It’s a common occurrence that us parents take more photos of our first born than of all our other children combined.
It’s a combination of novelty, the undivided attention they can get and time (you don’t realise what little time you have in a day until you’ve got more than one kid).
I am no different than anyone else in this respect. My little S is growing up so fast and yet so little of her is captured in photographs or films.
We were going to the park the other day and she was running, her arms by her side and her hands flapping back and forth to help propel her forward. Enjoying her enjoyment I thought this would be great to have on film (then you could see just how cute her running style is) but I realised I didn’t have my phone. Yet another moment that will only be stored in my personal (and dodgy) memory bank, that only I can enjoy.
It reminded me of a clip I have of F as we walked to that same park. She pushed her toy buggy with a “sick” baby doll inside. She was the carer, taking this baby out for some fresh air.
I did have my phone with me that day and I have a great short film of it. In fact I have lots of short films of all the cute stuff she did.
Contemplating the difference in me regarding F and S, I have to acknowledge that in the early years with F it wasn’t just the novelty or time, in fact her care took more time than looking after 3 healthy kids. There was also a sense of urgency in me. An imperative to catch her on film because maybe soon that is all I would have left.
Phew, that was hard to say.
It was almost too painful to look upon her directly, without the filter of a camera in between.
I have always been dimly aware that I felt this way. It’s one of the reasons I crashed so hard when she finally started to be well for more than a few days at a time at the age of 3.
So little S I am truly sorry that I do not have more photos and films of you. Please know that I am not taking you for granted because you are healthy and expecting you to always be there. Because the future is not guaranteed and the angels could take you away just as easily.
You see, I am paying more attention to you. I am trying to focus on being with you now, joining in with you, no barriers. I have learnt something from you both about being a mum. When you look at me I want you do see me, not the camera.
I see you and you are great of spirit.
A clever clown who is sweet and kind.
A tough little lady who cries when she falls off the sofa and lands on her head (seriously, how can we stop this happening without tying you down?) Who then, with determination, goes back on that edge, carefully choosing a safe spot this time.
You are vocal about your displeasure (especially at the sofa for not being as wide as you imagined) and you shine brightly and shimmer with joy when you pat your tummy and say Yummy!
I have finally put photos of you up on the wall. It’s something that you have not noticed but has been a weight on my shoulders.
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.
I actually wrote this last year but it feels relevant again. After this hectic last 6 months and completing my exam (for those who want to know, I passed!) I really feel like pootling for a bit.
In the Netherlands there is a motorway that is 5 lanes wide, called the A2. It was widened to release congestion and the speed is limited to max 100kph.
At non-peak travel times it is funny to see 3 lanes with traffic and hardly anyone is tempted to speed along in the 4th and 5th lanes. I’m sure the traffic cameras and the speeding fines have something to do with it but I also think it is a part of human nature to follow rules and guidelines.
There is common sense in them. Slowing down reduces congestion at hot spots. It’s safer, you’ll get there around the same time anyway, etc. I kept to the speed limit, I thought I was being a good citizen.
But actually, those aren’t the reasons I kept to the limit. I kept to the limit because I liked it, it was comfortable and quite frankly, after the series of mega unfortunate incidents in my life in the last few years, I have a very great appreciation that it can happen to you.
I’ve seen death approaching and I don’t want to meet him again any time soon.
Hospitals aren’t much fun either and I have had plenty of opportunities to sample their delights on a regular basis so I don’t need a car accident to bring me there too.
So I mosey down the A2 highway and it feels good. I’m glad they set that limit because actually I don’t want to go faster than that anyway and the government gave me permission to drive slowly.
On roads where the limit is 120kph I still only want to drive max 100 but somehow I feel pressure to go faster.
One day I was struck by how funny that is. I am opinionated, decisive and really don’t like being told what to do. Yet I feel like I should go faster than I want to, just because of a road sign. That’s when I realised that the reason I like the A2 so much is that I am relying on someone else to give me permission to be how I want to be. How ridiculous is that?
I could just give myself permission. I do give myself permission. Permission to cruise when I want to, to race when I want to, to stand still when I want to.
So the next time you see a slow poke cruising down the road, it might be me. I’m not trying to get in your way or make you late. I’m feeling good.
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.
amber rahim 