Are the clanging chimes of doom
Well tonight thank God it’s them, instead of you
REALLY??? We’re thanking God that someone else is suffering and we are not?? But actually it’s not that unusual an attitude. I remember reading a facebook post from a parent of a child with additional needs in one of the many groups I’m now in; it was something along the lines of ‘I visited a children’s cancer ward today, and seeing what those children and parents are going through makes me really glad that we’re not, and that my child is so much healthier than them’. I get it. I get that looking at other people’s hardships can invoke a sense of thankfulness for your own life, and being thankful to God is never a bad thing. But I do think we can try and get to a place of thankfulness and joy without the need for comparison to what other people are going through. One main reason is that in comparing we are making a gross assumption of how the other person is feeling in their situation. Are those living in poverty in Africa definitely more devoid of joy and love in their lives than the celebrities singing the song? Are all the kids on the cancer ward (and their parents) miserable with their lot in life and have no hope or happiness? I honestly don’t know, so why do we assume we know what’s going on inside someone based on their external situation?
I used to make similar assumptions when I saw someone in a wheelchair or with obvious learning difficulties. I would feel sorry for the them and their parents for their lot in life. But the truth is I had no idea of what their life was like. Now I do have more to do with children with additional needs and their parents I see that they are just as mixed a bag as everyone else! Sometimes I see parents still struggling to come to terms with diagnoses or difficult behaviours, parents despairing at their child’s constant illnesses or simply fed up with the appointments and equipment that fills their life. But mostly I see families full of joy who honestly wouldn’t change a thing. And I am really really glad to be able to count myself among them. I would never have chosen to have a poorly baby, but it has taught me so much. I appreciate Dan more having seen how strong and committed to his family he is when he lived almost like a single parent to Lauren for much of seven months last winter. Having myself been away from Lauren for this same time I now take much more pleasure in spending time with her and growing to know her more. And I realised that I am also capable of more than I ever realised. Izzy is an amazing daughter and so loved- I would never want anyone looking at my family and saying ‘well thank God we don’t have that to deal with’, so why would we do the same to others? I actually had the opposite experience recently where someone with a daughter with a greater developmental delay due to an unknown disorder was clearly envious that Izzy has something which so much is known about (Down Syndrome). It just helped me realise how unhelpful it is to compare to other’s situations. There will ALWAYS be someone in a ‘better’ situation than you (at least in the world’s eyes) and someone in a ‘worse’ one.
Now when I see parents of a child with health or learning difficulties, I can give a genuine, not awkward, smile, and honestly tell them their child is beautiful. Instead of pity for the parents I have respect for them, knowing something (though very little) of what they will have been through to get to this point. But you don’t need to have walked the same path as someone to stop making assumptions of what someone’s life is really like and being open to the idea that a hard life can be a happy one. I am of course not talking about when someone IS clearly struggling or has come to you upset or open about their pain/depression/stress. Some people with hard situations of course are struggling, but until you know that there is no need to assume.
I’ve just finished reading the book ‘The Lucky Few’ by a couple in America who have adopted three children, two of whom have Down Syndrome. Both children with Down Syndrome needed open heart surgery, and you get to see how going through it the first time prepares them to have a different experience the second time. In the book they share the conversation they had while waiting for their son to come out of surgery, and it really echoed how I’ve been feeling.
‘I wish my twenty-four-year-old self could see this and know how good it would all turn out.’
‘Or maybe understand that just because circumstances are hard, it doesn’t mean they are bad.’
Harder doesn’t equal worse. It can, but it doesn’t have to. Similarly, healthy doesn’t equal better, and an unhealthy baby can bring just as much joy and love to a family as a healthy one, as I’ve been discovering. So why, when asked in pregnancy if I wanted a girl or boy, did I tell people ‘Oh I don’t mind, as long as they are healthy’. If I didn’t actually say this myself, I certainly have certainly heard it from other pregnant friends and nodded along. I know that most people don’t actually mean anything negative about the prospect of having a poorly baby when they say this, but the implication is still there. ‘As long as they are healthy’. What if they’re not? Will you not be overjoyed by their birth? Will you not love them? You see what I’m getting at (hopefully). When I mentioned this to a friend recently she suggested a better phrase might be ‘I don’t mind, I’m just so excited to meet them’, and I thought that was lovely.
We had agreed that when Izzy was born I would choose her middle name, though we were pretty sure it would be Grace. As soon as I found out her diagnosis I feel that God showed me how much joy she would bring to our and other’s lives and I knew her name was Joy. However, I was unable to tell Dan for about a week, since every time he asked me I burst into tears, filled with a whole range of emotions from across the spectrum! Eventually, though, we were able to properly give her the name that really does sum up her life so far. Even in her worst of times (apart from when sedated) Izzy has continued to infectiously smile and giggle in the face of adversity, and show the world that she is not after anyone’s comparisons or pity.
Having said that harder isn’t worse, it’s important when supporting others to remember that harder is still harder! Even if someone’s life is full of joy, the things that make it hard still have an emotional and practical impact, and make it necessary to have more support in place. I have so much more help than I ever thought I would need, both professionally (e.g. respite workers helping with Izzy), paid for by us or family (nursery, cleaner) and provided freely through friendship (prayer, and more practical help than I can list). All of this gives me the time and energy to enjoy my family, and I know I am incredibly blessed to have this level of support. I hope that my experiences will help me to replace feelings of pity with a more active desire to help other families reach a place of being able to enjoy each other and God even in hard situations (and I am well aware there are MUCH harder situations than ours).
I am a 31 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 5 years and typical, and Izzy, 3 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.
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