We spend many of our waking hours flying the flag for those who are different, not better or worse, just different; we champion every milestone no matter how small because we know the effort and determination that went into achieving it.

And we know that our children are as beautiful, as wonderous as every other child in this world.

It is still hard however when the Dr’s have to add another label to our child’s medical file.

Seriously, you can tell when Sam’s notes arrive because they arrive on a trolley, all by themselves!

There are a lot of notes for my boy, folks.

Really, a lot.

Most of Team Sam as they are nicknamed have been with us since the very beginning.

We have added a few new names fairly recently to that Squad of medical specialists and I will not lie, it has been difficult to accept that.

Until recently we have carried on happily enough, seizures have been pretty stable and his height and weight continue to behave beautifully.

But as he’s grown his low tone is causing more and more issues that need to be dealt with; scoliosis for one, which we know will be progressive.

Increased saliva production (hypersialorrhoea) has recently caused more issues so a new medication was added in.

As parents, we are grateful that these issues are identified swiftly and dealt with to keep our boy safer for longer; but don’t for one-minute think that we don’t sob into the darkness when everyone else has fallen asleep.

Today while filling in yet another form which asked for a list of Sam’s issues I picked up his most recent hospital discharge letter and at the sight of that ever-lengthening list of co-morbidities I fell apart.

For the first time in a long time the anger and pain overwhelmed me completely.

So much to deal with for such a little boy.

And yet, so many others face the same battles day after day, and I am lucky to still have my boy with me.

So, as I have done so many times before, I put back on my armour and push the emotions down as far as they will go.

Now is not the time to cry.

Now I have to fill in this form, applying for funding to make my boys life better; and that is far too important to allow emotions to get in the way.