Being Seen

I appreciate it so much!

It’s the little things that remind you how isolated you are. The assumptions. How someone can automatically assume your family outing was normal because they haven’t yet internalised (never will) that your life is anything but normal.

And so, when someone makes an effort to remind you that they always keep in mind that your life is challenging, it means a lot. We may never understand each others’ lives, never be able to know what it feels like to be the other, but to state that one is aware that there is a constant challenge on top of another, is in itself meaningful.

I have a 60 plus year old friend who is like that sometimes. Sometimes she just becomes a hug when I didn’t even realise I needed one. She has horrible fibromyalgia, joint problems and other issues nobody can figure out and Raynaud’s. I’d say she is the closest to feeling what AS feels like with its stupid swollen bone marrow. Yet she freely admits and constantly mentions that it’s easier for her because she CAN rest. She doesn’t know how I do it with six children with such different needs. Yes it’s less rest, but we all know pain and fatigue don’t really care whether you’re lying down or not. It’s more of a mental and physical ‘reduction of suffering’ that she has. But age and those operations she’s had are hectic and her body is worn! Anyway… She never tries to relate. Never tries to say she knows what I’m going through. And does a lot of “How do you manage all of them with their different needs? I struggled with only ONE!”

That is exactly it! They are all so different! And so differently challenging. And I love them all so fiercely! But oh yes, I thought my life was full when I only had two! Now it’s bursting at the seams and something is bound to break! Hey, if it happens, I’ll run away and go sleep at her place! Her daughter has run off to interesting places abroad so her room is free for me to escape to. 😅

I appreciate it. Today, my four year old who’s not pictured above, hurt her thumb in some way. I assume so anyway because she started crying and was holding it out to me. I asked her not to put it back in her mouth so I could take a look. (We can’t even get a chance to put the nail bite stop medicine on her finger because it’s wet!) But she did. The way so many parents of understandable children take the children’s communication ability for granted! I know, I was one of them!) Then she cried even more after sticking her thumb back in her mouth and picked a chair up, getting ready to throw it. It’s already chipped and cracked from another time she did that and so I quietly said, “Gently…” She became even angrier. She did put the chair down gently but then when I looked down to continue what I was doing – tightening her twin’s locs- she smashed her forehead down onto the chair. You can imagine how that impacted her. So I took her out so her noise sensitive brother wouldn’t suffer, and took her to a quiet place where none of us would talk and maybe make her feel worse.

It worked. After a while.

I am still struggling to process this. I hate this. I don’t want to become one of those autism families. The ones that scare me. The ones with the teens who make holes in walls and break doors. But I see it escalating. First it was banging the back of her head against the wall or cupboard, then it was throwing her whole body backwards onto ceramic tile floor (Try catching a heavy girl when she does that without warning and see how even your healthy back responds) and then she started picking chairs up and smashing them down. And now it’s a combination – chair and body.

I don’t like where this is headed.

And I know that when that old lady 😉 sees this post, she will send virtual hugs because even before it happened, she had been asking me how I do it.

I don’t know. It’s so lonely over here. So, so lonely. I make it seem funny and easy sometimes out there in non- blog but it’s not. I just know that sharing it with those who don’t get it makes it even more isolating because they don’t get it, ignore it, and then tell me something their children did that mine will never be able to do. Just to make sure I’m very aware of the isolation. 😝 I’m mentioning the isolation

I laughingly shared how I was teaching my middle two during the twins’ quiet time when suddenly, my four year old came bursting out her room and insisted on also doing school. It hurt. It really hurt. I now had extra work to do-bending over the table- and I wasn’t ready mentally and definitely hadn’t planned a lesson. She asked how I keep sane. And that’s without my telling her how my angel has PDA. She wants to do things HER way. Yes, she wants to do school, but she doesn’t want to be taught or instructed. She will work on the page with dots she’s meant to join, but first, she will colour in. And then when the siblings get up because they are done, she starts crying. Everything must be done her way.

It’s exhausting and isolating because nobody can imagine it. Nobody asks what bad or scary thing happened today when my day has ended, yet I would have lots to share if they did. And so, I appreciate when it’s all just acknowledged as challenging. ‘It’ takes in the head banging, the hidden used diapers one of the middle ones hides in the wardrobe, it takes in the huge costs of diapers for four children who should all be (if they were following typical milestones) all be out of them at least all by day and none at nap time and only maybe the twins at night.

It rejoices with any positives, but knows that I’m also wearied by the negatives I don’t share.

As for my next attempt at taming the AS beast? I asked the nurse where we are now in the process. Those were my words. “Where are we now that it’s been a month and I know last week Discovery said there were missing documents.”

I got what two others- above friend included- totally agreed was a patronising lecture implying I was being a pain on how I should be patient as “these things take time.” At no point did I say I’m tired of waiting. At no point did I say they are taking too long. This was my first request for information! As I said in my reply to them, I wanted to know what we are waiting for at the moment so I can gauge how much longer I might have to wait.

My goodness, every day sees me with worsening pain and stiffness. My husband was still shocked this evening at how I “couldn’t walk” this morning. Surely I deserve the courtesy of being kept in the loop about my own treatment? This is literally life and death. As the pulmonologist said, “When we slow down the AS, you’ll slow down the lungs. There’s no other treatment for them.”

Well, AS is winning. I’m not even fighting it with any real weapon. And so, I re- started the Enbrel left in my fridge. I have three more injections left. I’m scared they WILL make me get a random virus. But I can’t do nothing. Not when I have no idea when I will start to try fight this.

And so, my lives clash. Special needs mom vs chronically ill mom. Body and mental health struggling mightily. How do I manage my children’s challenging behaviours when my body is fighting me too? How do I handle the energetic bundle- that wants to do things her way-with grace when I am fighting to stand without showing the pain I’m in? When I’d really rather be in bed?

I don’t know. I just do.

And always at the back of my mind is the knowledge that though she’s not in my house, has no camera trained on me, there’s someone who’s constantly telling herself that she has it ‘easier’ when really, her easier doesn’t mean she experiences her suffering any less because of that head knowledge. It’s still awful.

There’s something less isolating when in a struggle with others also struggling, when I’m fighting alone but have them cheering me on and making me feel like I’m a winner just by staying in the ring.

Like my situation, victory is not in their hands either. They can’t employ themselves, they can’t make them selves better physically, those who are physically ill. So, I find solace in knowing we all know what suffering is. And we all respect each other for how we handle the suffering with grace and dignity.

Long may that last, even when we don’t understand why.

I’ll leave you with my angel. So charmingly excited at her first impromptu cutting lesson.