We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood. She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.
Andy's cancer diagnosis has thrown up all sorts of conversations and emotions and taken us to even further places that an average family would not even consider. Now we face the reality that Andy is not going to "make old bones". He's getting amazing treatment and his response so far has been great but the reality is he has stage 4 cancer, it will never be cured, the best we hope for is that for a few years it can be managed as a chronic condition, the most we hope for is time.
So now I face the probability of not only losing a child before they reach adulthood but also losing my partner. To be honest if you think about it too much you go crazy but facing this reality we have had to think of practicalities.
As parents our job is to bring our children up to reach adulthood then see them off into the world armed with the skills for life we have given them, then in all reality our job is done. We just need to stick around long enough to launch them into the world, but what if that doesn't happen. This is my biggest fear, this is the thing I grapple with and the one thing that does keep me awake at night - what if something happens to me? Who looks after them?
It is the biggest fear anyone who cares for a disabled child faces, even more so when that child has a learning disability and needs you to be their voice. What happens if we can't care for our child. At least there are two of us, if, and when, this two becomes one there will still be a parent who knows how to do the medical stuff, who can fight their corner and make sure they are alright. But what if something happens to me?
The older three children will be OK, they are older, they are easier for grandparents and family and friends to take in and look after but what about Daisy? Where would she go?
Daisy needs round the clock care, she has to have someone with her all the time who is IV trained, but who can also manage her other cares and most importantly make sure she is a little girl first and foremost. Who would choose her clothes? Take her shopping, take her to the cinema, on bike rides, make sure she is getting an education, holidays, treats, family time? Where would she go. There are simply no facilities for children with such specialised needs in the UK. Her hospice could only take her as an emergency, The Children's Trust, where she has respite, is moving away from long term placement of medically complex children.
The one thing my life so far has taught me is not to take things for granted - not to assume that things will go according to plan and at least to make plans to deal with the unexpected.
We wrote a will several years ago. This needs to be changed to take into account our new situation and our wishes for Daisy. We need to think about who would be her voice if we are not around, who would make sure she had what she needs and is not shipped off to some far away institution away from her siblings. We need to think about what would happen to our other children.
This is why it's important to have conversations about death.
Let's face it - we are all going to die, we don't know when or how but when your number is up, that's it. So why not make sure that some plans are made. Andy and I have already talked about our wishes for death, we would both prefer a hospice setting if that was possible, because we have had such a positive experience of hospices. Also we are aware that there is greater access to the support and medication for end of life care at hospices than in the community.
Even before the cancer we talked about funerals and our wishes. It's not maudlin, it's practical, it's about getting affairs in order.
There are a growing number of Death Cafes in the UK and the rest of the world with the objective of "increasing awareness of death with a view to helping people make the most of their (finite) lives".
I have often described our journey with Daisy as like being in a car which we know is going to crash, we don't know when or how but the only thing we know is that it is inevitable. For a long time we were permanently bracing ourselves for the impact. The fact that at some point we stopped doing that and began to just live in the moment has equipped us will for the challenges we faced with Andy's cancer diagnosis. By talking about and planning for the inevitability of death we have been able to feel far more in control, we no longer live in fear, we live for today.
Get your affairs in order, make plans, make a will, think about your wishes for death, then get on with living. None of us knows how long we have so enjoy the ride while you have it.