This year, in the days leading up to Trisomy 18 Awareness Day on March 18th, we asked our amazing supporters what were the Top Things We Wish People Knew about Trisomy 18. Over and over again, you shared what you wished people and other parents knew about having a child with Trisomy 18, and it essentially boiled down to these most important points:
- We love our children just as much as other parents do.
- Our children are just as special and their lives as meaningful as any other children.
- The experience of having a child with Trisomy 18 isn’t a tragedy but something that brings us love and joy and enriches our lives.
As we head into summer and get ready to announce some exciting changes at the Foundation, we thought we’d share a few of our favorites for you:
YOUR TOP 10 THINGS YOU WISH PEOPLE KNEW ABOUT TRISOMY 18
- Advocating for our children will become our most important job.
“These special, amazing and incredible children MATTER. They deserve every chance to live a beautiful life. It will be our duty as parents to constantly advocate for our children and fight with them.” — Narleen
- Sure, there is pain that comes from having a child diagnosed with Trisomy 18 but there is also great joy.
“One thing to know that through all the fear and pain a beautiful child will bring more to your life that you would have never known possible.” — Sonya
- Don’t avoid talking about our children. Pretending they don’t exist doesn’t help. At all. Say their names. Remember their birthday (and the anniversary of their death). Talk about their beautiful smile. It doesn’t matter what you say–what matters is that you acknowledge them.
“What I wish people knew about Trisomy 18 is that it is important to speak about our babies and honour them in any way possible. Our babies are such brave little fighters and it means more than people will.” — Adam
- Our lives are forever changed by this experience. We will never get back to “normal,” and we don’t even want to. Don’t expect that.
“That even though my son died, my life is forever changed by him. He was the missing piece of the puzzle in my life. Meeting him, for even two days, made me better.” –Kristin
- We love our kids just as much as anyone else does. Period.
“I wish people knew that although these babies have Trisomy 18, they are very much as precious and loved as any other babies. Saying that it’s a blessing our baby died soon after birth is not comforting. We would have gladly spent our lives looking after her, however tough it might have been at times.” — Wendy
- Don’t judge our child’s “quality of life.” Our children’s lives aren’t measured by other people’s ideas of what kind of life is worth living. We are grateful for every moment we have with them.
“How hard it is to hear ‘no quality of life.’ Excuse me! EVERY moment the mother carries the baby is a quality of life. Every moment the heart beats is a quality of life. Every moment a breath is taken is a quality of life. Love of God’s precious Trisomy angels can not be measured or rated!” –Kathleen
- Trisomy 18 is not “incompatible with life.” Hearing these words are so painful, and this view of the condition prevents healthcare providers from treating children with Trisomy 18 as individuals. We can do better! Most parents prefer “life-limiting” condition. And aren’t all our lives limited? [Tweet “Parents want you to know Trisomy 18 is NOT “incompatible with life.” “]
“I wish the medical field/ people knew that they were not incompatible to life because they’re not.” –Josh
- Don’t give up on our kids. Feeling like you have to constantly fight for access to healthcare makes an already difficult situation more challenging.
“I wish that the medical profession would not give up on these kids. My daughter is 14 and the biggest taxation has been the constant fight to have her accessed to the basic rights of any human being.” — Jill
- For many parents, our relationship with God and spirituality can actually be deepened by this experience. Contrary to the expectation that many people whose child receives this kind of diagnosis will automatically become bitter and angry at God or question their faith, for many parents, this experience deepens their spirituality and relationship with their faith.
“This may not have been what we would have chosen for Beckett, but we know that God makes no mistakes, and that He has only good plans for her life. We are so thankful to be her parents and to be able to care for her!”– Amy
- Having THIS child? This experience?
“Worth every second.” — DeAnna
Which of these resonate the most with you? Are we still missing something you wish people knew? Share in the comments.