I’m not going to lie. I do spend too much time thinking that being gluten free sucks, especially when I add in the low FODMAP diet too.
The health benefits are great but man, I miss cheese on toast. And gluten free bread just isn’t bread.
And honey, the manna from heaven, wreaks havoc with my body. White sugar? The evil of our time. Now that I can have.
Makes no sense (said in Eddie Izzard style).
And then I’ll have a day like to today when I hit the jackpot.
raspberries with sweetened condensed milk
This I can have.
Gluten free rocks.
Ps, yes I did eat a bowl, have a foodgasm, then write this post. But what’s a post without a picture? Now I have to eat a second bowl. Oh how I suffer for my art.
But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.
So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.
So we’re going to see if we can do this with laughing gas, to put her under.
The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.
Putting aside my feelings, I was really clear to hear:
it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.
But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time traveland this is what she wants to do with it.
So creative.
So scared.
And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.
Here’s another white lie I tell:
I’m just doing what any parent would do
I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.
Here’s a final white lie
that unconditional love comes from our children
That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.
We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.
Lamb to the slaughter. No matter how much I reason with myself, this is the feeling that I have.
F is the lamb and getting her mickey button changed is the big sharp knife.
its been 4 months since the last change. That awful day when 2 adults, me included, pinned her down while a 3rd pulled out the old mickey and put in a new one.
4 months since she stopped talking to me for 2 days.
We’ve done a lot to help her since then. We needed to. Her fear and anxiety are so high that I can spook her just by walking into her room.
So she’s been learning self hypnosis: designing her own happy place that she can go to when needed. When she needs to be calm enough to have her mickey changed
And she’s loved working with her therapist loves doing the exercises. Even when we forget, she remembers and insists on doing them. What a star.
so she is prepared. We’ve done everything we can.
But on the way in to the hospital she says quietly
“I wish I was someone else”
So I know. For both us this journey is like going to the slaughter house.
I can hear the shouting from here.
its a good job I don’t eat cookies anymore; I’d be the size of a house.
It’s summer so there have been a lot of barbecues. And I love a homemade burger. I make the patties myself in our scotpak rahim family tradition with some cumin and coriander thrown in.
I’ve never added egg or breadcrumbs for binding so I’m happy that this is something that doesn’t have to change for my gluten free adventure. On the scale I’m somewhere around gluten sensitivity and gluten intolerance.
I have my patties ready. All that’s missing is the soft, light roll to put the burger in.
Well, I also have IBS and am following the low FODMAP diet. Almonds are on my exclusion list too. As are a whole bunch of seemingly unrelated foods including most fruits, some veg and most grains.
So on Wednesday I had another look for gluten free bread. And I found some rolls. Excitement was building as I reached out and picked up the packet. And squeezed.
I was so happy! These were light and soft. And they were part baked so I could finish them off in the oven at home and have warm rolls. Yes!
So with anticipation, and a dose of “don’t get your hopes up” I read the ingredients (in dutch). No potato. Score!
Wait, what’s that I see? Apple fibre. Are you kidding me? I have a very bad reaction to apple and it’s definitely on my list to never eat again in my life.
Pants.
So it’s time to face facts. I can’t take the easy way out and buy ready made. I need to get busy in the kitchen and make stuff myself.
It’s weird that I was even thinking about buying because I love to bake. I guess when I heard gluten free I just chucked baking into the basement of my mind and locked the door.
Now I’m checking recipes against the FODMAP list to see what to try first. I’ve seen a choc chip cookie recipe with chickpea flour. I can have limited amounts of chickpea, which is good because it will stop me eating the whole batch. One a day will be my limit.
I love colouring. I always joined in when F was little and probably did more colouring than she did. I definitely do more than S.
Recenty my sister in law bought me a Mandala colouring book and I’m hooked. I have thin pens and thick pens and have reserved a couple of pages for the girls to colour (because of course if I am colouring, they want to).
i love using the thin pens the most. It takes more concentration and the colours just seem to be more sharp, jewel like.
its very soothing and this daily practice has been like a kind of meditation for me: it builds my reserves of resilience.
But today as I colour I feel restless. Some words need to be spoken. Yet I feel that my life while be forever changed and I’m not sure I am ready for that. But I don’t the know how much longer I can hold them in.
But these words I can say: we took S to the hospital today. She fell and hurt her hand. No amounts of bruises and scrapes stop her, and she reminds me of my sister Y, fearless and ever on an adventure. But today she cried so. She fell asleep in my arms and on waking, cried some more.
It was a quick visit and it looks like she bruised it. No broken bones they said. Let’s hope that’s true.
I caught myself comparing this visit to all our other visits with F. Those visits are always so complex but today I don’t want to compare. I am going to try and enjoy that whole process took under an hour, including the 20 min drive each way.
It was a breeze. So thank you God for the ease and speed today.
From the beginning we have been very open about Fs illness – with the family and with her.
Her condition is incurable and she will always have it. I have said that myself so many times that this incident really caught me by surprise.
J took the girls with him when he went to the hairdressers, While there, F needed her medicine (she gets it every hour) and the hairdresser was asking about it. And the really typical question came
“Can they fix it?”
F answered
“No. I’ll have this forever”.
J recounted this when he got home. And I felt a little stab in my heart when he repeated what F had said. It was like someone took a knife and just nicked me in the heart.
She was so matter of fact about it. For her it is what it is. And I’m immensely proud of her for her attitude.
Yet it just seems so painful to me when I think of my little 7 year old girl saying that she will have this illness forever.
Maybe it just makes it more real.
Maybe it’s because it puts the truth into the context of her life.
Whatever it is, I guess it just goes to show that acceptance of this illness doesn’t mean that it’s ok that she has it.
amber rahim 