But hey - I haven't sought new paths, new challenges, or a new educational direction, have I?

When you have a seriously ill child, as a parent you are thrown from one day to the next into a reality that is unfamiliar, unsafe and in every way confusing and chaotic.

The grief over the child you didn't get, the anger and frustration at being the one chosen for this task and the feeling on behalf of the child that they have been cheated of a dignified and fulfilling life on equal terms with all other children - these are just some of the emotions that arise immediately after receiving the difficult message from a medical team: 'You have a sick child who will never get well'.

SPLASH and OUCH. A wet rag to the face and a stomach blow all at once.

The foundation disappears under your feet and the thoughts start and never end.

- What do we do?
- How do we do it?
- What will others think?
- Can we stay together as a couple?
- Will we lose our child?
- What if our child outlives us, who will look after and care for our child?
- There simply must be some doctors somewhere in the world who can help!

But there is no cure or medical treatment that can heal, and that's why you're slowly starting a new life on completely new terms.

You are now well underway with your new involuntary education:

  • Parenting a child with special needs.
  • The thoughts and reactions to a serious message are natural.
  • People react differently and it's important that we allow each other to process grief individually, as long as it's respectful of others.
  • Some people need to cry, others need quiet time to reflect. Some may need to shout, some may think 'We can do this together', while others may lose their courage and mood.

ALL reactions are natural and okay!

Don't spare the people around you - sooner or later you will find out who in your circle of friends and family is ready to be there for you in your grieving process, to listen, comfort and take an active part in your new life circumstances.

We at Team VALE are still 'in training' but sincerely want to be a shoulder if you need one!
Let us know if there's anything you need to share.

Hugo Perdigao
Tagged: Awareness