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.
In the interests of privacy, some of the information is going to be vague. Hopefully the message will be clear.
The reason I started writing this blog is because it is hard enough being a parent but then throw in a long term or servere illness and then it gets crazy hard.
for example, in my first 2 years as a parent, my priorities were:
keep her alive
keep her out of hospital
don’t turn her into a scaredy cat while trying to do 1 and 2 (who wants to live a life of fear, especially inherited fear from your mum who is freaking out?)
There was not a lot of “parenting” going on, and it certainly wasn’t my focus. Maybe that is being too harsh on myself. I just wasn’t thinking about parenting at all.
Was I a bad parent? No. I did what I needed to do for the sake of my child.
Recently we found out that someone in my family has a serious illness and now they are in a coma. We don’t know what the future holds for them and none of us knew that there was anything wrong.
The parents are wonderful parents. They have other children with illnesses. Their lives were already crazy hard and now it just got harder.
There is so much I want to say to them and this reminds me of why I started this blog.
As a parent, when looking after a child or children with chronic illness, it’s tough.
Most of the time you are a carer more than a parent. There are so many other things to take care of, arrange, take into account that it’s a miracle if you just have a normal conversation with your kids. Just a normal “how are you?” as chit chat and not as a request for a status report on the illness.
So what I want to say to all parents is this:
You are a good parent.
No matter what you have forgotten, no matter what you missed, you are good.
No matter what your kids do, you are good.
No one could be a better parent to your kids than you. You are perfect for them, just as they are perfect for you.
By being human, by being imperfect, you allow them to be human, to be imperfect. You are enough, just as you are. They are enough, just as they are.
Being able to accept yourself as you are is the most important gift that you will ever give them. By giving it first to yourself, you give it to them with all of your heart and they will receive it.
So be kind to yourself, so that your children will be kind to themselves.
amber rahim 