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Overwhelmed. That sums up my last few weeks and months pretty nicely. I have been thinking a lot recently and so desperately wanting to get articles out onto the blog but time has not been my friend in recent weeks. Caring for Marley has taken a lot of time and everything else has just had to wait.

The importance of the blog to me has become quite clear from receiving messages from other parents finding support from an article or appreciating one of my YouTube videos. Which got me thinking, a lot, a hard task for a brain my size! I started thinking more about the things that affect me as a mum with a child with special needs, and how many of them are probably quite similar to other parents out there.

So as I sit here writing this in the dark as Marley sleeps soundly next to me, I want to see the ripple effect start to occur. Create a voice for parents of special needs parents in the Algarve and also in other areas. Start making change happen. I don’t know the best way to make change happen but I figured a start would be to express some feelings. I am 99.9% sure there will be other parents out there who can relate to some or if not all of this article. I can’t give you the answers but maybe you’ll be able to relate and feel comfort from that. Reach out and contact me with your confessions and thoughts, let’s become a pack of fighters. A group of warriors is far stronger and louder than one!

I want a guide book...

There are so many feelings and emotions I feel on a day to day basis and now so more than ever I am much more emotional than I ever have been. It’s strange though, I’m overemotional over the silly things. Bursting into tears over dropping something on the floor or putting a top on back to front. Ridiculous but the truth. Then with the bigger things I’ve been told I appear quite cold. It’s a coping mechanism I suppose and I can’t say I’m very aware of doing it.

I feel under a huge amount of pressure every day. Do the right thing, say the right thing, find the best kind of treatments, and always be positive but realistic... The list is endless. Most of all a huge amount of pressure to be the best possible mum I can be. I often think I wish I had a leaflet given to me when I had him. What to expect when becoming a mum of a child with special needs. A checklist of everything that will happen, what you will need and the future steps. But that’s impossible. I wish I had one to show me the right road, guide me through the best decisions and the most effective ways to do things. The truth is you need to find acceptance that no one knows what’s best, but most people will give it a good go!

No filter

The amount of judgement I have had is really incredible. So many people have an opinion far more valid than mine. Everyone knowing best for my son... A friend told me at dinner one night not long ago, ‘Kate you really have to learn to tell people to mind their fucking business.’ She’s so right and I’m getting better at it, a good example is this very article. It does affect me though and makes me paranoid if I’m doing the right thing but I try and remember most opinions are because people care.

In Portugal especially you come to love the brutal confrontation of the Portuguese. They have an incredibly direct way of telling you if you have put on weight, lost weight, look cold, tired or just in general pretty shit. Believe me they’ll tell you. But it’s about taking it with a pinch of salt and realizing that it’s just an expression of love and care with no filter attached. To be honest my best friends are mainly Portuguese and their way of saying it how it is has come to be what I love and value most in them.

And then my issue with being incapable of asking for help. My friends have started to really get irate with this. Everyone is always saying how I need to take better care of myself and ask for help where it’s needed. I never accept it though and I can’t even explain why. I suppose I just like getting on with things, keeping my mind occupied and distracting myself a lot with being very busy. This isn’t advice though as it isn’t healthy! Definitely something I need to change.

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We always get priority given to us in supermarket checkouts and I think I’ve offended some people by reclining it. There are a couple of reasons, firstly whenever someone points out we have priority and tries to push us through it’s done with some kind of imperative like it must be obeyed. But mainly because there are people who do need to pass a checkout and can’t wait – people in pain or someone pregnant needing a wee. But please respect my decision of teaching my son how to wait. He needs to appreciate nothing in life comes easy and what about him makes him incapable of waiting to pay for our bananas? Nothing. Patience is a virtue I want him to understand too.

One thing I need to learn myself is being more conscious of talking about him when he is in the same room like he isn’t there. The whole hearing deficit and global damp doesn’t mean he can’t understand everything and I’m becoming more and more aware how much he picks up on. I really have to try and work on that.

It all stems from the fact I feel completely consumed by him. I hope other parents can relate to this. My feelings towards him and caring for him feel really overpowering at the moment. Like I can’t think or talk about anything other than him. My thought processes ever rolling which interrupt ‘normal’ interactions considerably. The longing to have a conversation about anything other than health but finding him coming right back into the forefront over every coffee or lunch time.

Creating her identity

Then comes the battle of structure. Watching amazing bloggers ‘day in the life’ and literally feeling like I may poo in my pants if that is the way a typical day is meant to be. I feel exhausted at the same time of feeling like I’ve done absolutely nothing. Clothes piling up, dreading doing dinner some nights or just really wanting to find some time to write. I think it’s all normal but it is so frustrating wanting to get so much done but feeling like you’ve done bugger all!

My real internal struggle at the moment is with my daughter. Giving her enough time and attention and splitting myself between the two. I know she needs more time with her mum but Marley is so needy at the moment it is really hard. I need to help her create her own identity. Since she was born she has been the sister of... the translator for... the best door opener... I need to find ways to help her create her own self as ultimately she needs to be her own person.

I’m rattled with guilt that I don’t take them out more especially her. Recently it’s been nearly impossible to leave the house. My plans revolve around whether its wheelchair friendly or avoiding situations or places with noises I know will set him off. Possibly trying to get out of meeting someone who gets offended by Marley not saying hello. That has been embarrassing recently. So I opt out sometimes but to be honest I really don’t care. I have enough complications at the moment why create more?

Deflated boobs and hibernation

Another consumption of my whole being is the daily battles with larger authorities such as schools and hospitals. This is something I want to discuss in more detail another time. Certainly therapists, hospitals, school meetings, pharmacies are just a snippet into where my life went. It’s like I awoke one day and puff... I’m not sure quite what happened.

If I look in the mirror I really wonder where I went to. The nice size 8 (yes that was a long time ago) body, boobs that didn’t look like deflated spaniels ears, hair without the lightning bolt of grey... Don’t even get me started on my conversion from heels to trainers or sexy dresses to sweat pants. In some ways I really miss that girl but then I remember the positive changes I’ve made in myself since those years. Still spanx and a good bra don’t go a miss!

I’ve recently started exercising again to try and resemble something that doesn’t look like it’s surfaced from hibernation since 2011... When I actually go I feel great – but it’s a rare sighting. I’m trying really hard but I do need to be forced to go. When Marley starts to feel a bit better I’m hoping I’ll have a bit more motivation. I feel almost selfish for wanting to exercise sometimes. That along with my love of a glass of wine and Italian food isn’t going to help bikini goals for 2018.

Here's to you!

The future terrifies me. With progressive diagnoses and illness I think it terrifies any mum. It feels some days like a looming cloud following me waiting to burst and is really hard on his bad days. I need to be strong though and try my best to have faith.

The whole ‘I don’t know how you do it’ is, excuse my French, absolute bullshit! All parents have their own battles be it whether their children have special needs or not. No one is better or stronger than anyone else. We all deal with things differently and there is no reason to compare or compete. There is no choice but to be the best you can be. Stop comparing!

Trying to understand him more whilst learning about myself as a mother and an individual... Making sure I try not to shelter or underestimate, or overestimate for that matter. Patience... Consistence... Battles, hurdles, accomplishments and ultimately love.

I take my hat off to all you parents, you are all super heroes to me. Join the club and here is to you!

Check out Confessions on our YouTube channel!

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