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.
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.
Happy New Year everyone! A sincere and heartfelt wish for good health to you all.
I did not expect to write a “new years” themed post but life is full of surprises.
It wasn’t a good start to the year. By last Thursday (only the 2nd day of the year) it had already become too much for me.
Normally I don’t like to stay up until midnight on New Year’s Eve. I’m tired most of the time anyway and it just takes me too long to recover these days. Plus, there’s something about having to stay up that I rebel against.
I stayed up this year as we were with family (it was a lovely evening) but by Thursday morning I was still recovering. My daughter woke up around 9am feeling ill. With terrible stomach pains, she was crying and throwing up. As I tried to comfort her my mind ran through all the things it could be:
Stomach bug
Bleeding ulcers
All that Piri Piri sauce she ate yesterday
Bleeding ulcers!
Gastritis …. and bleeding ulcers!!!
I have a bit of a paranoia about bleeding ulcers. You see, she is on a combination of meds that can cause ulcers. She has already had severe gastritis because of her meds (age 6 months) and she is on an NSAID that is only for short term use (read weeks) because it causes ulcers and she has been on it for 6 years. Yikes!
It’s a calculated and managed risk. It saved her life in the early months, kept her out of hospital in the first couple of years and allows her to have a good quality of life now.
However, it is a ticking bomb that may or may not go off. If she gets an ulcer she won’t be able to take this or any other NSAID for the rest of her life. Muscle pain and need Ibuprofen? No can do. Quality of life? Seriously affected.
So while all this is going on in my crazy, tired head, and I am trying to comfort her, my poor little girl is crying and asking for Dad (who was temporarily unavailable).
Brimming with frustration and impatience I just wanted to tell her to “stop it, just be quiet”. (Well, I wanted to shout it actually and there were quite a few exclamations marks in my head too).
I took a breath, explained that her dad would be back in 2 minutes and that I needed to go to the toilet. Then I left the room.
I stayed in the bathroom for a long time, much longer than necessary. I put myself in timeout. Her dad was brilliant with her; kind, patient, loving. Just what she needed. I am so grateful to him because last Thursday I just couldn’t do it.
So these are my 3 important lessons for happiness in 2014
It’s good to share the load.
It’s better to walk away than say something you would regret
Accept that Mummy time is never at a civilised time of the day (like 9am on a Thursday). Kids want their mums at stupid o’clock times like 4am on Friday morning. That’s when they want you to sit with them and hold their hand. So I did.
A friend of mine noticed what I guess you could call a freudian slip. She noticed that in my “about me” page I listed that I am a mother, daughter, sister etc but not wife or partner. (Don’t bother looking now, I have already updated it)
It was not consciously done (and I’m sure Freud would have a field day with that) but it did remind me of something else that happened when I became a carer.
You see, both my husband and I became carers all of a sudden. We have no medical training but all of a sudden we needed to use needles, figure out how to use a feeding tube without drowning our little baby by accidentally accessing her lungs instead of her stomach, do a physical exam to assess how dehydrated our daughter was etc. We were thrust into the roles of carer and nurse dividing up the days tasks between us.
In the beginning I was at home so I had the day shift. My husband would come home from work and I would hand over, which would go something like this:
“Here, you take her. She’s had her 4 o’clock potassium and needs her next sodium dose at 6 o’clock”. I’m going to the loo then I’m going to get dinner ready”.
I might even have said, “Hi, how was your day?” Far too often I was frazzled, covered in vomit and in desperate need of 5 minutes to myself and just said “your turn”.
I would go to bed early and get up for the 3 am rounds. John would do the midnight and 6 am rounds. We would both get a bit of sleep.
We were like shift workers, doing our bit then handing over the work load to our colleague.
This doesn’t leave a lot of room for a relationship. You just don’t have the time or the energy.
It’s not surprising that so many relationships break down in these circumstances. You need to feed and look after a relationship. Spend time on it, put some energy into it. When your every waking moment is consumed with worry, care and a million things that actually do have to be done otherwise someone will become (more) ill, then it is hard to look after your relationships too.
I was barely putting energy into showering. I really didn’t care what I looked like and dressed in baggy puke stained clothes most of the time (there was a lot of vomiting going on). Did I take an interest in what he was doing? Erm, no.
My focus was: how long can we keep her out of hospital this time? and why did we buy a sofa with a fabric cover? I need wipe clean surfaces – on everything. I’m never going to get that vomit out.
Let me also clarify – did it matter what I looked like? Not to my husband, but it is more a reflection of my state of mind. I didn’t care about a lot of things, I was preoccupied. I didn’t notice me and I didn’t notice him.
We were barely parents, let alone partners in life.
This has changed. It has taken a lot of work and I am thankful that my husband is so stubborn that even when I told him to get lost, he didn’t. It pissed me off no end at the time but I am grateful that he stayed. I calmed down, we agreed we needed to do something about it. That was not what we wanted but we needed to make changes. We needed to remember why we got together in the first place. We need to reconnect as people who loved each other, who had made this beautiful girl together and who were terrified of losing her.
Stress really tests a relationship. Sometimes it is too much. For those of you for whom this has happened, I share your sadness. It hurts.
Sometimes we hang on, clutching desperately, until we start to get closer together again.
So I don’t know what it means, that I didn’t add that I am a wife or partner. Maybe writing that first post just took me into the past where I didn’t feel like a wife anymore. Maybe it’s a sign to myself that it’s getting busy again and that I miss my husband.
Whatever it is, thank you dear friend for mentioning it. I think I’ll go and make a date with John.
Important note: this post is published with the full knowledge and consent of my husband. It’s kind of like the EU – if I mention him, he gets veto rights on the blog.
It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.
My little toddler got a stomach bug and vomited all over herself in bed. Quietly. I didn’t hear a thing and she never cried or called out to me. When I brought my eldest to bed I smelled it and saw her. Lying silently, calmly, in bed, covered in smelly puke. Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words. But if you are reading this blog, you probably know what I mean.
My heart broke.
All sorts of thoughts ran through my head. How did I not know this had happened? How sick is she? What’s wrong with her? A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her. Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.
When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.
So why do I know what I’m doing? Experience.
You see, my eldest has vomited almost every day of her life. Nowadays it might only be once a day but it wasn’t always this good for her.
She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly. (check out this website for info about this illness: http://www.barttersite.org)
One of the side effects is vomiting and at its worst, she was vomiting 20 times a day. Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve. The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.
What bothered me was finding my eldest daughter covered in puke in bed. At night I had to sleep. I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting. No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time. Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”
Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much. She looked surprised. Still. Almost holding her breath as if she was thinking “what happened? I was sleeping and now this?”
So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting. You know sod’s law right? Guess how many times I had to start all over again before I had even finished getting her cleaned up. Don’t know? Well I don’t know either, I’ve lost count.
Why did I even start this story? Oh yes, I’m having one of those days.
One of those days when the reality of my daughter’s life with a chronic illness weighs me down. When I see with full clarity the vulnerability of both of my children, of all children. It’s so real that I can almost touch it.
It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it. This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.
It’s one of those days that I go through all this and finally remember this:
I may not be able to fix it, but I can offer comfort. I can be with them, be present and loving. I can look them in the eyes, touch their hand, be with them.
I can acknowledge their reality and honour them for living it.
Acknowledgements
Inspired by my daughters and published in honour of William.
amber rahim 