amber rahim

Chronic illness: the parts we don't talk about


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“I want to be normal”

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

 

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.


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I don’t know what this means, but I bet you’ve thought it too

On monday night we were all sitting together at the dinner table chatting.

The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”

J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!

I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.

And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.

“Will F reach 74?”

I didn’t have this thought about the other two.

Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.

I don’t even want to try and interpret it.

But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.

You might even have that thought about yourself.

Is life just so much closer to the edge when you are sick?


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Rock and a hard place: Back to a PEG?

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

so, what to do?

Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).

I think it’s time for some Dr Seuss

WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET

YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

holding-hands-mother-and-child2

p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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Dusting off my soul, again

It’s been an art day today.

I saw this article about thanksgiving through art and laughed.

The Mondrian styled plate caught my eye and reminded me of the unappreciated benefit of art: it’s good for your soul.

pietmondrian

It also reminded me about one of my posts in way back in February Dusting off my soul. There is just something about art that lifts us out of the compactness of our lives and into a bigger space.

This afternoon I tried to make a van Gogh today: a starry night on MiniSteck. S was “helping”. Now that is a trial in patience. It was beautiful.

In case you’re wondering what Ministeck is here’s a pic.

ministeck


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How can pink donuts be my downfall?

I have written a lot about how I have dealt with never ending sickness extreme eating problems (i.e. nil by mouth for 5 years).

I think I have written about it with patience, become a little bit wiser through the process.

Well, today I do not feel even remotely wise or patient. Today sucks.

You see, little sisters copy big sisters. In everything. All those quirky eating/non eating habits that I was able to deal with in F, who has the illness and the multitude of reasons why she does that weird stuff, well, they just suck when S does them.

Take donuts. Until recently, F didn’t eat any kind of bread or bread stuff. Yet she was interested in the little sprinkles on pink sprinked donuts.  So what did she do? Pick off the sprinkles.

S loves bread. I mean really loves it (except crusts but hey, she’s a kid). How does she eat donuts? She picks of the sprinkles (and icing because she’s a sugar junky).

Now I don’t want to force either of my kids to eat junky donuts, I really don’t. But I want to shout “just eat the effing donut!”  Sometimes I feel trapped in this circle of weirdness with food and only one of them has the illness!

Can’t catch a break. You’d think it would be easier with the “healthy one”.

Sigh.image

Ok, whingeing session over.