When we set out on this venture to celebrate grandparents and their impact on the lives of grandchildren born with a difference, I had a vague idea in my mind that some kind of guide would be useful.
When we received the news at our 20-week scan that Hero would be born without her right hand I trawled the internet for information on what I should do. While I discovered a wealth of information aimed at parents, nothing seemed able to fully answer my question: What the hell should I do?
I realise now that there was no answer to be found; because there is no right thing to do. There is no right way to react. You might feel elation that there isn’t something more serious wrong. You might feel utter grief at the loss of your ‘perfect’ ideal. You might feel terror at the idea of what the future may hold. You might feel excited about the possibilities and opportunities that lay before your child. You might decide to tell the world, or you might hold the cards close to your chest. You might want to consider surgery, or prosthetics for your child; you might shun all adaptations. All of the above, and much more beside, is OK. Everything you’re feeling, or felt, or will feel, is perfectly ok! There is no road map and, as Lewis Carroll once said, ‘If you don’t know where you are going, any road will get you there‘.
That’s one of my favourite things about the wonderful Reach community, and the online circle of the Lucky Fin Project: no one judges. If someone said that they wanted to pursue the option of surgery for their child, then those that had decided strongly against it wouldn’t even think of casting aspersions. I wonder if that’s because we ‘get it’? We get that there’s no such thing as ‘the right thing to do’, there is only the right thing for you. Any road will get you there, after all.
As I spoke to the families of children with a difference, it became very clear to me that the same thing goes for grandparents. What is the point in putting together a ‘go to’ guide for grandparents, when what works for one person, might be the worst idea for the next? And so I decided to dig a little deeper. I spoke to an NHS expert, who spends every day helping families to come to terms with differences. I spoke to grandparents, including Hero’s, to find out what the experience of finding out about their grandchild’s difference had been like for them. I spoke to parents from within the Reach community to find out what parents had done to help them through the harder times.
In the last post we touched upon the emotional reactions and turmoil faced by grandparents when they find out that their new grandchild or grandchild-to-be has a difference. Like an iceberg, which carries so much more hidden beneath the surface, I feel like I barely scraped the tip of people’s experiences.
We explored the double layer of grief, where the worry for their grandchild is overlaid with and exacerbated by worry for their own child. One thing we didn’t mention, which I regretted the moment I hit ‘publish’, was how, for some grandparents, there can be an extra twist of pain as their child’s experiences can bring back memories of difficult events surrounding their own pregnancies and birth traumas.
“It was particularly difficult for my parents as they relived their own experience of when my brother was born with Down Syndrome. Their treatment back then was appalling and I had no idea how hard those days had been for them,” a Reach parent told Though She Be But Little. “They didn’t want us to go through the same thing they did. In many ways the whole experience brought us even closer together.”
In part two of this two-part series celebrating and guiding grandparents, I wanted to put together all of the amazing advice I received. As a result we’ve compiled an ‘almost’ top ten tips (9 to be exact!), based on professional advice, and a wealth of personal experiences that stretch far beyond my own. I wanted to take a moment to celebrate how grandparents have made an astonishing and heartwarming impact, and perhaps share some of the things that were less welcomed by struggling parents. I wanted to create a little space on the internet for grandparents to find a pocket of acknowledgement and maybe even a little encouragement and hope tailored just for them.
1. Open the conversation. It’s too easy to shy away from people in a difficult situation when you don’t know what to say. If you’re not even sure where to begin, our specialist advises grandparents who visit her to simply acknowledge their shock. This can be a great place to start, as shock is usually something everyone in the situation can relate to. If you’re not sure what to say from there then ask questions. Ask how the parents are feeling and what they are thinking.
“My main bit of advice to grandparents is; please don’t ignore it!” a Reach mum told Though She Be But Little. “ My mum didn’t know what to say to people at the beginning and she wouldn’t bring it up if she wasn’t directly asked about it. On the other hand my mother-in-law is so happy to show people her [granddaughter’s] little hand and just says: ‘nothing’s wrong with it, it’s her hand.’ That’s an attitude I love!”
“My in-laws took the stance of not saying anything to us at all. We had very few phone calls and very few visits. I know some people deal with things this way, but at the time I found it really hard,” another parent told us.
2. Be present. Sometimes simply being there, even if it’s just cooking a meal or making a drink, is enough. Alternatively, if they need space to process and grieve, let them know that you’re there for them and be ready to pick up the phone when they call.
“Useful things that other people did was just bringing food or soup, offering to shop, putting the washing out,” one Reach parent told us. “Just listening without judgment is quite a skill, but a welcome one!”
“My mum was so supportive with the emotional side of things. She also got hold of a midwife to support me,” another parent said.
3. Listen and take an interest. Sometimes there is nothing else to be done but just to listen. Listen to your child’s worries, their fears, their hopes and celebrations. Listen to the feedback following the few or the many medical appointments. Sometimes just showing an interest in limb difference in general can be a huge support for a new parent and it helps to normalise this whole new world.
“Our parents were all really supportive – they merely sat and listened to us and let us talk our way through how we were feeling and what the future will hold,” one parent reflected.
4. Acknowledge that your feelings might differ from your child’s, and accept that that is ok. Our specialist encourages grandparents to try to accept the feelings they are having as their own. She advises grandparents to avoid any attempts to force your child to feel better, or perhaps even to worry more, if their current feelings aren’t in line with your own. Just allow the emotion to be – that includes theirs and yours.
“My mother in law found it very difficult and would get upset about it quite a lot even when I was being positive and optimistic,” one mum told us about the days and weeks following their scan.
5. Research if you want to, but beware of what you do with the results. Turn to the internet (as you most likely have already, if you’re reading this!). There is a wealth of information out there about limb differences, of which Reach and the Lucky Fin Project are just starting points.
“My parents were amazing! They did lots of research but filtered it initially while we were dealing with the emotions,” another added.
“My dad looked at research and ways forward. He came up with suggestions about robotics and stem cells and even contacted professors at universities to ask for their suggestions about current medical research,” one mum told us.
It is essential to be aware that your grandchild’s parents might not be ready for the information yet and that too much information might not always be welcome.
“My mother-in-law Googled a lot and was telling me the bits that, initially, I didn’t want to hear. I now know that most of that scary information didn’t even relate to my daughter! I found that approach hard sometimes as I wanted to deal with my feelings and come to terms with it before going deeper with the information,” a Reach parent explained.
6. Be guided by the parents and be consistent. Once you’ve acknowledged your feelings it’s really important to be guided by the parents in the early days and months (See the ‘Circle of Grief’ in our previous post). Allow yourself to be guided by them and use the language and explanations that they do. Even if that means avoiding words you’d rather use (for example, I absolutely loathed the word ‘stump’, and couldn’t bear anyone using it around me!).
You can say what you like in private, but stick to the rules around your child and their baby. By having a conversation about language early on you can ensure that you are all responding to questions consistently and modelling the best responses to your grandchild, our expert suggested.
7. Avoid the blame game. When something difficult happens it is natural to look for blame, be that looking inwards to yourself or your family, or outwards to others, our expert explained. Unhelpful comments that I received in the early days included the suggestion that I had somehow caused Hero’s difference because I had had anxiety during pregnancy and had worried too much! Another parent told me that someone had queried whether her baby was missing his forearm because she’d gotten pregnant a little later than society suggests we should. Neither true, nor helpful! Neither of these suggestions have any basis whatsoever in science, neither to do they offer any support or positivity to the parent or to the child. In many situations when a child is born with a limb difference there is no genetic cause and the medical opinion is that it is simply ‘one of those things’. Even if it does turn out that there is a genetic link, where thoroughly exploring the medical causes could be vital, directing emotional frustration and blame upon any one individual or family could have catastrophic results for family relationships, our expert cautioned.
8. Don’t forget to celebrate! Once all the dust has settled and the feelings have calmed, you’ll be left with a beautiful, wonderful and a uniquely perfect little baby. Try not to forget that fact and celebrate accordingly when it feels right for you and your family to do so.
“With some visitors I didn’t feel like they celebrated that I had a brand new, gorgeous baby, but maybe I was just paranoid!” one mum explained.
9. Reach out. Discovering that your grandchild has a difference of any kind can feel isolating. Following on from the ‘Circle of Grief’ theory that we mentioned in the previous post, it could be a real burden for your child if you turn to them for support. Try as much as you can to pass only support inwards to the centre of the circle, and to pass your own grief outwards to your own support network.
“I remember walking out of the hospital sobbing; all I could think was that my son would be bullied for being different. Thinking back now, my mum was actually really upset by that prospect too, but she never let her emotions show that day,” a grateful Reach mum said.
With the advent of the internet we no longer have to feel isolated, so if you’re feeling any kind of doubt, struggling with your feelings or just want to help others who’re going through what you have, why not reach out?
“My parents and my in-laws actually phoned each other for support, unbeknown to me at the time, so that they didn’t need to burden us with their worries,” one mum said.
If you’re in the UK, contact Reach and see if they could put you in touch with any other grandparents who’ve been through the same thing. If you’re not a lover of the internet, then I’m certain there will be Reach members who would love to meet up for a chat or to talk on the phone. If you’re based elsewhere in the world, why not try the Lucky Fin Project who already have a thriving following of international grandparents?
You could also join the brand new Though She Be But Little Grandparents group on Facebook. It’s a private place where grandparents going through the same thing can talk to one another, share their worries and celebrations and ask questions, without fear of being judged or overheard.
The above post and tips have been based upon the collective advice from numerous Reach and Lucky Fin Project families, as well as UK-based medical professionals. This ‘guide’, which is in no way comprehensive, was written to support grandparents and wider family and friends of any child born with a difference. However, it is not intended to be definitive or to marginalise any differing viewpoints or opinions.
Are you a Lucky Fin grandparent: What advice would you give to someone going through a similar experience?
You can use the comments section to share your advice and experiences around the birth and the raising of your grandchild. We are stronger together!
I would like to extend a huge thank you to all of the families who took part in the interviews and shared their personal and heartwarming stories and photos. Thank you also to the Lucky Fin Project and to Reach. I would also like to thank our specialist contributor and the other medical experts who have contributed to this article.