The long summer holiday. Obviously I use the word "summer' in the loosest sense of the word as I have resorted to firing up the woodburner and digging out my winter boots on more than one occasion this summer as we enjoy the ups and downs of the British weather.
Thanks to the "on this day" function on Facebook I receive daily reminders of previous summers. Last sumer when Daisy developed shingles just before I was about to go away for a much anticipated school reunion and how she bounced back as only Daisy could so that at the eleventh hour I could make it. The week's break Andy, Jules and I took in Southwold when Andy was recovering form his SIRT treatment - sitting together on windswept beaches, plenty of shots of all the lovely food we consumed that week.
Going a lot further back there are even pictures of all of us on holiday together. When Daisy was stable enough to travel and life, though complicated, was not as complicated as it was about to get.
And there's the pictures of the last blissful holiday that Andy and I took together, without children, before he was diagnosed with cancer. A baking hot week in France where at times it was too hot to sit outside and evenings were spent walking in the cooler evening air and enjoying the local hospitality. Our older two children were at home busy with summer jobs and neighbours checking in on them, Jules was away for a week on summer camp and Daisy was staying at her beloved hospice.
We hoped for more weeks like that together, reclaiming some time on our own at last as the children got older and with the unsaid knowledge that at some point when Daisy was no longer with us we would have so much more time together as a couple. When we switched off we dared also to dream about days when we could venture further afield without having to worry about rushing back early because of a medical emergency, to be able to switch our phones off, to just have some quality time together. We knew what the reality of that meant, but then we had always dealt in reality and understood that with so much going on medically with Daisy she was not going to live to old age (in fact I lived in constant fear of having to transition from children's to adult services as she was so complicated I just did not know how she would be supported in a far bigger adult system).
Of course you know the story.
That holiday together was our last. Those dreams died with Andy. At least after he died I could pour my energies into Daisy.
Last summer was hard, not only was I a single parent, grieving for my husband, Daisy's health was clearly deteriorating and every day was more and more of an effort for her. Respite was never rest for me as I fielded phone calls or cut short plans because of Daisy's changing medical needs.
Living with the constant adrenaline of caring for Daisy kept my mind off the reality of my life, that this was it, Andy was no longer here and we were no longer able to share the emotional and physical load of caring not just for Daisy but for our other children.
The house was always full of people too, nurses, carers, delivery drivers. Meetings with professionals were held at my house and I rushed around making coffee for everyone. The phone was always ringing, there was always someone at the door. There was always someone to talk to.
Now the house is quiet. No constant background soundtrack of Daisy's ipad, no night nurses to chat to and catch up with. The older children retreat to their rooms, they have their own lives, they go out with their friends. I have to be careful not to lean on them too heavily for friendship but be there when they need me.
It's hard seeing my friend's facebook posts of family holidays. My family is disjointed now. Xanthe, Theo and I went to Glastonbury together, Jules, Xanthe and I have just come back from a trip to Scotland, Jules and I will go to Suffolk for a break soon. I went away on my own for a week. In hindsight that was a bad idea. I enjoyed the solitude but I craved company and familiarity of silence with your partner, just knowing another human presence is around but not needing to make small talk.
When you have been part of a couple for so long it's inevitable that your friends are all couples. The few single friends I know have been single for a long time and have established their networks of friends and support. I'm new to this game. I envy my friends who are now free to go away without children as Andy and I had planned, who are getting the time you dream of when the children are little.
I'm negotiating a new path of single parent life, the summer is dragging as I try to fill the days. I feel guilty if I take my friends away from time with their own families to spend it with me.
I'm not even a "proper widow", the sort you read about in fairy stories as a child, the stereotype widows who have grown up children to take them holiday, widows are old enough to go away on Saga holidays - I'm not even old enough (or quite frankly ready enough) for that, widows have other widow friends the same age....(obviously this is not reality but when you are in your blackest moments and railing at the unfairness of it all this is how you think)
I'm going to have to learn to be single at a time when I wanted to kick back and enjoy being a couple. I'm choosing to return to work part time later this year year get some structure and routine back into my life, I'm forcing myself to get out and be sociable , I no longer have the excuse of having to stay home with Daisy after all.
I think I will plan next summer better, it's only been just over 6 months since Daisy died after all. Next summer maybe I can persuade the children to have one last family hurrah in the sun before they all go their different ways.
In the meantime I'm looking forward to September. For most mums this is because the children go back to school. Two of mine will - one to her final college year, one to his GCSE year. For me it's about having a routine back, it's about not having the stark reminders of the life I have lost.
Next year, the year of a significant birthday, I will embrace the new chapter, this year I am still reluctantly trying to say goodbye to the old one.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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