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I felt really silly today.

I have spent the last two days catching up on things like special needs dentist referral, tube feeding supplies, wheelchair van application and so on.

The main issue I have had is re-ordering Amy's acute prescription as she has recently started a trial of two different medications.

For some reason this has proven incredibly difficult and over the last two days my call log states 38 calls have been made or received. No exaggeration.

Granted a lot of them are leaving voicemails or line busy... but regardless of this, I have spent a lot of time trying to resolve things that should be simple.

Today it all became too much and when I dropped Amy off at respite I burst into tears.

Real, full blown, I can't cope, frustrated tears.

Of course everyone totally understood and they see the battles we so often face.

Sometimes we internalise the stress for too long and it builds up until we can't take anymore.

I was ushered into another room, offered a drink and sat with a member of staff who was so understanding.

She did the one thing most of the people on the phone failed to do - she LISTENED. She EMPATHISED... and most importantly... she took action.

She went away and dealt with the issues for me.

On my last exasperated call before crying I stated to the other person "PLEASE, do not keep telling me what you cannot do. Just tell me what I need to do to fix this."

Sometimes all it takes is one individual seeing your plight and either comforting you or coming to your rescue.

Like I said at the start though. It is all a matter of perspective.

Now that I have purged that emotion and had time to refocus and calm down - none of those things matter anymore.

Sometimes I can be so positive and pro-active, but other times I am totally knocked to the ground and devoured by how much I have taken on.

I guess what I am saying is... I know I am not alone in this.

I know for a fact as I have a few close friends in a very similar situation who will call me and have a good rant or cry about it all.

Sometimes I can become so negative and so depressed, that someone will actually turn everything I say on its head and make me rethink how I feel.

I recently got upset about the fact I need so much help and support.

But then I was reminded of how much we have going on and how we have become so used to this life that to me it is normal, but to an outsider they would be in awe of how much we all contend with.

And just like that I felt better.

For me, not being able to access the services I need, or acquire a medication I know we need... this feels like I am not providing for my daughter.

Being tube fed means a huge part of the nurturing aspect of parenthood has been taken from me and I think in some ways I have tried to emulate that through my giving of medication or doing therapy as I know this is helping her feel comfortable and happy.

When this is denied to me I panic and get angry... when I get angry for some reason I cry.

I don't like conflict or shouting at people so I suppose crying is my only outlet for that frustration.

It takes a lot for me to cry... it can take days or months of things building up for me to finally blow.

Today was that day.

I didn't want to be one of those "new year new me" people, but I do think I want to be a "new day new perspective" me.

We need to be kinder to ourselves.

On those hard days (which I find often coincide with school holidays when responsibility levels peak) it is okay to have a good cry or scream into a pillow.

As long as you surround yourself with the right support network and eventually pick yourself up off the floor, dust yourself up and come back fighting.

Firefly Blog

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

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

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