There was an article I read a while ago, which was shared all over the special needs community. PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?
It was validating, I guess, but not super helpful. The main point is that the ongoing strain of the special needs life causes intense stress resulting in PTSD. There was a comparison that treating PTSD in special needs parents was similar to treating it in service members engaged in active combat.
However, the ‘how to deal with stress’ or PTSD advice was low on the ground, or as the article put it: there are ‘financial or logistical barriers’ to carers receiving care.
And I get that. I don’t know when I’m meant to fit in self care in Mikaere’s day (don’t tell me the line about how important it is, because I don’t want to hear it – I already KNOW it. Not knowing how important it is not my problem). Truth: I also don’t have the funds for the care, or the funds needed to pay for a nurse while I go to do whatever it is. Just as a comparison: I have had my hair cut exactly twice this year, both times when I was away without Sam and Kai, that I saved up over MONTHS for. If I can’t manage a haircut while taking care of Mikaere I couldn’t see myself managing regular therapy.
(Side note: I want to clarify that we get couples therapy through our hospice, specifically to tackle bereavement and the special needs life. Our therapist comes to us so we don’t need to worry about care for Mikaere. It’s also paid for by our hospice, which we’re grateful for. But a session every few weeks is helpful when you’re in a safe space and maintaining, but in our life too much happens for us ever to get to the ‘maintaining’ part of things. We’re always tackling the next crisis).
Thing is, I cycle through the occasional periods of ‘I’m fine, look at me do all the things’ with the debilitating downsides of extreme and chronic grief and depression. I’m going to pause here for a moment, because it feels weird to admit this at large to the internet. But the truth is, children have died. Many children, that we knew and love. My child will one day die, and I don’t know whether that’s soon, or not soon (both realities are inconceivably scary). If you add in the sleep deprivation from around the clock care, and the relentless day-to-day appointments and therapy, I think extreme and chronic grief and depression is an appropriate response.
The thing is, when I’m so down, doing anything other than taking care of Mikaere is tough. (Side note: I will never be so down that I can’t care for my son. He will always get the meds and feeds and care he needs, because idea that his already limited life should be anything less because of my feelings is impossible and will not happen).
I just… I feel like my emotions are raw, just under the surface all the time. It comes with all the shame and guilt and feelings like I should be better at holding it all together. I should be better for Mikaere. (To be clear, again, in case any stranger on the internet feels the need to DM me with their concerns – his needs always come ahead of mine, because if they don’t he’ll go into a seizure coma and die. Even in my deepest darkest abyss, I’ve will never not be able to take care of him).
You guys… so many children we care about have died. I talk about this all of the time, but I’m really struggling with it. There are big gapping holes in my heart. My child is so disabled and his disorder is terminal – the phrase ‘all is right with the world’ will never again be relevant to me. I’m constantly fighting for the next thing, constantly trying to figure how to get more for Mikaere, how to keep our little ship afloat, keep him happy and healthy. How I’m meant to hold on to the happy when our day to days are so stressful is beyond me.
I’m at a loss. I feel like I basically need to find another outlet for my emotions. I think about the gym. I think about more 1-1 therapy. I think about how we’re a single income family and how I’m meant to find time and money to do these things and the idea of finding time in Mikaere’s schedule and organising care… it seems impossible.
And then I mentioned it to our Homestart Worker. Homestart are charity, and they have a therapist who does pro-bono sessions. And now I’m set to see a therapist. I’m nervous, not really sure about how it’s going to go. I’m also really nervous about unpacking all the feelings from the last three years that I’ve packed waaaay down so I can get on with my day to day.
I’m scared to stay where I am, in the infeasible present, and I’m scared to start therapy, and facing the giant mess of grief I’m holding tight. I don’t fully understand how people navigate the world of pallative and grief and special needs without crumbling. The last three years have been so brutal. Facing more years seems huge (and idea of not facing more years seems impossibly crushing).
If someone has a magic wand they could wave, that’s the solution I could use right now. (Or you can fundraise/donate towards a cure. I’m shaving my head for NKH research, so yeah. Donations would work too).