So, we have our meeting coming up with the Consultant to discuss Zachariah’s advanced care plan and I am a bag full of emotions, a huge one being confusion. 

I feel so armature and far too close to Zachariah to be making such huge decisions regarding his care when he becomes close to the end of his life.

I mean, what Mother and Father want to speak about such things when their son is only 2 years old, let alone write actual answers down on paper.

It’s a heart-breaking and almost impossible task to do.

Despite this I feel it would be a wise thing to start talking about and get our thoughts and feelings on the table now to try and avoid Tim and me finding out how differently we both feel when it’s too late.

In addition to this, I feel it may be good to get it over and done with, lock it up and only get out when the time comes and leave the professionals to follow the plan leaving Tim and I to be with our Son 100%.

As I write this I hear how bonkers it all sounds, my son is upstairs asleep in bed, (well when I say asleep I mean shouting himself to sleep!) and I am downstairs planning what to do when the worst happens.

But is there ever a right time?

My mind is telling me to plan ahead with a straight head and think logically whereas my heart is telling me to make no plan and just fight in every which way you can to keep him alive when that time comes, and then my Motherly instincts are telling me to allow my son to go when he is ready and hope that it's as peaceful as possible.

You can see how torn apart I am, my heart is breaking that this is even something we need to be doing.

I just hope that as my husband and I sit down to discuss tonight we naturally sync and make the plan as easily as possible and we can find peace with our decisions, as nothing is ever set in stone anyway, things can always be altered.

One of the things to discuss are the funeral wishes we have, and this is definitely something I want to plan now, close the book and forget about.

As this is something we don’t need to make life or death decisions about.

It is, out of it everything, something we can make positive and special, we can take Zachariah’s personality and make an absolutely heart-breaking day into a day to remember Zachariah for the cheeky, smiley, bubbly boy he is.

Now I really do sound bonkers!

For some of you, this may sound ridiculous, but for families like mine, this is reality, the reality that our sweet, precious boy has a life limiting condition that cannot be taken lightly, but is also something we learn not to dwell on.

Thank You for reading this, it wasn’t easy to write, as I sit here with tears streaming down my face, and I imagine it wasn’t easy to read either.

Please feel free to contact me if you are also going through this process, there may be comfort found speaking with someone who understands.

Much Love xx

Things you might like

Check out the Playpak

The portable activity kit. Fun therapy at home or on the move

Find out more
Survey icon

Is your child continent and aware of when they need to use the toilet?

Other articles you might enjoy...

Special Needs

“Are You Okay?” - The Question Special Needs Parents Always Answer With a Lie

A good friend of mine looked me straight in the eye a few weeks ago and asked me…

Special Needs

“Doctor, Please Just Let Us Try” - Raising a Child with a Disability

As a parent of a child with extraordinary needs the one thing I would like to tell…

Survey icon

Public Opinion…

Does your child still wear nappies? If 'yes' is this to prevent accidents when out of the home environment?