We thanked the ambulance staff, the anaesthatist and then we were left alone with the palliative care doctor, the nurses and a couple of staff members at Claire House.
I stroked Zack's head, whispered how much I loved him, kissed his face. Scarlett, and (I will write about sibling grief at a later stage) hugged him, upset and afraid. She later told me that she told him she wasn't going to leave him and she would stay with him until the end. Again, I can't cover this here, but I need to say the bravery that it took for this little girl to go through what she did still takes my breath away.
Afraid. Frightened. Worried. Terrified. Panicked. Anxious. These adjectives are only a fraction of an expression about how we felt during the period of time that Zack deteriorated. It completely knocked us off our feet up when we accepted he was dying. I think the words a doctor used were "he is actively dying and has been for some time."
I'll do my best to try and be clear about my thought process. As Zack got sicker and needed longer hospitalisations, it slowly began to sink in that one day and at this point we didn't know it would be so quick, but one day he would leave us. We would have to make decisions about what care we wanted for him during the end of his life.
When you come to this stage of caring for someone with complex needs there begins discussions about Advance Care Plans.
I had never even considered an Advance Care Plan for Zack, occasionally I would read on forums for parents of special needs children that they had them in place including DNRs (a do not resuscitate order). I would think how could you ever get to that point, why would you choose to do that? But that is where Zack's journey took us. And thinking back now, all the ups and downs of his life, all the hardships and difficulties were nothing compared to this last part of his time here on earth.
We began to consider an ACP during one hospital admittance, when it was suggested by a doctor that maybe we should begin to discuss this with his consultant. We met with a community nurse not long after who kindly brought round the form that we would need to complete so that we may look at the questions before we arrange a meeting with his consultant to discuss.
The ACP covers our wishes in the care and treatment for Zack. It can be changed at any time and is usually written with guidance and help from other professionals. Effectively it is specifically asking as Zack was nearing end of life what care we wish to have provided for him. I won't go into all the ins and outs as we never got chance to complete the form. But there were areas covered such as how much intervention we would want for Zack, whether we would want him to be put on a ventilator, whether we would want him resuscitated. What was important to Zack, what would we like him to be able to do, where would we want him to be looked after during end of life. Even his funeral. I know, as if, as a parent you should be thinking about this, but realistically and pragmatically for some it helps for other parents it doesn't.
Our thought was that whatever happened the most important thing for Zack was his quality of life. If he wasn't going to improve by medical intervention, if we were keeping him alive artificially then it would only be for our benefit not for his.
As I write this I still can't fathom how we even got to this point, how we were able to make these choices for him. I feel incredible guilt that I let him down, that there could have been more I could have done. Yet as I look back and remember the number of times his body was pumped full of IV antibiotics, his stays in hospital, the need for oxygen. How he struggled through the last months, each time getting a little worse. I knew I couldn't let him down any further, we had to let him go. I look at those words, let him go. How could I? How did we?
All the doctors said that there was no more that could be done for him. But was there? If I am honest I feel that I let him down. People will tell me we didn't, doctors tell me we did everything we could he just couldn't battle any more. I know logically what they say is true, but as his mother, I will always carry the feeling that I didn't save my baby, I didn't protect him. Perhaps that guilt will always stay with me.
