Daisy has had a few trips to hospital, one planned (for a small surgery to remove a lump from her temple and sort out some problems with one of her stomas) and unplanned ones involving the inevitable blue lights and major juggling on my part. Each time a stark reminder that I am on my own in this, in the decision making, in supporting the children. Even in just having another pair of hands to help share the load.
The day Daisy went into hospital for her surgery was also my birthday, another first, but despite everything the children made it fun and we even managed to get home in time to have some cake together.
The day Daisy went into hospital for her surgery was also my birthday, another first, but despite everything the children made it fun and we even managed to get home in time to have some cake together.
 |
| Four children, one dog, a birthday girl and a precariously balanced chocolate cake |
It's been 6 months now, 6 long, busy, lonely months where we can feel Andy's presence everywhere - in shops, music, a shared joke, a football match, a taste, a smell. So many reminders of him. My life continues to be constant plate spinning, the constant busy-ness keeps my mind off things but sometimes I resent the fact that my life is so full on that there is little time to just be, to think about what has happened, to grieve properly.
It's impossible to fully describe how many directions I am pulled in on a daily basis, in some cases, to protect the privacy of my children I also don't want to go into too much detail. Needless to say, as I have always said, my life that I talk about here and on social media is merely the tip of the iceberg.
But I am determined as always to keep focusing on the things that really motivate me - fun times with the family, running (and now also open water swimming) and trying to spread the word about what it's like to be a carer of a life limited child through my writing and speaking.
So despite all of the obstacles life throws in my way, I have still been able to tick these boxes during my time away from the blog. One of the most exciting things that happened was to receive some recognition for being a role model for carers in the UK.
A couple of months ago, Xanthe and I were in the car travelling home from her Art Therapy session at the hospice, I was bemoaning the fact that I don't get to go out and dress up much any more. Almost immediately my mobile rang and I learned that I had been nominated for, and had won, a national carers award and was invited to an awards ceremony to receive it.
So a few weeks ago I enjoyed a very special day, where I not only got to dress up but I also visited 10 Downing Street and met the Minister for Care.
My family became media stars as we welcomed film crews into our home and our story was featured on the national news and in the papers. Even more scary, I was interviewed live on the London news, something I can now add to the "things I never thought would happen in my life" list.
Always on message I spoke to the Minister about the difficulties carers experience accessing respite and fighting for joined up care so that they can be supported in caring for their loved one.
The following week was Carer's Week and some of you may have seen my guest post on Mumsnet. Again hammering home the message that any one of us can become a carer at any point in our lives, it's not an exclusive club, I should know.
In what turned out to be a really busy few weeks I was then honoured to share a platform with Barbara Gelb, Chief Executive of the Children's Palliative Care Charity, Together for Short Lives at an event for Senior Manager at the Department of Health. Again I shared our story and the message that families caring for life limited children need access to a robust community based palliative care service and joined up support so that they can care for their children, keep them out of hospital but most importantly enjoy their time together asa family. It took our family to reach crisis point, with Andy's terminal cancer diagnosis, for us to get the comprehensive care package that helps me look after Daisy and keep her at home, safe and well and being the little girl she deserves to be.
In all of this, I still find time to run and, as I have been attending the running club's coached swimming sessions every Monday I decided to progress to open water swimming sessions at a nearby lake. I am loving my swimming sessions so much that I have invested in a wetsuit ( a birthday present to myself) and have gained a place in the Serpentine 1 Mile Open Water Swim in London this September. Exercise continues to be the way I manage the stress in my life, gain some time for myself and also maintain the fitness I need to manage Daisy's increasingly complex care.
We have also started the process of fulfilling one of Andy's dying wishes. As you know we talked very openly about death, his funeral, his wishes. Some of his last words were to remind me to take his ashes to his favourite places. At half term we travelled up to Scotland, a poignant and emotional journey, last time I visited it was for Andy to say goodbye to his family for the very last time. We honoured his wish to scatter some of his ashes into the water of the Ayrshire coast. A beautiful moment, full of emotion, the sun shone and his ashes sparkled like glitter in the water. Later that evening, I sat on the beach and picked up some pebbles to take home and remind me of one of Andy's favourite places.
Tomorrow we make our annual pilgrimage to Somerset and Glastonbury Music Festival. Some much needed downtime for me, as you can imagine a beach holiday lying on a sunbed is not my idea of relaxation but partying in a field in Somerset is definitely up there with my favourite stress busters. Andy loved Glasto and Cancer didn't stop him enjoying this time at the festival last year and getting there this year was such a focus for him.
I will take a few of his ashes and scatter them on the hill overlooking the festival as the sun goes down and raise a glass to Andy who will no doubt be with us in spirit.
It's impossible to fully describe how many directions I am pulled in on a daily basis, in some cases, to protect the privacy of my children I also don't want to go into too much detail. Needless to say, as I have always said, my life that I talk about here and on social media is merely the tip of the iceberg.
But I am determined as always to keep focusing on the things that really motivate me - fun times with the family, running (and now also open water swimming) and trying to spread the word about what it's like to be a carer of a life limited child through my writing and speaking.
So despite all of the obstacles life throws in my way, I have still been able to tick these boxes during my time away from the blog. One of the most exciting things that happened was to receive some recognition for being a role model for carers in the UK.
A couple of months ago, Xanthe and I were in the car travelling home from her Art Therapy session at the hospice, I was bemoaning the fact that I don't get to go out and dress up much any more. Almost immediately my mobile rang and I learned that I had been nominated for, and had won, a national carers award and was invited to an awards ceremony to receive it.
So a few weeks ago I enjoyed a very special day, where I not only got to dress up but I also visited 10 Downing Street and met the Minister for Care.
 |
| Off to Downing Street and feeling very glam! |
My family became media stars as we welcomed film crews into our home and our story was featured on the national news and in the papers. Even more scary, I was interviewed live on the London news, something I can now add to the "things I never thought would happen in my life" list.
 |
| Me with the other recipients of the National Carers Awards |
Always on message I spoke to the Minister about the difficulties carers experience accessing respite and fighting for joined up care so that they can be supported in caring for their loved one.
 |
| I was very tempted to buy this hoodie I saw in a shop in Glasgow |
In what turned out to be a really busy few weeks I was then honoured to share a platform with Barbara Gelb, Chief Executive of the Children's Palliative Care Charity, Together for Short Lives at an event for Senior Manager at the Department of Health. Again I shared our story and the message that families caring for life limited children need access to a robust community based palliative care service and joined up support so that they can care for their children, keep them out of hospital but most importantly enjoy their time together asa family. It took our family to reach crisis point, with Andy's terminal cancer diagnosis, for us to get the comprehensive care package that helps me look after Daisy and keep her at home, safe and well and being the little girl she deserves to be.
In all of this, I still find time to run and, as I have been attending the running club's coached swimming sessions every Monday I decided to progress to open water swimming sessions at a nearby lake. I am loving my swimming sessions so much that I have invested in a wetsuit ( a birthday present to myself) and have gained a place in the Serpentine 1 Mile Open Water Swim in London this September. Exercise continues to be the way I manage the stress in my life, gain some time for myself and also maintain the fitness I need to manage Daisy's increasingly complex care.
I will take a few of his ashes and scatter them on the hill overlooking the festival as the sun goes down and raise a glass to Andy who will no doubt be with us in spirit.
I still can't believe it's only been 6 months. We miss him so much.
 |
| Daisy waving to Daddy as we sent a balloon up to the stars for him for Father's day |
No comments:
Post a Comment