of life.!
Hi Kelle, I just found your blog in Magnolia magazine. My daughter with Down Syndrome is now 24. Everything in your article was exactly what I was feeling before and after I gave birth to her. She was my first child so it was very hard at first. Now she is my whole world. The lessons she has taught me are never ending. She was homecoming queen her senior year. She rides horses. She hunts with her dad (her most favorite thing to do) and made a clean shot at 300 yards! She continues to amaze us all the time and always with a smile on her face. Down Syndrome is not a disability, our doubting people’s ability is. Thank you!
Thank you, our granddaughter is 20months can bum shuffle but not crawling. Makes sounds but no words. I now realise that it’s her journey and we need to enjoy the little things that she achieves and not stress, all in good time. The baby time is longer for her so as you said more cuddles.❤️