We are not sad

I recently watch a video where there was a family who have a son with Down Syndrome and, as a little toddler, he was diagnosed with Acute Lymphoblastic Leukemia, a grave illness. The outlook for this family is tough, their son is on palliative care and they live day by day but they spout joy and happiness. In this video, they were asking the speakers advice on how to strengthen the spirit in their other children and renew them after living through a number of difficult years.

The speakers words (in Spanish to English translation) were – “we can suffer, we can cry – but we cannot be sad”

He said many more things including how they were setting an example to their other children on how to live life with joy even in difficulty, but this particular part – about how moments of suffering and tears of joy don’t equate to being sad – resonated with me the most. Because it is so true!

No matter our situation, and we ALL go through trials in life – days of heartache, months of apprehension, years of exhaustion – for whatever reason. But really as a whole, life is full of richness. People often mistake our message when we talk about the hard parts of watching our child suffer, but they are just individual, temporary moments. Rest assured – we are not sad.

When it comes to having disability and illness diagnosed within the family, we spend many nights in anxiousness. We have times where we don’t know what is around the corner and we worry a lot – but we are not sad.

Our hearts ache as we watch our children suffer immensely; through surgeries, invasive tests, countless needles, medical induced trauma and awful hospital stays – but we are not sad.

We can be embarrassed when someone stares or we have awkward encounters and comments that portray judgement for our choices – but we are not sad.

We may have our work cut out for us in toilet training, toddler years and discipline – but we are not sad.

We have to work a little harder to get out and about with our kids and sometimes get frustrated – but we are not sad.

We may ourselves feel tired and stretched from hospital stays, specialist appointments, countless therapy sessions and slow progress – but we are not sad.

All parents have moments of exhaustion, anxiety or stress at some times in our children’s lives – but there is always reward around the corner. The times of hardship and the times of anxiousness, they don’t amount to a life of sadness. All the suffering is punctured continuously with unimaginable joy, with heart-bursting cuteness. Moments filled with even more pride in little achievements.

Part of the reason we find these times so difficult is because we are full of such great love. Without love for our children with Down Syndrome we would not be so full of anxiety and stress about the pain our babies experience, nor have any fears for their future. It’s often because there is great LOVE that can make it hard.

Our kids show us how to slow down and be perfectly simple. We are happy.

We have learnt how to appreciate little things most take for granted – an attempt at a babble, clapping hands or being able to drink from a bottle. We are grateful.

We ponder the miracle that is the human body, a perfectly designed machine. We are in awe.

We are more likely to notice people who are suffering than we were before. We are more aware.

We spend more time investing, growing and loving our marriage since having Raphael. We are fortunate.

Our kids with Down Syndrome show us that life is about time spent together; much less about milestones, designer clothing and success. We are free.

We watch kids like Raph on movies, ads and Instagram videos and we know he has great potential. We have hope.

There may be tears and there may be pockets of pain. But when people watch us, when they walk past and look a little closer at Raph, I always notice my head lift a little higher with pride. By choosing to fight, we’ve made the best choice for him – to have life. There are lots of emotions that come with disability, but I promise you, sadness is not one of them.

Our babies are our babies first. They are a life, not a label. They bring unique happiness like every other child in the family – more than that – we experience life in a way that is less common, that not many experience. We are lucky, and we are certainly not sad.

The speakers words (in Spanish to English translation) were – “we can suffer, we can cry – but we cannot be sad”

He said many more things including how they were setting an example to their other children on how to live life with joy even in difficulty, but this particular part about suffering but not being sad resonated with me the most. Because it is so true! No matter our situation, and we all go through trials in life – days of heartache, months of apprehension, years of exhaustion – for whatever reason. But really, as a whole, life is full of richness. People often mistake our message when we talk about the hard parts of watching our child suffer, but they are just individual moments when we cry. Rest assured – we are not sad.

When it comes to having disability and illness diagnosed within the family, we spend many nights in anxiousness. We have times where we don’t know what is around the corner and we worry a lot – but we are not sad.

Our hearts ache as we watch our children suffer enormously; through surgeries, invasive tests, countless needles, medical induced trauma and awful hospital stays – but we are not sad.

We can be embarrassed when someone stares or we have awkward encounters and comments that portray judgement for our choices – but we are not sad.

We may have our work cut out for us in toilet training, toddler years and discipline – but we are not sad.

We have to work a little harder to get out and about with our kids and get frustrated – but we are not sad.

We may ourselves feel tired and stretched from NICU stays, specialist appointments, countless therapy sessions and slow progress – but we are not sad.

All parents have moments of exhaustion, anxiety or stress at some times in our children’s lives – but there is always reward around the corner. The times of hardship and the times of anxiousness, they don’t amount to our life being sad. All the suffering is punctured continuously with unimaginable joy, with heart-bursting cuteness. Moments filled with even more pride in little achievements.

Part of the reason we find these times so difficult is because we are full of such great love. Without love for our children with Down Syndrome we would not be so full of anxiety and stress about the pain our babies experience, nor have any fears for their future. It’s often because there is great LOVE that makes it so hard.

Our kids show us how to slow down and be perfectly simple. We are happy.

We have learnt how to appreciate little things most take for granted – an attempt at a babble, clapping hands or being able to drink from a bottle. We are grateful.

We ponder the miracle that is the human body, a perfectly designed machine. We are in awe.

We are more likely to notice people who are suffering than we were before. We are more aware.

We spend more time investing, growing and loving our marriage since having Raphael. We are fortunate.

Our kids with Down Syndrome show us that life is about time spent together; much less about milestones, designer clothing and success. We are free.

We watch kids like Raph on movies, ads and Instagram videos and we know he has great potential. We have hope.

There may be tears and there may be pockets of pain. But when people watch us, when they walk past and look a little closer at Raph, I always notice my head raise high with pride. By choosing to fight, we’ve made the best choice for him – to have life. There are lots of emotions that come with disability, but I promise you, sadness is not one of them.

Our babies are our babies first. They are a life, not a label. They bring unique happiness like every other child in the family – more than that – we experience life in a way that is less common, that not many experience. We are lucky, and we are certainly not sad.


To read our introduction and background story of our son and life with Down Syndrome, click here

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