Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

When the list of labels just keeps on growing

When the list of labels just keeps on growing

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 for such a little boy to deal with.

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.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

View Carolyn’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...