More Than A Photo

Updated: Aug 27, 2020

Today Oliver is five months old, for us this is an important stage. His bother Joshua had monthly milestone photographs, like many babies, and we had added notes of his developments to enhance the memories. However, when it came to writing Joshua’s milestone achievements for month five, it became clear that he had not reached any and in actual fact had regressed; Joshua had lost the skills that he had previously acquired.

We had noticed ‘symptoms’ of illness in Joshua from 4 months old and this clear regression became an alarm. It was thought by many professionals to be due to viral illnesses, as Joshua had contracted bronchiolitis and then chickenpox, we were told to give him time to recover. As time passed it became clear to us that we needed to be heard, our boy was unwell.

We took Joshua to see a health visitor, Alex shared our concerns and rather than excuse the symptoms to a virus, as many others had, she contacted the consultant paediatrician immediately. Within a matter of two days we were told that Joshua had experienced brain damage, he would await scans to evidence this. I sat through the whole of this appointment taking in all of the information, my son had brain damage, how could that be? I didn’t cry, I asked questions, what will life look like for him? I wrote notes, I listened. We left the room, got in the car and I broke down, I screamed and I sobbed my heart out. At this point, Joshua’s diagnosis was not ‘life limiting’ but as you can imagine, our world had changed; we were thrown onto a different path, one that we never thought we would have to take. It brought many hospital appointments and lots of anxiety, questions, etc. We did not know what the future would hold for Joshua, would he walk, talk, etc.? I knew that I had to be resilient, my children needed me, from then on I took the view that though we didn’t have any answers, we did know was that our love for Joshua had not changed, it was strong and whatever the extent of his disabilities we would encourage him to reach his full potential and enable him to exceed the stereotypes, he would live inclusively and be loved.

Our path took a different turn, we were dealt a devastating blow the week after Joshua’s 1st birthday, Joshua had a metabolic condition (undiagnosed), he had weeks, if moths to live, he passed away aged 15 months. Joshua certainly made an imprint on many hearts during his short life.

So as I share this photograph of Oliver aged 5 months old, I share it alongside Joshua’s last milestone photograph. I feel a small sense of relief, relief knowing that Oliver has reached a milestone which may enable us to believe that he is here to stay. When Oliver was born, his sister Sophie, now age 5 asked ‘Do we get to keep this baby?’ A question that no sibling should have to even think, and a question to which I had to provide an honest reply, ‘I don’t know but we really hope that we do.’

This milestone photograph is more than just an image, it means that we can try to relax a little, we can try to live as a ‘normal’ family without being consumed with the fear of history repeating itself, we are able to enjoy this stage in Oliver’s development without the need to feel ‘on guard’ and we can look forward to another millstone month!

Happy fifth month birthday Oliver, we love you! x

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