Palliative Journey…
Today I had one of those bad days that can come at anytime and completely throw you for the rest of the day. Usually for me it’s after a few weeks of being nonstop when I have a few days to myself and the dark thoughts take over. Sometimes it can be brought on by a certain smell, memory, tv clip or advert, anything really. This time I think it was due to our first family trip out since lockdown.
This week we went to Woburn safari park and it was amazing, but also really difficult. When you have two children under 3 it’s tough, but when you throw in tube feeding, a hyper toddler and a hot sweaty little baby it all gets a bit crazy. Feeding Amelia in the back of the car, stuck between two car seats was difficult. She was doing so well but I could tell she was uncomfortable.
It felt so good to be out together just the four of us, however I think subconsciously this led me to have a minor breakdown today. As a family we cant just up sticks and do what we like for the day. We have to plan for everything and work out breaks, where we can feed Amelia. Is it clean? is it safe? I remember the days when we could just grab a few nappies, wipes and snacks and off we would go, but that is not possible anymore. It’s hard to watch the world carry on and friends and family carry on with their lives whilst our whole world has completely changed.
It all just hit me today, I woke up fine, did a workout and then it all came crumbing down. Tears were flowing and I felt like I couldn’t breathe. It was almost like an out of body experience as I felt like I couldn’t really move. I couldn’t physically motivate myself to do anything, it’s like the world stops and I’m just stuck, crying and unable to escape.
This is just part of the palliative care journey, nursing your child through is the hardest and most unbearable experience, one that I never thought I would ever have to go through. When you find out your child has a life limiting condition it’s completely heart-breaking and scary. We didn’t believe it at first, we didn’t want to believe that our child would leave us. How? How could anyone tell us that our child had this? They didn’t know her, what she was like, her little face and her delicate hands. How could this beautiful little angel come into our lives and then ultimately be taken from us?
Then the reality of the hospice sinks in and you start to notice that your child isn’t like other children. You can’t just go to a normal baby class, it’s too dangerous, you feel left out and people won’t approach you as they never know what to say. We couldn’t get through any of this without Keech. They do so much for us and we don’t feel alone. Whenever you mention the word hospice you immediately think of end of life, (I did). However a children’s hospice is different. Yes the inevitable will happen but you never know when, so a hospice will provide you with care, help, and a place to go. Your nurses turn into your friends and become part of the family. Since covid, I have really missed being able to go there and see other mums who go through the same daily battles and struggles as me. Penelope is able to socialise with other children in the same situation and everything feels safe. Covid has really affected families like mine and I really cannot wait until we can start going back there. Just to have some form of normality will be amazing. A palliative journey is very lonely and I have found speaking to other mums who are going through the same thing or have been through it really helps. I love my friends and family but it’s hard for them to understand.
At the moment it’s like we are living in an abyss. We know what’s coming but we are just stuck waiting. Trying to enjoy the time we have but plagued by the fear of knowing that at some point in the future we will have to go back to being a family of three. The thought of that sends shivers down my spine and I wonder how on earth we will explain this to Penelope. One day her sister will be here and the next day she will not.
I’ve been diagnosed with PTSD and I understand this will not be going away for a long time. We all just have to try and get through these awful moments and try our best to live in the moment and be present. We are only at the beginning of our palliative journey and we know what will happen at the end. Enjoying this middle part of our story is bittersweet. Trying to be present and know that its ok to have bad days. Just the fact that we are all together will give us the memories we will cherish for a lifetime.