Okay. I’ve spoken to so many people about grief. About people who work in hospice, who work in hospitals, who have lost parents or partners or children.
Grief is huge and it touches everyone.
I feel like I’m in the (fairly) unique position of the special needs life with a terminal child. I grieve the special needs life, that we never got to experience the special needs life,that Kai has NKH. I grieve children we know and love who have died, and those that will die. I grieve that one day Kai will die.
My present and my future is filled with grief. Constant. Cyclic. Never ending.
I’m going to tell you a thing. I don’t tell you because I’m looking for pity, but I do feel like it’s a part of the path we’re walking. I’m down you guys. Not in a ‘just a bit down, a bit sad’ way, but in a ‘lost all hope currently in the dark abyss’ kind of way.
Intellectually I’ve always know that my baby is going to die. I’ve always know that children with NKH die. I’ve always known that my child is disabled.
Emotionally I didn’t feel until these last few months. There are children *dying*. Children have DIED. Halle Mae. Kaleb. Alexander. Cathryn. Gregory. Siem. Those are children who were so loved, and had lives and families and now because of NKH have died. I didn’t know all those children personally, but Alexander (and our sweet friend Rauirí) – their losses both threw me into the left field of murky grief (even now I want to excuse my feelings – my feelings are inconsequential to their families grief, the idea of losing your child is nothing next to actually losing your child).
And as I was desperately trying to manage those feelings, of what it was like to have children you know and love pass away, it became really clear that Mikaere isn’t severe. We cheer on his milestones but what it means is he has a longer life expectancy than we originally thought… except, life length is not the same as quality of life. And then my beautiful boy turned two. As I carried him in my arms, his little head resting on my shoulder, I watched a boy younger than Kai jump through some fallen leaves. Another child walked by, holding his dads hand as he toddled past.
My son is disabled. And that’s hard to admit, because I don’t want that life for him, or for us.
Intellectually it’s easy to say that it would be better if he died sooner, rather than later. He’d suffer less, less seizures, less pain. But I can’t wish for my baby to die, I just can’t.
And I feel stuck in the middle. My beautiful baby boy is disabled and is going to die. Between the grief I have for the children who have died, and grief I have that mine will, and the grief that our life is not the neurotypical… I feel helpless. I feel hopeless.
I feel like there is nothing I can do – literally. I can’t fix this. I can’t fix my baby. I can’t heal him, or take away the NKH or the damage that’s been done. I can’t make any choices that would relieve him of those symptoms. Excellent care, or shit care – he’s still have seizures. He’s still suffering. He’s still hurting. And we’re still stuck in that hard place, the horrid special needs life where Kai has seizures and pain and hospital visits (not all the time, granted. But a lot of the time) and then when all of this is finished, when it’s all said and done, it will be because he’s died. When there have been so many other children we know and have loved who have died… this reality is painfully raw and close.
So. I’m in the dark-lost-all-hope-in-the-deep-abyss place. I’m finding it hard to get out of it, hey. I’m slow to move, tired and I snap at Sam over tiny things. I can’t get myself moving, and caring for Kai is about all I can do (I miss the girl from last year, who was determined to make change and had a million different fundraising things on the go. Where did she go?)
I’m going to ask that you hold all your well meaning comments to yourself for a moment. Yes we’re talking to a therapist who specialises in special needs, bereavement and palliative care, yes we’re very strong and we’re amazing parents and no you probably can’t imagine and I’d really like if you weren’t sorry, or were thinking of us or sending love.
I don’t mean to be callous here, but when you send me the same words that everyone else sends me it becomes meaningless. Platitudes feel insincere and widen the isolation gap because I feel like you don’t understand, like I wasn’t clear enough, or my feelings are too big for you to meaningfully respond to.
The way to avoid platitudes is to be specific – what specifically are you sorry about, and why is that important to you? What are you thinking, genuinely? What thoughts are you sending and why? It’s harder to express and requires more work on your part, but if the connection is genuine, it makes me feel less alone. I read a quote about how words aren’t measured at the speakers mouth but the listeners ear. It seems apt and explains why platitudes are so so shit to receive.
Platitudes aside, here’s what I’d like: tell me something amazing that happened to you today. Tell me something that’s made you laugh today. Tell me something happy. Fill my comment thread with happy happy things.
If you were about to type ‘I’m here if you need me’ or ‘if there’s anything you need’- here is what I need: a cure for my baby. Here’s how you can help: donate. Fundraise. Run a bake sale/competition at work. Run a 10k and fundraise on just giving. Give up chocolate for a month, and for every craving donate a £1. Start a swear jar and donate the contents at the end of six weeks. Sell something on eBay. Have a fundraising BBQ. Run a raffle. Raise £10. Raise £50. Raise £5000. Raise something.
If you know me in person, please come visit. If you can’t visit, please call me for a chat. Just to say hi. A two minute hello. If you can’t call, or I don’t answer because I’m busy with Kaikai, leave a 30 second whatsapp audio message, so I can hear you. I can’t tell you how heart warming it is to hear someones voice. I’ll take it, greedily, that 30 second audio file. Isolation, I’m struggling with it. That abyss feels deeper when I’m alone all day with my thoughts and a nonverbal baby. As I type this, I’m sat by Kai, who has just had a seizure and is now in that horrible sleeping-recovery phase. I can’t go anywhere, and I’m heartbroken, having to watch him suffer over and over. I’m lonely and scared for our future and I don’t know what to do with myself.
I know, I know, so many people have said ‘just call me if you need, anytime, call me’ and I’m grateful, but I can’t get out of my head long enough to recognise I could use the company and do something about it. Please don’t wait for me to call you. Please just call to say hey, a two minute conversation when you’re free.
It’s a weird place to be in. I literally don’t see a way to turn. We’re either living the special needs life (which has moments of up but mostly moments of extreme down), or we’re living without Mikaere (I can only think how horrific that would be for us). Both of those options seem unfathomonly unfair and hard and devastating. I don’t know how to navigate through the grief either of those situations. It seems hopeless. My present and my future are filled with so much grief. And so, abyss. That’s where I am right now. Womp.