Many thanks to Sam Radford for allowing these honest words to be shared. I think that many people will see a reflection of their own experience in these words (originally posted on Medium).
It is nearly two years since I first wrote publicly about my struggles with coming to terms with my daughters chromosomal disorder (22q11.2). Eloise is soon to turn seven, and I thought it was about time to try and capture some of my thoughts and feelings again.
People regularly ask me and my wife, Rachel, how Eloise is doing, and its not always an easy question to answer. Where do we start? People dont have time to get the latest lowdown from each of the twelve or thirteen departments we are connected to at Sheffield Childrens Hospital.
So what should we say?
Heart surgery – which she had in 2013 – was something tangible for people to latch onto, but the everyday challenges that have now become our normal are far harder to explain to people.
My temptation is always to downplay everything too. It’s only occasionally, when we have an extended chat with close friends or family and break down all the different medicines Eloise has to take and challenges shes facing, that it hits us just how different our normal is from most other people.
Sometimes I need to remind myself that its okay to acknowledge that its not okay. That what we have to face is not normal. And that, frankly, its really pretty shit that we, and especially Eloise, have to go through all of this.
Ive never been an excessive worrier – Im still yet to discover a single benefit – but I do feel like I now live in a perpetual state of concern. Its hard to describe, but its like a permanent heaviness. I so want Eloise to have the best life possible. I dont want her health challenges to be the defining characteristic of her life. And yet with every moment of pain or struggle I see her face, its like a little dagger stabbing away at my heart.
Sometimes I feel like an awful parent too.
Eloise regularly has stomach pain before bed and it often stops her going to sleep. But like any parent at the end of a long day, with two young kids, you reach a point where you just need to relax, unwind, and enjoy the evening. So, when I hear her small feet pottering down the stairs for the third time and her quiet voice complaining about her tummy, all too often I end up shouting, Just go back to bed, Eloise!.
And I feel terrible moments later. But its hard, because theres so little we can do. We cant magic the pain away. Coming downstairs wont help her. The best thing she can do is stay in bed, try and ignore the pain, and hope to go to sleep.
But shes not even seven years old yet. She shouldnt have to be facing this. Going to sleep shouldnt be hindered by pain. And even if coming downstairs to be with mummy and daddy wont help, she needs to know that shes loved and supported and not alone.
I think my reaction in part stems from my frustrations. I dont want her to have to be going through this and that manifests itself with impatience.
I know I need to get better about this.
I also need to get better at supporting her when it comes to school. One of the potential impacts of 22q is that it can cause some learning difficulties. On the whole, Eloise has done really well at school and is pretty much on target in all the key areas so far. At the same time, there are definitely some areas where she struggles.
And, again, I can find myself getting cross with her. It may be a maths question which I feel she should have grasped already. Instead of patiently helping her as many times as she needs, I often end up reacting as if shes not trying hard enough or concentrating properly.
The truth is, some aspects of maths, due to her disorder, are going to be a struggle. Thats just the reality. But sometimes I find it impossible to empathise with why shes taking so long to grasp some concepts that, in my mind, appear so simple. I lose my patience with her. But more than that, I find myself resentful again that she has this condition at all.
Its then that my mind can end up in a downward cycle of worry. How is she going to cope through school as lessons become more and more complex? Is she going to end up getting left behind? How will that affect her prospects throughout life? And on, and on, and on.
Sometimes I can find myself close to tears just thinking about it all.
Despite all of this though, and so much more that I couldnt hope to cover in this blog post, Eloise is such an immense and wonderful gift. A gift to us as her parents and family, but also to all those who get to know her. She is such a happy soul.
Like any young child, she has her meltdown moments, but she takes all her health challenges completely in her stride. She is a real warrior; stoic in how she faces up to everything. I admire Eloise in so many ways.
Her path through life might not be normal in some senses of the word, but I dont doubt that her life and light will bring so much joy and good into our world. There is so much about her future that I dont know, but I do know that our world is such a brighter place for having Eloise in it. And I want to do everything I can to support and encourage her to be all that she can be.
Posted on 15th January, 2016. Copyright Conor Mc Guckin