We’re okay. No really.

I get asked all the time how I’m going, and whilst it’s pretty typical small talk, I find the question is often loaded.  I get the feeling people are expecting me to be tired, overwhelmed and emotional – the question comes with a slight tilt of the head and empathetic sigh, a searching for cracks in my mental state.

It’s kind of people to care, it’s kind of people to check in, we have two babies after all and that’s no walk in the park. But some days make me wonder, is it the twins…or do they think we’re grieving about our son being born with Down syndrome? Is that what’s behind the sympathetic looks?

In talking with a mother recently she admitted that sometimes she feels bad talking about her own sons health issues with people, because “others have it worse.” I wondered, does she mean Down syndrome? Because we don’t feel worse off.

We learned about our littleJ’s extra chromosome when I was 17 weeks pregnant. It was a hard process coming to terms with our fears and prejudices, but we did. His birth was welcomed, he was celebrated. But if you only saw us in the midst of our grief trying to understand and learn about his diagnosis you may be mistaken in thinking we’re still there.

This is not a coping mechanism, we don’t have to convince ourselves of anything, this is not just a mother’s love…we have genuinely come to a place of growth in our hearts where we accept and love our son as he is. In the process we are coming to accept and love others who often struggle to find inclusion and acceptance. Did you know that almost 20% of Australians have a disability!?

Raising children comes with so much uncertainty, we don’t want LittleJ to struggle socially or endure health complications, and whilst Down syndrome may increase the chance of certain health complications, the syndrome itself is not a disease or illness, it’s a genetic condition – so we don’t pray for LittleJ to not have Down syndrome…our prayer is that he will be healthy, happy, and safe. We pray that people will see past what he might look like, or what he can’t do and embrace the person he is, whatever that may look like.

 

What is Down syndrome?

“Our bodies are made up of millions of cells. In each cell there are 46 chromosomes. The DNA in our chromosomes determines how we develop. Down syndrome is caused when there is an extra chromosome. People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.

Although we know how Down syndrome occurs, we do not yet know why it happens. Down syndrome occurs at conception, across all ethnic and social groups and to parents of all ages. It is nobody’s fault. There is no cure and it does not go away. Down syndrome is the most common chromosome disorder that we know of. One of every 700-900 babies born worldwide will have Down syndrome” (Taken from Down Syndrome Australia).

 

 

5 thoughts on “We’re okay. No really.

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  1. I think sometimes parents who have children with “health issues” often use the phrase “others have it worse” as a simple coping mechanism, not as a judgement. I honestly think we don’t compare situations but merely use it as a “tool” to remind ourselves that situations can always be harder than what they are 😃
    You are remarkable and all of your kids have hit the mum jackpot with you ❤

  2. My son has a hearing loss- not completely but enough for hearing aids and I often think it can’t feel sad about it because others have it worse’ or if I tell people I say ‘it’s ok though it could be worse’
    Sometimes I find it hard to have to remember hearing aids and the battery’s and having to travel for appointments and wait in between information..always getting asked questions by the people who have to look after him.
    The sad looks people give me when I say it’s permanent…
    I feel bad he doesn’t get the full hearing life but I try to also tell myself that I could be worse. It’s a good and bad thing I guess for me…

  3. It’s so hard when we have to see our little ones struggle with something so many others don’t, and it’s a form of gratitude I think to see that it could be worse and to be grateful it’s not :). When our children struggle with health issues we become more aware and empathetic towards other families coping with health issues too, and it’s good to become more grateful for the good things we have. I guess with LittleJ because Down syndrome isn’t a health concern, he’s quite healthy, I don’t find myself heading down that line of thinking, if anything I feel so blessed to have a child with an extra chromosome 🙂 x

  4. Also – if you’re interested in learning any key sign or know of any resources/training I’m very keen to learn and would be happy to do it with you! x

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