Rebecca is the kind of woman who makes the decision not just to ‘cope’ through challenges, but to face them with resilience and positivity and embrace the transformative impact they have on her life. She is a woman I have long admired and I always appreciate her pragmatic and thoughtful views, as well as the proactive work she does in making a difference in the lives of those around her. I am blessed to know her and am thankful that she is sharing her words with us here. Thanks Bec. ~ Annie x
When I wrote about our son Ryan last year, he was only four years old and had faced more medical challenges than anyone should have to in their entire life, including leukaemia, a cleft palate, heart defect, and vision and hearing issues. In April this year we welcomed a new baby girl, Ciara, to our family, making Ryan a big brother. Having another child after you’ve had a child with a disability or major medical challenges seems to raise many questions in other people’s minds and certainly we also faced some fears in making the decision to add to our family.
Many people asked if I’d have prenatal testing this time around. In its kindest form this question was expressed with curiosity and allowed me to think through my own views. At its worst, it was stated more as a fact ‘so you’ll have prenatal testing this time’, implying we should have learnt a lesson by being so blasé about the whole thing the first time! It was a good question (although a bit intrusive from relative strangers!) and one that I did put a fair bit of time into thinking about.
I’ve never had any testing for Down syndrome during any of my pregnancies. Before I had Ryan it was a decision I made very deliberately, reasoning that it wouldn’t change the outcome of my pregnancy and could potentially just add unnecessary worries. I believe everyone has value and I’m really uncomfortable with the thought that parenting involves trying until you get the child you think you want rather than loving and being grateful for the child you get. Then we had Ryan.
Before I became pregnant with our latest addition, I did wonder if I’d want to do testing just to know. My only regret about having Ryan is that the day he was born I wasn’t nearly as happy as I should have been. A lot of the first weeks of his life were spent worrying about what his diagnosis meant and pulling my crystal ball out, thinking about all the things he’d never do. It didn’t take long before I realised that my fears were based in ignorance and my crystal ball didn’t work very well. After he was born I wondered if a prenatal diagnosis would have let me work through my fears and become better informed before he was born so that I could have experienced the absolute joy his birth deserved.
So when we were planning on having another baby, I did consider whether or not I’d have any of the tests just so that we could plan and move past the fear before our baby was born. It took a while, but I finally realised that even if this baby did have Down syndrome, I had changed – ignorance was the cause of my fear, and my ignorance is gone forever. We didn’t end up doing any testing this time either because I realised I didn’t need it. I’d joyfully welcome another child with Down syndrome into our family. I knew that if this baby had DS, I’d simply spend my time marvelling over how delightful a newborn is rather than worrying about what school our baby would go to or whether she’d ever be able to drive a car.
People with and without children with Down syndrome asked me if I was scared we’d have another child with a disability. The logical part of me finds it slightly funny that this is something people assume is more likely for me now than it is for anyone else. While it’s true that having a child with DS raises the probability of having a second child with the condition, at almost 40 my age related likelihood was almost equivalent anyway. Even knowing this, it is something my husband and I did discuss extensively while deciding whether or not to go ahead with baby number three. I won’t try to represent his views on this but, for me, my views of disability and life in general have changed a lot through Ryan and the contact I now have with the special needs community.
We had always wanted another child and, as our discussions went on, I realised that I wanted and would welcome that child regardless of disability. If you told me I could only have a third child if the child was guaranteed to have a disability then I would have still have wanted that child. I don’t see disability as the tragedy that I would have thought it was before I had Ryan. I also realised I’d be the first person to put up my hand to adopt a child with DS if there was a need. It seemed to be a bit of a contradiction to think I’d happily adopt someone else’s disabled child but wouldn’t choose to have another baby with a disability myself. As many women who’ve had babies could tell you, I knew in my heart this baby didn’t have DS early in my pregnancy. She felt so completely different to Ryan and much more like being pregnant with our first daughter, Orla. This many sound a bit ridiculous but part of me was actually slightly disappointed and a bit scared – Ryan was such a happy, cruisy baby; slept well, ate well, really affectionate. I wasn’t sure how I’d go managing a ‘typical’ baby again! Luckily I’ve scored another easy going one (with 46 chromosomes this time) so I needn’t have worried.
There is no joy greater than watching your children fall in love with each other. I remember watching Orla fall in love with her little brother. Her absolute acceptance of him as being the best brother in the world just because he’s her brother. Her excitement at being a big sister. It was really delightful. And now we get the joy of watching Ryan fall in love with his little sister and it’s no less delightful. He adores her. I go away with her and when I come back, it’s her he runs to; she gets five kisses before I get my first. She’s still only little and fairly breakable so we have to supervise everything very closely. This a big job because every single time we put her down he runs straight over to her, climbs on top of her for cuddles, leans over her head and smiles right into her face. She’s sensible enough to be slightly wary of all the love but it’s easy to see she adores him too. She laughs at his antics and grins away to get his attention. We can already see that Ryan and Ciara will be the best of friends. In Ciara, he’ll have the playmate he needs at a time when he’s really ready for her. Our older daughter Orla is a lovely mix of mother, sister and therapist but, being a couple of years older, she has already moved on to a different level of play. She plays with him as the older child actively trying to engage the younger but not as equals playing at the same level.
Before I was pregnant, I wondered if it would hurt to see Ciara catch up to Ryan. At the moment all I feel is excitement for them both in anticipation of it happening. They’re going to have the best games. I expect she’ll understand his speech better than anyone else in his life. We’re teaching her sign language so she’ll be able to communicate with him and with us quickly. I fully expect there’ll be plenty of naughtiness in this house in the next few years, no doubt with Ciara telling us ‘Ryan did it’ (which based on his current level of wildness will no doubt be at least half right).
Having Ciara has meant so many things to us, it’s hard to summarise in just a few words. For me, she’s healed some of the hurt of the special time I lost with Ryan in the first weeks after he was born. It should have been just the two of us bonding, and instead it felt like I was a new staff member at our hospital managing my new patient’s care. Watching how easily Ciara is able to achieve milestones has been a revelation. Even though we’d already gone through the milestones of a typically developing child with Orla, now we have our knowledge and experiences with Ryan to compare with. Some of the things I see her ‘just do’ I remember spending months working on with Ryan. While we take the same delight in her achieving her milestones as any parent, watching how easily they come to her has made me appreciate just how hard Ryan works. If anything I admire him even more. He never gives up. Absolutely everything has been a challenge. It would have been a challenge anyway but add cancer and a heart condition and all the rest and it really is amazing what he has achieved in the last four years. There is nothing less about his experience. It’s hard to describe the thrill of achieving a milestone that literally takes months of therapy and persistence. I’ll never forget the pride on Ryan’s face the day he started walking. He walked for hours yelling out ‘me so cute, me so clever, me can walk!’ at the top of his voice. It was wonderful! Having Ciara has really allowed me to step back from our current list of priorities to truly appreciate how far he has come.
Life with three children certainly involves a new level of chaos, as all parents of three or more kids will tell you. Is it harder because Ryan has Down syndrome? Is it too much to cope with, particularly on top of all his medical issues? These are definitely realistic fears and questions I had people ask when we discussed having another child. Parts of it are probably harder. Ryan had open heart surgery when Ciara was four months old, so we packed up and moved our family to Melbourne for a couple of very intense weeks. I still take Ryan to Melbourne for medical appointments very regularly and, since Ciara was born, that means taking two small children with me. I’d be lying if I said it is easy, but it’s not so hard that it’s unmanageable or that it takes away from our happiness. And, like everything in life, it gets easier with practice. We survive and sometimes we even have fun doing it!
I would never have chosen for Ryan to have to face the medical challenges he’s had. I wouldn’t take Down syndrome away if I could choose, but I’d take the rest of it away in a heartbeat if I could. Having said that, the whole experience of parenting Ryan has given me a very precious gift – the awareness that I can handle anything and I can thrive even in the most difficult circumstances – and that’s very powerful knowledge to be blessed with. And knowing that, the decision to have baby number three was a no brainer. One thing in life can be guaranteed – it won’t be easy. No doubt there’ll be tough times ahead, but one way or another I can handle it and it will absolutely be worth it. For us, adding the joy of a third child to our family more than compensates for the extra challenge. And having been through Ryan’s cancer we’ve learnt to really focus in on the happy times, to take our joy and just ride out the hard bits, waiting for better days to come.
Rebecca lives with her husband and three children in Tasmania. She is an environmental scientist who enjoys the many benefits of working from home, including spending most of her days wearing ugg boots and being interrupted frequently by little people. She also enjoys the luxury of a full-time stay at home husband who’s handy in the kitchen and takes control of the mountains of washing generated by her family every week. In her spare time she is the Vice President of Down Syndrome Tasmania and is enjoying taking on a variety of volunteer roles to support families of people living with Down syndrome.