amber rahim

Chronic illness: the parts we don't talk about


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Difficulty eating, not picky eater.

“Oh, they’re a picky eater? Well, you’ve just got to be strict with them”

“Don’t spoil them”

“Let them go hungry. They will soon give in”

“When they see other kids eat, they’ll eat”

Some of the wonderful and pointless advice I have received over the years. And if you have a child who has difficulty with eating, then you’ll understand me when I say that there are two camps on the topic of kids and eating.

Camp 1

My kid had no problems and I think that’s because I’m a good parent. Do what I did and you won’t have a problem.

Or

My kid eats but I want them to eat more healthily. They ate the carrots yesterday but today they threw them on the floor. Oh my god, my kid has an eating problem!

We talk about this a lot and give advice to others whenever we can.

Camp 2

It’s nuts. Eating is something that all animals do naturally, without event thinking about it. But my kid has real issues with food and the process of eating. So how the heck do you teach an activity that is instinctive? Yeah, that’s what we are trying to figure out.

We get advice all the time but rarely get listened too.

And ok, there is a third camp. A camp of people who feed their kids, their kids eat, mostly, and they don’t worry about it too much. But they also tend to just get on with it and don’t give meaningless advice to others.

I’ve been in Camp 2 for the last 8 years. It’s been a long road. It’s tested my patience. I’ve questioned my parenting hundreds of times. I’ve let the whole thing go (my daughter had a feeding tube so what the heck) and I’ve worked at it like a demon. I wrote my side of the story on how to actually help your kids to eat in this post 8 ways to get your kids to eat

And in 3 words? Give It Time.

But today’s post is a celebration. A milestone has been achieved in our household.

F, my daughter with the incurable kidney disorder, the one who drank Maggi flavour enhancer, neat(!), for about 4 years, the one who didn’t eat more than crumb size bites until she was 5, the one who projectile vomited at the touch of a banana, the one who had to learn how to move food to the back of her throat so she could swallow it, well she ate a baked potato. With tuna mayonnaise. And a little bit of salt and butter.

A complete meal.

Not bits and bobs. Not a collection of random food stuffs. Not just a single item like tuna or a plain tortilla wrap dipped in ketchup (yes, that really was an acceptable meal for her for a long time).

A complete meal.

AND

She took a complete, normal sized bite. You know, the amount of food you can get on a teaspoon and that any other kid of 8 would eat. You know, where the food actually fills your mouth completely.

AND

She didn’t vomit or gag.

She just ate it. Said it was delicious. Then took another bite. And another bite. And another. Until it was finished.

I cried. I held my tears inside because, well, she would just think her mum was a freak. Can you imagine taking a bite of a baked potato and seeing your mum cry because of it? She’d call a doctor.

But inside I cried with joy.

She ate! a complete! meal!

I want to add exclamation marks everywhere because all the words are so exciting and so important!!!!!!!!!!!!

And you know what else? She loves spicy tuna maki. And eats the whole thing. Not just picking a few grains of rice out and drowning them in soy sauce (because really, that’s how she used to eat them). SHE EATS THE WHOLE THING

I know there are so many other battles still to face. So many other things she needs to learn how to do to look after herself, and I’m not even talking about her medical routine. But she can eat. She can finally do that one thing that so many of us take for granted. She can eat.

Woohoo!

For all of you who are facing this challenge, a child with difficulty eating, I just want to say:

Hang in there. You’re patience is just perfect. You’re impatience is natural and sometimes will give you the push your child needs to be challenged. And take time to celebrate the milestones. Because there are many along the way. The first bite. The first time the food stayed in. The first time they say “can I try that?” Enjoy them all.

Who would have thought that baked potato with tuna mayonnaise would make me cry with joy?

tuna

 

 

 

 

 

 


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“Jobsworth” at the pharmacy

Ever heard that phrase “oh, that’ll be more than my jobs worth”? Well, if you are British you might have. It’s a joke about the types of unhelpful people you can run into in heavily bureaucratic environments.

Oh, I could help you but it’d be more than my jobs worth to do that

That’s the feeling I get when I call the pharmacy to order more medicines for F. Not with everyone at the pharmacy, just the one lady.

You see we have a running repeat prescription that covers the whole year. At the beginning of every year, F’s Nephrologist makes out the prescriptions for all her medicines and sends them to the pharmacy. Every month, we tell them what we need and they deduct it from the year total. Simple, I thought.

Yet this one lady gives us hassle.

Every time we call.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….” then in my head “It’s in your SYSTEM!!!”

Every time we go in to collect.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….”

Then she grudgingly hands it over.

Now I know she has protocols to follow. I know how strict the rules and regulations in the pharmaceutical industry are (I worked in exports to the Middle East and boy, the hoops you need to go through to get that job done!) But no one else at the pharmacy does this. They all know we have a year prescription.

But our daughter has been getting medicine from their for almost 8 years. And still she interrogates us. We have never not had a prescription.

I don’t think it is personal. Although, when you are standing in front of her steely, suspicious gaze in front of an entire pharmacy full of people, and she starts her interrogation, it sure feels personal.

So what kinds of drugs are we talking about here? With a really high street value? You’d think so, but no.

  • Sodium chloride (salty water, but special salty water)
  • Potassium chloride (different kind of salty water)
  • potassium citrate (I don’t know, but it helps her kidneys from turning to stone)
  • Nexium (to help with acid reflux.)
  • Indomethacin liquid (used in treating eye infections for normal people but it’s the main magic drug for Bartters peeps)
  • Vitamin D

So dear lady at the pharmacy, I do’t know why you give me such hassle. I don’t know what you think I am doing with this stuff. I couldn’t administer the lethal injection with the potassium chloride we get (I checked. Say what? Yes I know, it’s freaky. I was curious and wanted to know if we had dangerous quantities in the house and I had some time on my hands).

Dear lady at the pharmacy, please stop. Most days I can shrug it off but we have enough crap to deal with and traumas that we don’t need you to hassle us over something so meaningless.

Go find some other way to exert your power.

Try smiling.


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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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Control the fun

The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.

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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the


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The downside of bringing up independent kids

I have written before about bringing up kids who are independent, make their own decisions, are self sufficient. It’s a good thing. Yet sometimes it’s not.

As other MoBs (mothers of bartterskids) know, we are also teaching our children how to manage their illness. This can involve life or death decisions.

We know that one day we need to let go and let them make their own choices. They need to strike out on their own, solve their own problems and not involve us in the process. We hope that when that time comes, we have done enough that they know how to make good choices for themselves.

Yet humans do not always make good choices. It is always at the back of my mind that one day F will stop taking her meds. This terrifies me and the for the sake of keeping her well, alive even, I could violate her right to choose and force it on her. But that only works short term and legal independence comes at the age of 18 and what do I do then? Or what happens when I am gone? I want her to look after herself so that means she has to do it. So I need to let her make her own decisions.

So what if she does something stupid and ends up in hospital? What if she hurts herself?

I do not know what I will do but it is inevitable that both my children will make choices I don’t agree with, do things that I think (and know) will hurt them.

This dilemma that we face drives me nuts – we want them to be independent but we want them to do what we say!

What do we do?

Whether your child is ill and doesn’t take their medicine or is in trouble and doesn’t accept the help that is offered; or you think their friends are bad for them or you just want their jeans to actually cover their butts (both girls and boys), this is what I have realised:

These lives are not ours. We are only guardians. Only they are the kings and queens of their lives. And a King or Queen is an absolute ruler.

So I hope that by preparing them for independence and, when they are almost ready, letting go, that they will rule their kingdom wisely. And if they don’t, give me the compassion to forgive myself for letting them choose.

My second hope is this: that when they have tried it on their own, made mistakes, given us grey hair (ok, in my case, more grey hair) let’s pray that it doesn’t take too long for them to realise that it’s ok to seek advice, that they don’t have to do it all alone. All rulers need an advisor. Let’s pray that our act of letting go makes it easy for them to turn to us when they need us.

So I’m going to keep doing those little things to prepare both my girls; get them to tidy up their own toys, let F administer her own meds, let S brush her own teeth. Then as they get bigger, let them do bigger things.

I hope that when the time comes, I can let them go (without giving them a long list of instructions of what not to do).

Dedicated to my parents who brought me up to be smart and gave me the freedom to make my own choices. Some have been brilliant and some have been spectacularly stupid.  Thanks for praising the good and being there during the bad.


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Rare Disease Awareness Day 2014


rdd-logo

28th Feb 2014 was the 7th Rare Disease Day.  I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done.  So this is my first contribution.  Go and have a look at what they have to say (but first finish reading my post ;0).

What is a rare disease?  I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities.  Nobody knows much about them.

In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.

Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease!  That’s nothing.  You have no idea how lucky you are”.

I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick.  My baby was sick all the time.  I couldn’t relate. I had no empathy for them.

It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.

Every parent worries. It’s never nice when your kids are sick.  I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.

So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.

In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease.  You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.

Let them know that.

p.s. it’s not sympathy we are looking for, just some understanding.