As SN families we often wish we had a crystal ball – whether that comes in the form of searching for a diagnosis, preparing for future health issues in advance or knowing how our beloved children’s needs will change, to be able to have some way of knowing what to expect is something we all struggle with at times.
Sam is under palliative care and has been since he was 12 months old.
Many people think palliative care is something to fear, that it means death must be imminent, but that absolutely isn’t the case.
For us and Sam, it means ensuring he is cared for properly and has the correct equipment and/or adaptations and care in place to make his life comfortable, pain free and to allow him to live fully.
The events of this year have burst our little bubble of ignorance as to our sons likely future, his expected lifespan especially.
They have also brought into clear focus how his general health has been impacted by almost a decade of non-stop seizures, aspiration and limited mobility.
And this is where his palliative care consultant has really come into her own.
Once Sam was home and recovering well, we had a long chat about how best to manage Sam's various health issues.
Instead of dealing with his epilepsy in isolation, or his gastro issues, she took a holistic view of our son.
Together, while calm and able to think about what we were discussing, we put together a symptom management plan.
This was then shared with Sam's GP, the children's hospice and is including in his medical notes.
Now, whenever he goes into hospital etc, whether for routine visits or emergencies, everyone knows the plan for what to do in various situations.
Its taken a weight off us as his parents knowing there’s a plan in place and it helps his medical team. Its a win all round.
While I dearly wish things were different, it has already shown its worth. We may not be able to predict the future, but we can certainly prepare for it.