By Philip Duncalfe
Whether they realise it or not, every new father has expectations of what they want for their child and what they want their child to be like. The most basic kind of expectation that I reckon every father has is “I just want her to be healthy.” The number of times that phrase comes up in one form or another before and after a child is born, is high – too high. I think we even said it at one of our NCT antenatal group sessions when asked what we hoped for our unborn child.
Over the last two years, most expectations I had for my daughter have been gradually shattered. I will never forget the moment when it first really hit me that my daughter’s life would be very different in comparison to children her age. Up to that point there was some part of me that believed the comments, meant in kindness, that went along the lines of “each child develops differently”. One particular evening hit home when Rosalie couldn’t control her hand movements. There is a unique kind of pain when you see your child hitting themselves in the face or on the head over and over again for no reason other than they can’t control their muscles.
Over the next year and a half, until Rosalie was diagnosed, expectations had to change. With each change or realisation, another wave of sadness. Don’t get me wrong, there was joy over this period, Rosalie constantly surprises us with her amazing laugh. There is something about her that attracts other children and she loves being around people. She may be grumpy with her parents, but when other people visit, even if they are strangers, she brightens up and shows off her laugh.
We adore Rosalie with our whole heart, but we hoped that she would be able to experience life in the best ways possible: to be able to crawl, to be able to walk, to be able to show affection. As friends talked about the annoyance of separation anxiety or the frustration of changing lives around to accommodate an exploring child, we had a daughter who didn’t seem know we were around or not. She rarely rolled over let alone explored a room.
I particularly remember being at a church event last summer and seeing two beautiful little girls, one not much older than Rosalie, dancing with each other as the music played. Even before her diagnosis six months later, it was looking more and more unlikely that Rosalie would walk. Fortunately in our church, it is acceptable to be emotional about Jesus so I wasn’t the only grown man crying.
There is a lot more to our story that I will gradually post about, but the video below does a good job of explaining the rest of the journey without me talking about my emotions. Tina took the brunt of chasing up medical professionals, going to appointments, researching symptoms, joining Facebook groups for children with unknown syndromes as she had the blessing/curse of working a three-day week. Rett Syndrome has pretty well taken up the remaining four days. She may well post occasionally here about her side of the journey every now and then.
Rett Syndrome is a devastating syndrome. Shortly after diagnosis, I needed to do something, anything, just to help me process the news. I’m still processing the fact that Rosalie will not have the life I expected and wished for her – I think I always will be processing that. Tina and I debated how much we should share with people, and given how rare Rett is, we thought we’d share as much as we comfortably could. We created a donations page and as we’d already booked in for a half marathon and Tough Mudder we asked people to sponsor us.
Our initial target was £500, we’ve had to shift the target four times since and should probably do it again before Tough Mudder in September: https://uk.virginmoneygiving.com/Team/RosaliesRunners. Since then I’ve had friends and family do their own fundraising and challenges, we’ve made strong connections with Reverse Rett and my school supported them for their Raising and Giving week.
I somehow managed to hold it together while talking about Rosalie to more than five hundred students and staff in the Monday assembly. We are overwhelmed by the support and love shown, it has helped and will continue to help get us through the toughest days.
A lot has happened since Rosalie’s diagnosis though we haven’t shared much about that… I’ll save that for future posts. Suffice to say, my expectations are constantly shifting and we are gradually finding joy in milestones most parents overlook – more on that later. We’re still journeying with Rosalie and I am certain her laugh has become even more contagious than before.