My wife Jodi and I are blessed with four amazing children – Levi, Luke, Isaac and Addilyn. Isaac, who is 15, has Down syndrome. He was an unexpected blessing and continues to bring joy to our life every day. Our family and friends who are lucky enough to know Isaac will be more compassionate people because of it.
Wednesday is World Down Syndrome Day, a day when the syndrome draws increased attention. No person wants their child to have Down syndrome. But some of the best things in life are surprises.
To some, our family isn’t perfect. But, what really is perfection? To me, our family is exactly the way God wanted it to be. After all, God doesn’t give us any situation without the strength to face it.
And no – I do not want to be admired. I do not want your sympathy or for you to look at me differently because my child has Down syndrome. It is Isaac who should be admired. Every day with Isaac is a cause for celebration, whether he is surprising us with something new he learned or the happiness and joy he brings into every room he walks into.
Isaac’s life is a gift. And you know what? I feel bad for people who don’t have an Isaac in their lives, because some people, like Isaac, just spread sunshine wherever they go!
Washington Post Deputy Editorial Page Editor Ruth Marcus wrote a column earlier this month headlined: “I would’ve aborted a fetus with Down syndrome. Women need that right.”
My response is that we must not devalue any human life. Instead of focusing on a perceived flaw, we need to focus on a person’s ability to have a positive impact on this world.
Just because there is testing and we can see this specific imperfection early on, why should it be our decision to determine whether or not someone deserves life? While we perceive there will be challenges that this person will face later in life, why does this give us the right to decide that he or she should not be born?
If it becomes the norm to abort children because they are not what we wanted, what’s next? Will we abandon children because they are not the gender we hoped for? Will we disown our children because they have brown eyes instead of blue? Will we look at an ultrasound, counting fingers and toes and end a life because it is not our vision of perfect?
Being different shouldn’t be a crime punishable by death. After all, we are all different.
All of my children will face challenges in their lives, However, Isaac doesn’t wake up in the morning worried about challenges. He wakes up every day with the excitement of opportunity that lies ahead. The opportunity to greet each family member with a good morning hug. The opportunity to listen to his favorite music. The opportunity to shake hands with friends and share some ice cream and his favorite movies.
Isaac’s life is a gift. And you know what? I feel bad for people who don’t have an Isaac in their lives, because some people, like Isaac, just spread sunshine wherever they go!
I am pro-life. I support life from conception to natural death and I will fight the rhetoric that one person’s life is not worthy just because they are not what we thought we wanted.
PETALING JAYA: Khairy Jamaluddin came with mismatched socks to the Cabinet meeting but it was not a wardrobe malfunction.
"Was I in a rush to get to Cabinet this morning (March 21) and couldn’t find a pair that matched? Is this a new OOTD (outfit of the day) thing? No.
"My mismatched socks today are a tribute to World Down Syndrome Day," said the Youth and Sports Minister in an Instagram post on Wednesday (March 21).
Khairy said that World Down Syndrome Day, which falls on March 21, is about loving people as they are.
"It's to remind people that things and people can be different but also beautiful and amazing as they are," he said.
Khairy said that his mismatched socks were also in honour of his niece Aisha, who has Down Syndrome.
"She is smart, beautiful, funny, active and has been a confident public speaker advocating inclusive education where typical and atypical kids study together," he said.
"She is a constant source of inspiration for me to make society more compassionate, to reduce barriers for people with different abilities to reach their full potential, and to ensure no child is ever left behind in a dark room, out of sight and out of mind," said Khairy.
He also praised his sister and Aisha's mother, Kak Hana, for raising her daughter as a single mother.
"I remember once asking her, if she had the power to change things, would she change Aisha so that she didn't have Down Syndrome.
"My sister said: 'No way would I change anything. Because if I did, she would no longer be my amazing Aisha.'," recalled Khairy.
"Happy World Down Syndrome Day. Come as you are. As you were," he said.
Kiwis with Down syndrome want to change society's perceptions about them.
In a New Zealand Down Syndrome Association video, 14 Kiwis share the benefits they bring to the community by volunteering, mentoring youth, public speaking, filmmaking, being fluent in te reo and teaching kapa haka.
Abigail talks about she got a job after completing a certificate in employment and community skills at Unitec. Edward won a gold medal for swimming in the Special Olympics.
Association national executive officer Zandra Vaccarino said the video, released to mark World Down Syndrome Day, was addressed to health professionals as they have a crucial role to play in correcting myths and have the power to change society's perceptions and narratives about Down syndrome while also providing valuable and appropriate health care and support.
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"Dear Health Professionals, we're here to share a message. We're all different and unique, we all have value, and everyone has the right to live a happy and healthy life," Vaccarino said.
Edward won a gold medal for swimming at the Special Olympics. Photo / Supplied
In New Zealand, one baby in 1000 is born with Down syndrome, or about one to two babies a week. Down syndrome happens when an individual has a full or partial extra copy of chromosome 21. The extra genetic material changes the course of development and causes the characteristics associated with Down syndrome.
IHC director of advocacy Trish Grant said all people needed to be celebrated and valued equally.
"Things that make life good for us all are also critical for to people with Down syndrome. Family support, a happy upbringing, access to education and support to achieve, then jobs and other activities enable people with intellectual disabilities to contribute to their communities."
People with Down syndrome have a life expectancy 20 years shorter than the average. Nearly 20 per cent of children with a disability live in families with an income of less than $30,000 a year, the IHC reported.
Grant wanted health professionals to better respond to the poor health outcomes for people with Down syndrome.
The awareness video is part of the international #WhatIBringToMyCommunity campaign, led by World Down Syndrome Day.
The aim of #WhatIBringToMyCommunity is to empower people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.
March 21 is a day of celebration in the Down syndrome community: it’s World Down Syndrome Day.
There are three types of Down syndrome:
1. Trisomy 21 (or non-disjunction) is the most common. All cells have three copies of the 21st chromosome (which is why we celebrate on 3/21).
2. Translocation Down syndrome happens when part of chromosome 21 becomes attached (translocated) onto another chromosome. People with translocation Down syndrome have the usual two copies of chromosome 21, but they also have additional material from chromosome 21 attached to the translocated chromosome.
3. Mosaic Down syndrome happens when only some cells have an extra chromosome but other cells in the body are typical.
Down syndrome is the most common chromosomal condition. While there are certain health and developmental issues as a result of the extra chromosome, that is not what defines a person with Down syndrome.
I have a daughter with Down syndrome who is 10 years old. She is the light of my life. There was a time I thought her diagnosis was “scary,” but I have learned our life is brighter and filled with more joy and love because of her.
We reached out to other parents who have children with Down syndrome and asked them what they wish people knew about Down syndrome on this World Down Syndrome Day.
These were their beautiful responses:
1. “I was afraid, too. Afraid a Down syndrome diagnoses meant a lower quality of life for my son. Like most fear, my fear was based on ignorance. The more I learned and the more I experienced, the more that fear was replaced by excitement. There is no reason to think his future will be any less amazing than his first three years have been! Love my little mischief maker to pieces!” — Deena C.
2. “To new parents: It is OK to be scared when you find out. It is OK to grieve what you had thought would be. It’s OK. You are not less of a parent for being sad at finding out this diagnosis. Grieve, and let those feelings go. Make room in your heart for the child you do have and all of the wonderful things that will happen because of them.
To the rest of the world: She has Down syndrome. She is not a ‘Down syndrome child.’ It is a part of her, but it does not define her. Do not define her by it. Let her show you who she is. Right now, she is an adorable, 4-month-old, happy, smiling baby girl with a big brother who adores her.” — Lisa R.
3. “Please do not pity me. Don’t worry about me. My son has made me the most enlightened , kind, empathic and patient version of myself. The only thing we should be doing with people who have Down syndrome is thanking them!” — Beth A.
4. “Down syndrome is not all that scary! People with Down syndrome want the same things as everyone else: the chance to live, to love, to succeed, to be treated as an equal.” — Jon K.
5. “Too much information that prospective parents receive about Down syndrome is either out-of-date, heavily biased or deeply embedded in the medical model of disability. When it comes to Down syndrome, the social model is far more applicable to reality. Much of that information is based upon old studies which used very small samples or were done when it was more common to find people with Down syndrome living in institutions [rather than] thriving in their lives. More importantly, if you want to know what Down syndrome is actually like, ask people who have Down syndrome. Talk to their siblings, their parents. Read about the many achievements of people who have Down syndrome.” — Maxine N.
6. “[Down syndrome] is not at all what I had imagined life to be. Our daughter fills our days with joy and laughter. But she also has all the same emotions her sister without Down syndrome has. She’s capable of anything and everything; she just needs people to believe in her and help her, and she’s succeeded. She’s 4 years old and learning to read. She’s very loved and we’re very blessed!” — Maria M.
7. “It gets better and more rewarding each year. My son with Down syndrome will be turning 40 this year and has helped me know a world that has more to offer than I ever imagined.” — Judy D.
8. “The unknown is always scary. We never know what we are capable of until we are put into a certain situation. The first thing people think of when they hear Down syndrome is disability, struggle and burden. When I look at my daughter I think happiness, strength and independence because that’s what she is. Her milestones may be slightly delayed, which just means it will take a little longer to get there, but she will. She will go to school, graduate and get a job. People with Down syndrome are capable of anything. Never limit them, and never assume anything. You’ll never know what you’re capable of or what they will be capable of if we let fear drive us.” — Marissa H.
9. “[Kids with Down syndrome] are like any other kid, with the same interests! They make you realize what strength you didn’t know you had! And they make you appreciate the little milestones that most parents don’t even think about.” — Esperanza H.
10. “
11. “Down syndrome is not something to be afraid of. Most likely, your life will be more complete than ever before. My son with Down syndrome is my life teacher, he has taught me to live more in the moment. The joy he gives me is inexplicable. He is my magic little boy. There is magic in that extra chromosome!” — Ana-Luisa G.
12. “Everyone has something to contribute to this world. There is value in all diversity and all abilities.” — Elena B.
13. “This is life with Down Syndrome for us: giggle-filled chases around the house, rainy-day dance parties and the most awesome harmonica playing you’ve ever heard from a 3-year-old!” — Terina R.
14. “You probably don’t know anything about Down syndrome because I didn’t before I was blessed with my awesome baby boy 14 months ago. Many of the things you think you know probably are untrue or outdated. Just please take the time to educate yourself. Please don’t feel sorry for me or my son because I would not have him any other way. Our family is much better with him in it!” — Dan L.
15. “Down syndrome doesn’t equal death sentence! It’s a little scary and it’s a learning curve, but it’s also a beautiful life and so rewarding!” — Jennifer M.
16. “We aren’t suffering. I would be suffering without my son, I know that.” — Erin S.
17. “Every child and adult with Down Syndrome is worthy and able.” — Shannon D.
18. “People with Down syndrome are more alike than different.” — Kelly J.
19. “Stop asking me how my other sons ‘deal with’ having a brother who has Down syndrome. He’s their brother! That’s it! They throw stuff at each other, and wrestle, and fight, and fight people who mess with them, and laugh together, and do crafts together, and plot against Mom together. They’re just brothers. They are not Xavier, Logan, and their ‘Down syndrome brother’ Anthony. They are just brothers. We are just a family.” — Britt S.
20. “All my boys (both with Down syndrome) want is to be like their ‘typical’ peers. To me, inclusion is huge!” — Suzanne M.
21. “Love abounds within the families [of individuals with Down syndrome].” — Lucinda B.
What is one thing you would want people to know about Down syndrome? Let us know in the comments.
