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 postand 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.
Ok, so after my impression of Homer Simpson’s “angry dad” last week I was able to chill out and get back to the positive psychology approach to getting kids to eat.
This week I practiced No. 8 Agreeing together what the rules are going to be. The heart of this is control. We gave her space and on Monday she asked if we could barbecue. It’s winter in Amsterdam and it was about 10C so of course we said yes. Hubs bought some meat (ok, this is not in line with “rule 1” but we didn’t have meat for a BBQ in the house. It’s winter!). The kids went outside with Hubs to make a fire and cook. We ate inside.
This is what she ate:
Butterfly lamb chop
Chicken drumstick (she got through half a drumstick)
Green beans
Sauces: piri piri, mayo and ketchup. Lots of it. (no photos, I’m not advertising here).
So how is it that last week eating was a problem and on Monday F had a feast?
Was she just being fussy? No.
Bartters is a rare illness and there is limited understanding of what it is actually like to live with it. Over the years I have talked to adults with it or with Gitlemans and I have come to understand a few things.
Your electrolytes go out of whack at any given moment: your potassium levels can drop when you get stressed, when you are active, when you play a lot, when you get hot … basically, when you do anything, your levels can drop. When this happens, you are dehydrated. You feel nauseous and don’t want to eat.
Everything you do uses potassium. It makes your muscles work. When you don’t have enough, your muscles don’t work as well. So sometimes even swallowing is difficult for F. There was a long time (more than 12 months) where she could chew the food but couldn’t swallow it. So you might want to eat but you can’t.
All those meds you take make you feel like crap, so you don’t want to eat.
Everyday there can be a number of reasons why you don’t want to eat or can’t. That’s why after all these years we still rely on medical nutrition (feeding tube people have you tried Peptisorb by Nutricia? It’s great. Here I will advertise. This dramatically improved quality of life for F and for us).
So Monday was a beautiful day. Her enjoyment of the juicy lamb was clear (it’s been months since she ate red meat) and she chatted all the way through about how delicious everything was.
You can’t imagine my joy at hearing her groan “ohh I’m full”.
I’m just going to savour this memory and stop right here.
The cause is related to her illness and it is reinforced by physical and psychological side effects of this chronic illness.
Not just a fussy eater but literally for years F hasn’t been able to consume more than about 20 kcal a day through eating or drinking, with sometimes months going by without food passing her lips.
This is changing, firstly with Haptotherapy and and now we have a program to encourage her eating which is based on creating opportunities and rewarding her with recognition when she eats. We do nothing when she doesn’t eat, except to say “ok, maybe next time”.
However, this last week I’ve been getting pissed off. Really pissed off. I make things I know she likes and she says “no”. I ask what she wants and she replies “I don’t know”. Sounds like a lot of kids, I know, but I lost it.
I got annoyed and told her I had had enough. We had words. We sat apart, brooding.
She saw my tears and she hugged me. Yes it should have been me that moved first but sometimes our children are just better people than we are.
There’s a fine line between giving space to let them feel free and encouraged to eat and being totally I ineffective letting them just mess about. Sometimes I get lost and don’t know where I am in relation to that line. That’s what this last week was about.
When I’m on the right side of the line, it’s great. Positive psychology to encourage her to eat really does work; her range has expanded greatly and quicker than we ever expected (hey, in our world, getting her to put a whole teaspoon of food in her mouth in one go after 6 years is speedy gonzales fast). And it’s without arguments over food (well apart from the one I mentioned earlier but that was my fault). There is no power struggle. Repeat, no power struggle.
This is what it looks like:
1. We are open to her needs without being slaves to them. For example, we try to have stuff she actually eats in the house. If we have run out we put it on the list for the next time we go shopping. Running out is not the end of the world for either of us.
2. Get her involved in cooking. She loves to chop stuff and sometimes she just uses her hands (mushrooms are super easy at any age). I try to keep something for her to cut and if I can’t do that, then she can put what I have cut up in a bowl before we transfer it to the pan. It is not really necessary but it gives her something to do (and I look like one of those TV chefs from the 80’s who has stuff ready in little dishes. The irony or my scornful question “who cooks like that?”)
3. Let her play with food. There is a reason babies and toddlers shove their hands in their food and smooth it around. They are trying to figure out what it is and what it feels like before they bring it into contact with a very sensitive part of their bodies – their mouths. F totally skipped that activity as a baby (it made her projectile vomit to see a banana let alone touch it) and it only kicked in when she was about 3 or 4 years old. So we let her use her hands, to just touch and explore and to eat. If this is something she needs to do before she can take the next step of taking a nibble, then it’s fine by me. (Restaurant behaviour is a bit different and she is ok with that, she knows why).
4. Patience. Patience. Patience. And a kind voice.
5. Give time for the choice to be made. I start early, especially with dinner as that seems to take the longest. It goes like this:
Me: What do you want for dinner later? we have X, Y, Z (hmm that’s a thought, maybe I should try alphabetti spaghetti. Do they still make that?)
F: I don’t know
Me: ok, think about it or have a look in kitchen. I’m going to start cooking later
As time passes and dinner is getting made, we go through this process a couple more times, with the “deadline” for choice making getting closer.
6. Seems like she can’t make a choice? I just make something, put it on her plate. She will either eat it or not. Quite often she will – isn’t it great when others make the choice for you? I mean, half of my conversations with my husband start with “what shall we have for dinner/lunch?” (hmm another date night is needed methinks).
7. Involve her in the shopping: making the list, picking the stuff up in the shop, pressing ok on the pin machine (she loves this) and putting the shopping away when we get home. Ok, that last one doesn’t happen very much but it’s on my wish list.
8. Agreeing together with her what the rules are going to be. Super duper important one here. My agenda is to get her to eat. Her agenda is to eat, it’s just seasoned with a bit of control, wanting to choose and the occasional urge to just say no.
These all work.
But sometimes I just want to be listened to. Not to discuss but to just say “here, eat this” and be obeyed.
I choose that word deliberately, obeyed. It has nothing to do with eating really and is more about being tired.
Bringing up kids, who can think; make a plan; negotiate; consider the consequences of their actions; be creative, is hard work. It demands the same things of us and sometimes, that leaves me tired and cranky.
So this last week the seed of doubt found it’s way into my mind. It said “she’s just messing with me. Am I stuck in the Princess and the Pea story here?”. So I took the short cut, raised my voice and told her to “just eat!” It would be so much easier to have a robot that would just do what I say! Sigh. Needless to say, it didn’t work.
But a robot would not have given me a hug after seeing my tears. That affection came from the independent human being who can think for herself, who can make her own choices and who was moved to hug me, knowing that it would bring me comfort.
Enders Game has been made into a film (Ender’s Game (2013) – IMDb) and I am not sure that I should go and see it.
I have read the book more than 30 times. There is something about the tragic irony that keeps me coming back to visit.
I love the book, I know it well and I have a vision of what the characters look like, how they talk, who they are.
So, like all other lovers of books, I ask myself do I want to see someone else’s interpretation of it?
My expectations will never be met. I can’t even articulate all the things I would want there to be in the film to make it “right”.
Yet I am curious to see what they did with it. What did they leave out? Did they change the end? Will they get into the deep issues? Or will I be disappointed when it turns out to be a hyped up “he’s the ONE” film like The Matrix?
Whatever happens when I watch the film, there are two themes of the book that are particularly close to heart at this point in my life:
Expectations for the future
Controlling behaviour – how to influence and get the behaviour you want from people. Sometimes, especially at bedtime, I wish I could control people, especially my kids.
Expectations
Growing up I had a vision of what my life would be like. Based on the wonderful example of my parents, I knew that my kids would be great: cheeky but obedient; responding to my brilliant parenting style; disciplined yet fun and loving.
The reality is nothing like this. Yes the elements are all there: I am loving, we have fun and use humour in a positive way and yes, there is discipline. Yet the shape and form of my life, how I am as a parent and what my children do… well, it’s not like the vision I had. The pictures don’t match.
For a start, when it comes to parenting, my husband and I don’t agree on everything (ok, this excellent opportunity for make up “activities” is not restricted to parenting. We disagree about a lot of things, but that’s for another day).
This is another way that the pictures don’t match:
Controlling behaviour
My children have a different interpretation of my parenting which I call “wilful misunderstanding”. They do not respond in the way I expect or hope for; they will not be controlled. They even dare to make their own choices and develop their own personalities. They do not listen to my wisdom and obey!
For example at bed time, my side of the conversation often goes like this:
“ok, another 5 minutes and then it’s time for bed” (yes super nanny, I listened to you and give them that time to adjust)
“come on then, brush your teeth and put your pyjamas on.” (imagine my firm and authoritative voice. Thank you mum, you showed me how that is done. That should work).
“Yes now!
good, you’ve brushed your teeth.
now get changed
Come on, get on with it!
…and without all that prancing about half naked!”
Quite some time later…… kids are in bed, books read, cuddles given.
“Ok, stop talking now. It’s time to sleep”.
Sigh.
Mum, where did I go wrong? Wasn’t I always a wonderful child that did as I was told? (ok, don’t answer that).
My expectation of parenting did not come true but it is sweeter than I ever imagined it to be. I did not know that the same face that could make my blood boil in an instant could also melt my heart two seconds later.
I still dream that my parenting will be brilliant; that my kids will grow up to be happy and able to look after themselves and others. I dream that I am helping save the future of mankind.
So ok, maybe this film will not melt my heart and I expect some changes to the story will boil my blood, but it is just a film. It is only someone else’s interpretation of a book and it will not meet my expectations. But maybe I will like it anyway. If I don’t? It’s ok, it’s not the end of the world.
When I burnt out I was traveling at 100 mph being batman; saving my business world from the bad guys and crooks who appeared disguised as project managers and stakeholders; and in my private life, fighting off the evil villain of my daughter’s chronic illness. I was working harder and harder and doing it with a smile and sometimes a snarl.
Finally, a message came through. My body finally broke through the wall I had put up in my mind to avoid the truth. My body is a dirty fighter and hit me hard with aches and pains and finally, took my mind. I was tired, cranky and short tempered. I was forgetful, I couldn’t even remember how to spell forgetful. I couldn’t sleep. I was exhausted, worn out.
I had an epiphany. ” I need to stop, take a break before I break”. I thought I was so smart and that I had realized in time. Ha! Could I have been more wrong?
So I parked my bat mobile, got ready for a 4 week timeout and …… just stopped. Everything just shut down. I could barely function. I had used up all my reserves and was empty.
It took a long time to start back up again, 1 step forward, 1 step back, a step sideways etc. I started making progress, recovering, to function. However I realized that there were some things that I couldn’t do anymore and I feared I was broken. I felt broken.
You see, I thought that people are like elastic bands; when you stretch them too much, they break and they stay broken.
With my burn out, these are the “elastic bands” that broke:
– multitasking. It took all my concentration to make a cup of tea. I couldn’t have a chat with you at the same time.
– being able to take on the intensive 24 hour care of a critically ill baby with just my husband and I to split the shifts over. (Of course I had been trying to do this perfectly). A lot more work fell on my husband’s shoulders (sorry dear) because I wasn’t able to do my part.
– Being a superhero. Batman was gone, suit back in the cupboard. I just didn’t care to fight the bad guys anymore
– Being helpful: saying yes, I’ll fix that / take care of it, you can count on me. Gone. I just wanted to tell people to, well, insert your own swear word here.
I really thought I had lost a lot but something strange happened during this mega timeout. I started to see things in a new light. Those things I mentioned just now? This is what I like to call them now:
– ” tolerating being overworked”
– ” being taken advantage of”
And
-“not asking for help”
Now that I see these “elastic bands” for what they really are; negative, destructive behaviours. I am glad they are broken.
Who actually wants to be a superhero, working non stop, taking care of everything? (Never mind having to wear your underpants over your tights).
Who wants to do it all alone?
It was with relief that I realized that people are not like elastic bands, we are organic. We grow, adapt, learn new things.
New things have taken the place of the things I lost. These are my new things:
The ability to
– say no. Or “not now” and fit it into a time when I can do it without adding stress.
– recognize if I am becoming overloaded and getting cranky
– take action if that happens and get myself back to feeling good: look after myself
And these two are my favourite:
– letting go
– asking for help
Whatever I am doing, it doesn’t have to be perfect.
I canlet someone else do it. I still think there are a lot of things that I can do better than anyone else – I’m not humble, I admit it!. But if it means that I can take a break, get other tasks done, just breathe, then it’s worth letting someone else do an average job. I can live with imperfection if I can just breathe.
So did burn out leave me broken?
Actually, it set me free. Those restrictive bands have burnt away, leaving me covered in a fertile ash where things can grow. I have grown, improved, become a better me.
I can get more done than ever before because I delegate and share the load. I accept and ask for help. I focus on what is important and I’m mindful and do one thing at a time (well, ok, I’m not living a zen life but I do it a lot more!).
I feel happy again, I laugh and I experience joy. I dream and I expect to make some of those dreams come true.
So people, remember this: we are creative, we are resourceful and we are whole.
This post is going to be a bit different. It’s not about chronic illness and it’s not about struggle. Something happened this week that made me happy and I want to share it.
In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness. Ever since, I have been doing something more consciously and deliberately.
I have been acknowledging my daughter. It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is. It goes something like this:
” You know, you are smart, you figure things out.”
“You are funny and cheeky”.
“You are intelligent”.
“Even when you are scared and nervous, you try new things”.
“You know what you want”.
When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”
It seemed too much for her and she got embarrassed. I think this is something we all do when the attention is turned to us and who we are. It’s sopersonal and we are not used to it.
As time went by she starting getting used to me doing this. Then she started to ask me, shyly, to “do that thing, when you say stuff”. She would smile, my heart would melt and I would oblige. I was happy, she was happy.
I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her. It’s been a while.
I started talking and she started smiling. Confidently.
The she spoke and blew me away.
“I know” she said.
We both grinned and hugged.
I thought “this is beautiful”.
So I have new definitions of beauty (to add to my collection). Beauty is someone glowing with the confidence of knowing who they are. Beauty is the connection created between two people when they share this knowing.
And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.
Yes of course she gets insecure or disappointed in herself but she also knowsthat she is smart, funny and brave.
amber rahim 