When a daddy isn't well

This is the bit people rarely talk about. 

When a parent with young children has a debilitating medical condition, that has come on over time or suddenly, and the effects on the entire family.

Our 9 year old son burst into tears this evening, all of a sudden. I wasn't sure what triggered it but I knew he was feeling a lot. After gentle questions while my arm wrapped around him, I deciphered the puzzle. His daddy, who is recovering from Covid (we all are), was having his muscle spasms. A lovely but sad song had just played and our son just had all the feels in that moment.  Sadness, upset, drain, uncertainty, worry. 

When a parent becomes ill, roles seem to reverse a bit. Children become carers, sensitive to the needs of others around them. At first, I was really concerned. Wishing our kids didn't have to go through this at all, and thinking about how difficult it will be for them to cope.  After living in it for a while, I recognized that it might actually be our family's superpower, adopted out of necessity. 

I'm a firm believer in life experiences being a useful tool in later life, if and when others we know start to go through a similar experience. 

Navigating others through difficult life journeys, when you have no experience at all, is a minefield. 

I really appreciated when I could chat about cancer with friends who had been through it and who had lost their parent to this awful disease. So now, almost 6 years later, I've found myself supporting others as their family members steer and veer through their cancer journeys and otherwise. I feel more powerful because of my own valuable, valid experiences. Hopeful and confident that my friends know I understand a measure of what they are going through. 

Sharing is not easy, but as we go along, we need to share. It's essential for coping. Without a hand or a shoulder, we can dive blindly into choppy waters and feel helpless while trying to tread. Humans need each other. It's how we're created.

So from our little family to yours, please know we get you. We try not to dwell on the negatives but we choose to be open and honest about our experience, in the hope it helps another family. Let's all do this if we can. It can be quite cathartic. 

Chicken Bakes & Snow Days

Jude has just woken up. It's almost 9am and he doesn't know it yet, but it's a snow day today (in March).

In he comes for a cwtch and I ask him if he has looked outside. 

He looks out, gets all excited and as he leaves the room, he says "Yesterday and today have been really good days. Yesterday, I got chicken bakes in the freezer!" 🥰 Easily pleased. 

He's now getting dressed for snow. 

I think we've lost our 10 year old to snow this morning and I'm totally okay with that. Home ed can wait. 

Mindful Fireworks - a moment of clarity.

Half through my counselling sessions and feeling thoughtful.

I've recently been more aware of my high anxiety, and have take some steps to help myself through it. Medication is helping, makes it a bit more bearable, but it's not the answer. I am. 

Accepting help, being vulnerable and feeling in the moment are things I struggle with. Mind races, thoughts rewire, control fades and left breathless. Brain spirals and changes a good moment into a wobbly moment without notice. 

Feeling under pressure to keep up with others leaves me drained and balance is rarely my first port of call. 

Last weekend, I accepted a spontaneous offer of an evening out with friends, new and not so new. Miss T and I travelled over 40 minutes to a light sandy beach under a pink and blue blanket. We ate delicious chips, spent time with lovely company and good conversation. Fireworks lit the sky after dark and we enjoyed the moment with many families scattered on the sand. 

My phone is full. No memory of this evening but I thought "last session, I was reminded to live in the moment and let anxiety leave. Friends will take photos, I can always ask for a copy" so I did. I checked that my daughter was safe and nearby, my handbag was tucked in by my crossed legs, and I sat still... facing the pops of colour in the air, sand in my hands and peace in my heart. 

It was so good. I didn't stress about the carpet fittings, new extractor fan, moving day, heavy lifting, the carpark queue, the drive home in the dark, work the next morning. 

I just sat still. 

Need to do that more often. T had a great evening, loved every moment. I had a lovely time. This moment was a moment to remember. Simple, sitting still, feeling the moment. 

I'll come back to this post when I need a reminder, in the hope that I etch it into my mind for future reference.

In the moment. Mindful and possible.

Shopping with Miss T.

Had such a funny moment yesterday. Had to record it for future reading. 

T and I arrived at the Co-op to get a few bits. I got out of the car and went to the boot to get shopping bags out. 

T came around the back of the car and exclaimed "Oh you remembered bags!" and almost immediately (and completely incidentally) started singing "For the first time in forever" (song from the movie Frozen). I roared laughing 😆 She had no idea why I was laughing. I had to explain while giggling. The perfect timing. 

Love her, our fab almost 13 year old 🤣

Still not used to it.

I found this blog, looking lonely in drafts. 

Reading it gives me all the feels again. I've come a long way. It's now 4 years and 9 months since we lost Mum and I still have my moments, my memories and my meltdowns. There have been nights where I have sobbed myself to sleep. It's been a while since the last time that happened, but I remember being inconsolable.

One thing is for certain though, it hasn't been boring since 2017. 

We moved country with Grandad so he would have the best care and we would have a home closer to family too, losing Grandad unexpectedly 3 months later (at the ripe age of 100 years, 10 months) wasn't easy, a global pandemic followed, along with ill health, missing my Dad and our favourite people, my lovely husband was unwell and eventually was diagnosed with a debilitating and rare neurological condition, my Dad moving country (closer to us), I chose to change jobs as I'm needed closer to home now and we're still home educating,  which is going really well. 

It's been full on, silly busy but I feel stronger for it, so I want to share my hopes and my goals with you too. I'll let you in after you have a little read of my lonely draft:

"Feeling vulnerable is not something I like to feel. Last week, I felt so emotional and stressed about different things and on Tuesday, after the children went to school, I broke into tears. Wanting my Mum.
It's been 15 months since Mum passed away and while it doesn't weigh on my mind every second, thoughts of her come to mind pretty much daily. She was a good listener. Even if she spoke a little soon at times (I get that from her, I guess), she was really good at being there as a listening ear, giving practical advice and sharing a kettle. I really appreciated her in my adult years, more so after I gave birth to my babies.

To me, my close family are my security blanket, my go-to when I need a hug or a cuppa. Not wanting to be a burden is a big feeling for me but I'm thankful for them being there and not giving up on me, and hopefully not being disappointed with me."

To continue, I still feel similar but I have more life experience and self belief under my belt. Living in a new country, closer to my husband's family and now my Dad is living closer to us again - it all reminds me that:

1) my Mum isn't here and she'll be shocked when she finds out what we've all been coping with;

2) family truly is everything;

3) home is where my little family is;

4) we really can set up home anywhere and we'll be okay, we'll keep our great friends and we'll make some new great friends but noone will be replaced, it'll just be a little different (on that note, I really need to improve on my communication with friends);

5) most importantly, we can achieve anything when we put full faith in our best supporter, our Heavenly Father. 

Remember, family is everything. 

My hopes are that we find our new balance soon, including ways to celebrate the wins more often and exclude any worry or upset relating to unnecessary external pressures.  We do our very best with what limits we have. A resilient team. A force to be reckoned with. 

Little funny moment to remember in years to come

Yesterday evening, our son was playing in our bed, going under the quilt and shouting "sumbarine"...(yes, he is saying it wrong). I asked him to go and get a book so I could read to him before bed.

He quickly replied "I can't, I'm under water!" 🤣

It happens when I'm gardening...

(Wrote this last weekend... )

I have started gardening as a form of personal therapy. It's working out well and hasn't cost a fortune... yet...

But I have noticed that memories come back to me while I'm gardening. Still to decipher if that's a good thing or not. It might be.

Two days ago on Thursday July 19th 2018, I was at work, planning ahead and checking the calendar. I spotted the date and thought "why is this date ringing a bell?" I couldn't figure it out at all and I never thought to ask anyone.

Had a lovely busy day yesterday at a family wedding. Beautiful day, Friday July 20th... still couldn't figure out about the day before. 

Today, Saturday July 21st, I'm digging a border in my back garden. Hopes and dreams are swimming around in my head... and it dawns on me. July the 19th, Thursday this year in 2018, was Wednesday last year in 2017... the day we followed my Mum's coffin in the hearse, Garfield too, down the dual carriageway, through the Jack Lynch tunnel and towards the crematorium. Garfield was the cuddly toy we didn't need anymore. Mum got a kick out of its goofy face and big eyes, Garfield kept Mum company in her hospice room for her final weeks and was there when we went to say goodbye, the last time. The memory of Garfield is one that lightens the mood, puts a smile on my face but also gives me that feeling of finality. In order to move on and mourn the loss of Mum, I'm glad we let Garfield go with her on her final journey.

In a way, I'm grateful the date didn't stick. It may not hold much significance in the future either. And yet, the day passed by quietly - another first for my family and I.

The welcome distraction this week - my cousin's wedding - is significant, however. Much better to focus on the positive of July 20th 2018. A happier occasion where our family once again reunited and bonded. A day I hope to remember more often in the years to come and may well do so if I keep up my gardening therapy 💞