Quotes from Grandparents
In navigating the journey of welcoming a grandchild with Down syndrome, many find that the personal insights and experiences of others can be far more comforting and enlightening than clinical information alone. We've gathered a collection of heartfelt quotes from grandparents who have walked this path before. This overview is crafted to offer support and understanding to those who have just learned about their grandchild's diagnosis. Parents also often find these perspectives valuable as they reflect on their own experiences. Through these shared voices, we hope to provide reassurance, empathy, and a sense of connection during this significant time.
Initial Reactions and Shock
“At the ultrasound, it turned out that the baby had a thickened nuchal fold. My daughter had an amniocentesis, and it was confirmed that the baby had Down Syndrome. I never doubted the baby would come. My daughter has always worked with children with disabilities, so she knew a lot about it. Her reaction was: if this is it, it’s not so bad. In hindsight, we still feel the same way.”
“When my granddaughter was born with Down Syndrome, the ground seemed to fall away from under my feet. Your world collapses. But you just keep going; no one has guarantees in life. Soon you learn not to worry about things that don’t (yet) exist. Enjoy the things that go well.”
“Our son called and said: ‘We have a son.’ I asked: ‘Is everything okay?’ ‘No,’ he said. Then the ground fell away from under our feet. ‘Everything is physically fine, but he has Down Syndrome. I’m going to the hospital for further testing now.’ You’re shocked, but as soon as he’s in your arms, everything is over. He was so beautiful, but very floppy.”
“It wasn’t known during the pregnancy. No screening done, didn’t think about it. But also, what do you do with the result? It was a shock; my son was also extremely emotional. But he was also a first-time father. The shock wasn’t about our grandchild, but about our son and daughter-in-law. You don’t want this for your child. That was the first emotional thought. Then our concern shifted to the baby. She didn’t open her eyes for a long time, and we worried about that in the first weeks.”
Early Experiences and Adjustments
“My daughter spent a lot of time in the hospital with the baby during the first year. My son-in-law was at home with the older child. I also went to the hospital, just to be there for my daughter. There’s not much more you can do. But it was nice that I could do this.”
“We were shocked when it turned out that our granddaughter also had a heart problem. She was put on the waiting list for a heart surgery at LUMC in Leiden the same day. After three months, she was operated on, and she was home again after a week. She turned out to be a real fighter. She was a different child: had a beautiful, healthy color and much more energy. She could suddenly drink her bottle! Now she could start developing.”
“I found it difficult to say at first and often cried. Now, after a few months, it’s better. Everyone was very positive, and I received nice cards. That helped a lot. There was really only one response that wasn’t so nice, but that was because the person didn’t know what to say.”
Processing and Acceptance
“In hindsight, it would have been helpful if we had known in advance. Son and daughter-in-law think so too. You want to be prepared and able to read up on it beforehand.”
“My daughter called to say our grandson was born. In the hospital, my daughter asked: ‘Don’t you see anything?’ We didn’t see it. When I heard it, I thought immediately: ‘Oh, it will be okay.’ But grandpa cried all day. He was very sad about the worries our daughter would face.”
“After six months, Sanne had a heart surgery, and then we saw that our daughter was very happy that Sanne had pulled through. We saw that our daughter and her husband were very attached to Sanne, and they started to accept it a bit. Now that Sanne is a year and a half, they still find it very difficult.”
“Mom and dad were very positive and open from the start. They immediately went for it. That helped us a lot with the processing. Grandpa did intervene at the beginning when mom was overly worried about illnesses, etc. No one was allowed near the little guy when he was a bit sick. Grandpa told them it was exaggerated and that they didn’t worry like that with the first two children.”
Family Dynamics and Involvement
“My daughter later said that I did help her with the processing. I actually felt that I could have done more for her. We were so busy with the baby: making sure he drank well, undergoing tests, that I could have wrapped my arm around her a bit more often.”
“You offer to be there. When my daughter first saw the little one in the bath, she started crying very hard. I was just there. Sometimes she’d say, ‘I can’t handle this.’ I told her: ‘You don’t have to do this alone, we will always be there for him.’”
“I always immediately mention that my grandson has Down Syndrome. I need to say it; otherwise, it seems like I’m hiding it. It’s a part of him, and I’m proud of it. Jaimy is simply my grandson with DS, just as Mara is my granddaughter with a beautiful head of curls.”
“You become closer to your own child because you’re more involved. As a result, you see more of their lives. More than might be good. We solved this by offering a listening ear, but we always made sure not to criticize. You hear more, but it’s their life. You share it, but you shouldn’t be overbearing.”
Understanding and Advocacy
“I see now that there are enormous differences between children with Down syndrome. Our granddaughter has a truly unique personality. She has limitations, but she can also do a lot. She is a child of your children and thus resembles her parents. I didn’t realize that so much. She’s 10 years old now and we enjoy her. She has a good sense of humor (from her parents) and you can laugh a lot with her. On the other hand, she can be very stubborn about what she wants. We have to work hard to find a satisfying solution for both sides. There are also moments of frustration because she can’t do something. That’s sometimes difficult for her and for us because we want her to be happy. But a life without frustrations is not possible for any child. She also really enjoys company and good food. She says thank you to her parents for the delicious chicken sticks or asks us if we like it too, and we find that so funny! Our other grandchildren don’t do that. Wende lives a normal childhood, goes to school, does horse riding, biking (tricycle), dancing, and swimming. She has loving parents and I see a happy child.”
“Don’t be fooled, they understand a lot. If you have more patience, you’ll notice that too. It comes in more slowly.”
“There are now three more grandchildren on the way. They don’t want to know if any of them have Down Syndrome; they’re welcome regardless.”
Societal Reactions and Personal Reflections
“Be prepared for strange and stereotypical reactions from others, such as:
- ‘They are so sweet.’
- ‘Maybe it will get better.’
- ‘Maybe he doesn’t have it too badly.’
- ‘Why did they let him be born? That shouldn’t happen anymore these days.’
These reactions often come from ignorance. Try to find an answer for yourself.”
“I still encounter situations where mothers remove their child from the slide when I show up with Bonne. Then I say, ‘He’s not contagious or anything; he just has an extra chromosome.’”
“We were also asked this question. There are tests available, with the underlying assumption that these children shouldn’t be born. You have to justify yourself. That’s not pleasant. My response: ‘You’re the umpteenth person to ask that. You can test, but what do you do with the result?’”
“Our view has definitely changed. They have value in society. It’s nice that there are opportunities to integrate. You see that others react differently when you have come into contact with it. Everyone reacts differently. Some don’t notice it, others find it strange.”
“You can hardly call Down syndrome positive, but it has brought a lot of positivity into my life.”
Personal Growth and Lessons
“I once worked in a group home for people with disabilities. There was a woman in a wheelchair who couldn’t do much but worked with the computer. She sent all the emails, researched everything online, and was very important to other residents and the staff. I already knew that there’s a place for everyone, that everyone can do something meaningful. I’m not so afraid that they won’t fit into society. It takes more effort, but they can function just as well as anyone else, in their own way.”
“It’s going well with her now. She doesn’t have a very high level. She hardly speaks, except when it’s about ice cream. She learns everything by doing it a lot, especially if it’s something she’s interested in. We are very involved in her growing up. We want that too.”
“Just treat people with Down syndrome like everyone else because they want to participate. Treat them like any other child so they don’t feel different. They’ll feel different on their own. Respect them and let them experience everything, for example in a G-team.”
Reflections on Parenting and Grandparenting
“I find Dana very nice. I don’t see her very often. With a regular baby, things change a lot after two weeks. Not so here. It goes much slower; you experience more of it. You have to wait a long time for each step, but when it finally happens, it’s a celebration. You’re more involved. Nothing is taken for granted anymore. You have to take care of a child, they don’t take care of themselves, which is endearing. For example, my daughter practiced a lot with feeding.
And after a lot of practice, she succeeded. After three weeks, the father managed it too. And three weeks later, I did as well. Then I think, yes, another success!”
“You also have to accept what he can and cannot do. And not constantly think: ‘Can he walk yet, can he do this, can he do that?’ It will come as it comes.”
“I often hear: ‘They are such sweet children.’ Then I say: According to me and statistics, that is no different from other children.”
“You see more than usual; you shouldn’t comment on it. My husband is better at that; we often talk about it. We are involved, and that is also requested of us, but there is still a limit.”
“We’ve always been very close. That has remained the same. I sometimes think, ‘Should they really do that?’ For example, they arranged a sleepover place for him. I think, ‘Is that really necessary?’ But it turned out to be okay. I never voiced my thoughts because it’s their child and their choice. And in hindsight, they always turn out to be right.”
“You become closer to your own child because you’re more involved. As a result, you see more of their lives. More than might be good. We solved this by offering a listening ear, but we always made sure not to criticize. You hear more, but it’s their life. You share it, but you shouldn’t be overbearing.”
Special Moments and Experiences
“A grandmother with an 18-year-old grandson: ‘In the past, I felt sorry for people with Down syndrome. Now I don’t at all. He’s just my grandchild; he’s part of the family. Fortunately, children are now well cared for. Koen also wants to look nice. We made sure he kept his tongue in his mouth. We did it together; it took a long time but succeeded. He still doesn’t speak well. This makes him socially withdrawn because he finds it difficult that not everyone understands him.’”
“A grandfather of a 15-year-old granddaughter: ‘We had a tandem. On that tandem, we had a child seat, first in front and later in the back so Ella could ride with us. We were quite a sight.’”
“Koen comes to stay with us on weekends and every vacation. We really enjoy that. The activities adjust accordingly. Now grandpa and Koen go to the pub together. With grandpa on the tandem.”
“Mara needs a lot of attention. I really enjoy spending time with her. I appreciate her simplicity and purity. It’s an advantage to be a grandmother; you’ve already had small children and are now much more patient.”
“They are so tired. You only have to say something and then it goes wrong. It’s like walking on eggshells.” (About the parents)