Never say never

Well, where to begin? It's been around a year and a half since I last wrote a post on this blog and I guess that the main reason for that is that life came and found me again, this time in a really good way.

In fact, less than a year after I wrote the post "Career vs. Motherhood" I started working again. It has been a really wonderful thing and reading back on that post, I think I was trying really hard to come to terms with the fact that all those dreams I had in the past about my work in research were just not possible anymore. Luckily, I have truly amazing parents who decided to do what not many people would and instead of living out their retirement in Madeira went completely against the norm and moved to London to help me look after my children. I won't really go into the guilt of feeling like you're robbing your parents of their quiet and relaxed retirement, maybe some other time... But I will say that what convinced me to accept my parent's offer was to realise that actually, as wonderful as a sunny island with delicious food may sound, maybe seeing your grandchildren grow and having a very close relationship with them might bring you more happiness.


With the possibility of my parents moving to London I finally allowed the thought to enter my mind again: maybe I could go back to work... Could I even do it? It had been three years since I had last stepped foot into a lab, would I remember anything? Would I be able to cope with my children's needs and a demanding job?

I was lucky enough find my way back to work amongst friends, people who knew my work from having worked with me before and so at least I didn't feel the pressure to have to prove myself, I just had to be me. At first I felt a bit insecure about things but it's funny how my confidence just came flooding back and there I was, just like I had never left. There was lot to catch up with and for 9 months I worked with a dear friend of mine who helped me immensely and brought me up to speed with things. Then I got another lucky break and got a new job in another lab working on my own project for 2 years and it has been really great.

Science is definitely my thing, the excitement of trying to solve a puzzle, always trying to find clues in things, ways to explain what's going on. There's also a lot wrong with science as a career but I guess that at this point I don't have the jaded/disillusioned view of things that many post docs have after a few years on the job. For me this is my second chance, something that life took from me and now that I have it back I will do my best to hold on to it and make the most of it.

You know what they say: "You don't know what you've got till it's gone..."

As for the much talked about work/life balance, I have to say it's not too bad at the moment. My parents, in particular my mother, have been wonderfully supportive and so I always know that when I'm at work my children are being well looked after by someone who loves them unconditionally. It's also meant that T and I share the "load" of N's appointments and other commitments which has actually brought us even closer and it feels really nice to have that extra support. Not to mention that we can go to the cinema again! (We used to go all the time when we were living in Glasgow, it's kind of our thing...)

Yeah, life has really changed for the better and it feels pretty good.

Avó (Grandma) always sends me pictures of my girls to let me know what they're up to ;-)

A is always keen to show off her fashion choices :-D

Perfection is not required

I've been thinking a lot about N, about her life, present and future, and about what my role in it should be. I'm not talking about the regular mum role or her regular life as a 4-year old, I'm talking about that little bit extra that comes with the fact that she has cerebral palsy. I was reading a review article this weekend which looks at the different medical therapies available for children affected by cerebral palsy in the light of current research. It's an interesting article and it got me thinking again about how we try to help N make progress in all aspects of her development, particularly her physical development, where she faces her greatest challenges. At the moment, N's head control is still quite erratic although she continues to steadily improve, and you can imagine that without good head control things like sitting, standing or walking are not exactly within reach. So I ask myself: what is the right attitude in face of this situation? In one extreme, I might become almost obsessed with N improving, relentlessly looking for a "cure", very focused on achieving particular milestones and pushing constantly towards a set goal. On the other extreme, I might feel that since there is no cure for cerebral palsy I might as well accept my daughter as she is and just let things be. It feels obvious to me that I should aim for somewhere in between but it doesn't always feel easy to strike the right balance.

My little N at 5 days old. What a miracle her life is... It is incredible to think that from such humble beginnings she has grown to become an amazingly strong and beautiful little girl.

I obviously want N to continue to develop and to improve on the things that limit her ability to live and play like an ordinary 4-year old. I know that the brain is an amazing organ and that its plasticity offers incredible hope for anyone that has been affected by a brain injury. In fact, there is a lot of research that demonstrates neuroplasticity and so the potential for improvement is there. How we might tap into that potential is a whole different matter and this is already the first hurdle. There is an incredible amount of information out there and it can be paralysing to even begin to look for what might be the best approach. Articles like the one I mentioned above do help but there is obviously more to it than that, because not all approaches that might work for N will have been thoroughly researched with published results, either because they are relatively new or not typically "medical". 

My little fighter, constantly defying expectations

Already looking like a completely different child during her first Christmas at home

 At some point when N was around 1 I started thinking that her regular physiotherapy was really not enough to help overcome some of the challenges of her condition. At the time I looked around online for information on different therapies and I came across Feldenkrais which is a type of movement therapy. I found some free audio lessons online (you can find the link here) and I followed a lesson about turning your head around to look back (it's lesson #6 under the 2011 tab) and I thought: wow! this is really simple but quite powerful. I was intrigued and booked N to have a few lessons with a lovely Feldenkrais practitioner called Hannah Wheeler. The lessons were interesting but the times available were quite limited and when N started school I had to find an alternative. Hannah had told me about a book called "Kids Beyond Limits" by Anat Baniel who had developed a therapy that she called the Anat Baniel Method (ABM), based on Feldenkrais. I thought the book was great and it was the first time I read a book about cerebral palsy or therapies that didn't make me feel depressed at the end. I thought the theory behind it made sense and I really wanted to give it a try so I found Doreen, an ABM practitioner that was based not too far from us. N's been seeing her for about a year and a half, at first once a week and now we try to see her twice a week. Is it a miracle cure? Does N now magically sit and stand? No. But she's getting better and I can see the improvements right in front of me when Doreen's working with her and I see the small changes that have been accumulating over time. It can be difficult sometimes to explain the benefits because for all intents and purposes major milestones have not been achieved but we can see small and powerful changes and so we persevere. 

At around 1 year old

She's always loved water and swimming

Wearing an eye patch is NOT one of her favourite things, and can you blame her?

I do my best to continue Doreen's good work at home but this is not an easy task in many ways. My knowledge is obviously limited and so I have only the things I can learn from watching and my instinct as a mother to rely on. Then there is also the fact the it's very easy for play to lose all fun very quickly when everything has an ulterior purpose. Sometimes when we're playing I find myself constantly trying to come up with ways to make things "better" for N, to help her learn: the box should go on the left so she can look more to the left and straighten herself, the book should be a bit higher to encourage her to look up, she could hold the (toy!) syringe with her left hand and push the plunger with her right hand to help her learn to use both hands... The list goes on and in the middle of all of these things I'm still trying to physically help and support her so that she can sit up or roll around or stand... Some days she seems really relaxed and she finds the right positions to keep herself stable, other days she just doesn't manage to hold her head or her trunk and I'm left with a pretty heavy weight in my arms and the sinking feeling that I'm trying to achieve the impossible... Emotionally, it is very difficult to deal with the frustration I feel when faced with this seemingly erratic behaviour. I quickly go from 'Why is she not holding her head??!' to 'I must be doing something wrong/not enough because she is regressing'. I think that ultimately it is probably just the way things are, people are not always in the mood and I cannot pretend to know what it feels like to be in her shoes, wanting to do something and your whole body not responding the way you want it, having to carve new pathways in your brain for even the simplest tasks... 

In a pretty Summer dress at 1 1/2 years old

The hair band was on for about 10 seconds but doesn't she look cute?

 My big fluffy bunny all tucked in and ready for the snow

And this is where I think the balance between the two extremes I mentioned before becomes really important. Sometimes you need to just let things be. I remember talking to N's occupational therapist a while ago and saying: 'Today I put the little box of animals in front of her and just let her play with them. I didn't ask her what they were, if she could sign for them, find the matching pair... I just let her grab, chew and bang them around'. This might seem ridiculous but it really isn't easy to turn off "must help N get better!" mode. And then there is also something that I think about a lot: "Perfection is not required". N doesn't need to sit, stand and walk to be happy. She's not a broken appliance that needs to be fixed because it is otherwise useless, she's not someone who isn't good enough. She's a wonderful little girl who is very patient and loving and kind. All she ever wants is a bit of attention, a cuddle and kiss. I couldn't have asked for a sweeter daughter and, needless to say, I love her just the way she is. But I think that the danger with being overly committed to progress and improvement is that I might pass on to her a underlying feeling that she isn't good enough, that she needs to be fixed, that she's broken... So I try to maintain a balance between being the therapist and being the mum and I can only hope that she can grow up to be a wonderful woman, confident and in acceptance of who she is and ultimately, happy. 

In this supermarket things are always expensive! And you need to tip the cashier at the end ;)

  And here she is, my big girl Natalie

15 minutes a day...

I have to admit, I'm losing my battle with time... I just never seem to have enough of it to do the things I need, let alone the things I want to do, and it's really starting to get to me.

I've always thought that I was pretty organised and not so bad at managing my time but I clearly do not have enough skill. By the time the girls are in bed, my "free time" is either spent running around 'getting things done' or in a semi vegetative state, slouched in the sofa with no energy left to move (or, lets face it, just plain asleep).

Well, I'm trying to be better at deciding what really needs to be done and when, and also trying to get more help with things like cleaning or doing the dishes (dreaming of a dishwasher...). I don't want to spend my weekends cleaning, doing the laundry, sorting through paperwork...I want to be able to get some of that stuff done but also just chill out with T and play with the girls... To be honest, I still manage to do the fun stuff most times, but then there's a certain feeling of desperation when I look around and the house is completely upside down (is this one of those Portuguese expressions that doesn't work in English?, not sure anymore...).

This is the only type of  mess I can cope with!

I want to have time to read books (and comics if T has anything to say in the matter), to design and make jewellery, phone friends, write emails and sometimes just be a bit lazy and sleep. I guess that's the other problem: I never seem to get enough sleep and I feel like my brain is just gradually shutting down because it can't cope with my life right now.

So... as part of my new plan to get more of the things I want to do done, I'm going to start dedicating 15 minutes a day to the blog. Let's see if it works and I manage to write more.

Something has to change so that maybe I can start feeling a little bit less overwhelmed by my daily chores, less of a robot that goes through the motions and more of a person that has a life of her own, beyond a house and two children.

Sunflower(s) in bloom

It's been a long time since I've written a post and I have to say I really missed it... N's health was a bit of a concern during July and that was enough to turn everything upside down and change priorities. It's funny to realise that since the blog is something I do for myself, it immediately falls off the radar as soon as there's lots to do. I really need to change that, but that's a topic for another post...

Now that the Summer is over, I just wanted to update you on N's little sunflowers. Back in May we planted some sunflower seeds (see older post) and this is how we got on since then:

When the seedlings were big enough we transferred them to a bigger pot.

N added a little windmill to keep the flowers entertained

N had a bit of help watering the plants

"Here are my sunflower plants!"- said N

We had a few watering sessions once in a while (only these two survived, the one on the left... well that barely qualifies as surviving...)

"It's always more fun to water the floor mummy! Things don't always have to make sense ;)"

"Give me a hug daddy, all this gardening has drained me out!"

And here it is, and I think it looks just beautiful!

It was an interesting coincidence that the only plant to blossom into a proper flower was the first one that N planted herself (it was easy to keep track of which one that was because it had lost a leaf). Maybe little N has been blessed with green fingers. She didn't get them from me, if her daddy is to be believed...

Career vs. Motherhood: will this be a fight to the death?

I have never considered myself a particularly career-driven person. My work has always been important but it has never been the most important thing in my life. Career building has always been secondary to me doing what I like, what I'm (hopefully) good at. I was about 14 when I started becoming interested in science and medical research. A good (scientist) friend of mine once told me that he worked in research not because he had a burning desire to cure diseases but because he had a very curious mind and always wanted to know and understand more. I've always been a bit more sentimental... and naive, perhaps. I had big dreams of finding some miracle cure, of making a difference...

In the name of these big dreams, when I was 17 I left the small Portuguese town where I had lived my whole life and moved to Scotland to start a science degree. These were difficult times because I was so young and it was such a major change. After all, I'd always lived in the same house/room my whole life and all of the sudden I was somewhere completely new, where nobody even spoke my language (and were these Glaswegians even speaking English?? I did wonder sometimes...). I felt extremely lonely and the fact that the weather was so miserable and wet all the time didn't help me feel any better. But I persevered because I knew that if I went back home I might not be lonely anymore but I wouldn't be happy. I would be stuck doing some boring general biology course and probably end up as a school teacher which I knew was not my calling. I might not have been career obsessed but I still wanted to have a job that I loved, to work on something I could really enjoy. During my degree at Glasgow University I became really interested in Immunology and the more I studied it, the more I realised how much was still unknown and that fascinated me. I had always enjoyed lab work and at this point, doing real research as part of my final degree project, I couldn't imagine myself doing any other job.

Early days with T in Glasgow

Bachelor graduation

I finished my Bachelor's degree and the natural progression, if you want to have a career in scientific research, is to do a PhD so I moved to London to start working on my thesis project. Again, it was a very difficult move because my boyfriend was still living in Scotland and I hardly knew anyone in London. In the end it was a case of 'what doesn't kill you makes you stronger' and I earned my PhD (literally) at the cost of much blood (as you can see by the picture below), and also sweat and tears!!

The wonderful stitches done by a plastic surgeon that repaired a tendon on my thumb after I accidentally sliced it through with a scalpel during my PhD...

It felt at the time (and still does) like a tremendous achievement because I worked so hard, because it was so difficult and because I learnt a LOT! And not just about science but about people and sadly also about the politics of science and academia.

My PhD graduation. I wish I could go back in time (to the time when I was writing up my thesis) and tell myself that it was all going to be ok and that soon I would be taking pictures with a silly hat and the biggest smile... that I didn't need to worry and despair so much about it...

After my PhD I started working as a Post-doc doing exactly what I wanted, combining Immunology and Cancer research. I've had lots of relatives who have suffered with cancer and to be involved in the search for better cancer treatments was something that really meant a lot to me. It was hard work but I enjoyed it. I remember saying during my interview at the time that I didn't go to work because I had to, it was because I really enjoyed what I did for a living. What I loved about it was the need to be creative, the challenge of designing and planning new experiments in an attempt to answer all these burning questions about why cancer is so hard to get rid of. I was also lucky to have worked with some really nice people, which only made the whole thing better.

At work during my Post-Doc. I was in my element and I would be lying if I said I didn't miss those days.

Then I got pregnant. No change of plans so far, I was expecting identical twin girls and the plan was to stay at home with them for about 8 months and then go back to work. But then life happened and my little girls were born at 23 weeks and 2 days... Work? What's that? I couldn't think of anything else but my babies and I was lucky enough to have a boss that was very supportive and completely understood that I needed to be there for my girls. We spent five months in hospital and in the end I came home, not happily pushing a double buggy as I had pictured in my daydreams. Instead I was only able to bring home one very bruised and scared little baby, lying alone in her single buggy because her sister now lived only in my heart. It took a long time for these wounds to heal (will they ever really heal?) and for life to acquire some kind of normality again.

With N after she came home.

As N grew up during her first year of life she didn't develop like an ordinary child but I couldn't be sure if it was only because of what she had been through in hospital or if there was something fundamentally different about her. She was diagnosed with quadriplegic cerebral palsy at around her first birthday and at that point I decided I wasn't going back to work, not for a while anyway. This was not an easy decision. I may not have been typically career driven, but I enjoyed my work, I had worked very hard to get to where I was and I had my own dreams... Leader of a research group, perhaps? I had always thought that it would be great to be the driving force of a group of people working towards the same goal and to be more in control of the direction of my research. Well, those dreams would have to be put on hold. But I was still young, I thought, I could have a break and pick up from where I left at some point. At that point it was clear to me that I should be there for N. She had fought so hard to survive and she made such an effort to learn new things... She just needed (a lot of) help and attention and I was sure in my heart that I didn't want to have a career at the cost of her care. It was much more important to be able to look back one day, regardless of what N might or might not have achieved, and be able to say to myself truthfully that I did the best I could for her.

N when she was one.

And here I am, 2 and half years on and I'm not planning to go back to work in a lab anytime soon. At the moment, my other little one (A) is the perfect excuse because she's only 4 months old but, to be honest, the truth is I don't see how I could ever make it work. I can hardly cope with all the things that I have to do as it is, how would I be able to do all this AND a job? Especially research, which isn't your typical 9 to 5 job. All I know is that I wouldn't want to be doing it halfheartedly. When I do something I try to commit to it and that takes time and dedication. I remember T asking me once, shortly after he moved to London with me and I was still doing my PhD: "Are you seeing someone else? Why are you always coming home so late from work?". No, I wasn't seeing someone else! That was just lab work and sometimes you become a slave to your experiments because if the cells need to be fed on a Sunday then it's got to be done... Am I making it sound like a terrible job? It's not so bad!

The reality of my life is that I have little N, who goes to school from 9-3pm and has a bunch of therapy and doctors appointments. Who would give me a job when I would have to take time off every week, sometimes more than once, to take her to her appointments? And it's not just the girls, it's T too. When would we get to spend time together? I really feel that, at least for me and at this moment, I'm a woman who just can't have it all... So I choose being a mum.

N & T- this is where I want to be right now so I'm going to make the most of this opportunity

What will the future hold, I wonder? I don't want to be a housewife for the next 20 years and end up feeling like I've got nothing of my own when my daughters grow up and become independent. I'm going to have to find something that is my own personal project, something that I can do for myself but that will still work with my busy family schedule...

Watch this space ;)

My favourite chocolate cupcakes

I've had a love of baking ever since I was a child but I guess back then I never did much more than just licking the bowl... I  still have a little recipe book called: "My First Recipes: Sweet Things" that I got when I was about 9 and I used to love going through it and planning recipes. Sadly, they never turned out quite right... I'll never forget some iced butter biscuits I made once that tasted (and felt) like they were made out of cement!
A few years later, at Uni, I bought my first electric mixer (that I still use!) and slowly but steadily I've been learning to bake a few things here and there. It's all helped by shows like the "Great British Bake Off" (big fan!) and the fact that my husband will eat pretty much anything I bake and has quite a sweet tooth.

N is always quite keen to "help" in the kitchen and so we bake together sometimes. We were very fortunate to have some switch equipment donated to her by the 'Handicapped Childrens Action Group' charity which has helped to get her even more involved. N uses switches to play computer games, operate electronic toys or even turn the electric mixer on and off. They're basically big push buttons that she can press more easily than the buttons on certain toys, computer mouse or even the electric mixer. We have a special mains controller to which the mixer and the switches are plugged and so she uses the yellow switch to turn the mixer on and the red for off. We first used it for her to turn a light on/off, then the Christmas lights, hairdryer, fan... Endless fun when you're a child!

So I wanted to share with you my favourite chocolate cupcake recipe with the help of my lovely baking assistant Miss N. These cupcakes are very soft and fluffy and the contrast of the sweet cake with the slight bitterness of the dark chocolate in the icing is just irresistible!

Look at me being all messy and not getting into trouble for it!

Ingredients:

- 25g of Options Belgian Hot Chocolate powder (I didn't have cocoa the first time I made these and so used my instant hot chocolate powder instead. I loved it so much that I never changed back to cocoa)

- 50 g diced unsalted butter

- 100g caster sugar

- 1 medium egg

- 85g plain flour

- 1/2 tsp bicarbonate of soda

- 1/4 tsp baking powder

And for the icing:

- 50ml double cream

- 50g dark chocolate (60%)

1. Line cupcake tins with paper cupcake cases.

2. Pour 100ml of boiling water over the cocoa in a small bowl and whisk until smooth then leave to cool at room temperature.

3. Cream the butter and the sugar until pale (turn the oven to 180°C)

4. Incorporate the egg, then the dry ingredients and finally the liquid cocoa.

5. Bake the cupcakes for about 15 min and then leave to cool on a cake rack.

6. For the icing, bring the cream to the boil, remove from the hob and add the chocolate so that it will melt into a glossy cream. Drop about a teaspoon of icing on top of each cupcake and enjoy!!

And now, just to recap:

First we add the butter

Then we add the sugar

I'm the switch master!!

But I like to hold the mixer too!

Then comes the flour

Do I have something on my face?

Quick mix of the cocoa

And a sneaky taste, just to make sure

One final mix and the batter is ready

Into the cupcake cases

How did it get on my nose?

Ready to eat!

Yummy!

Finally, the joy of breastfeeding

Being able to breastfeed my babies was always something close to my heart, something I always wished I would be able to do when I had my children. Unfortunately, things didn't go according to plan after my first pregnancy. My identical twin girls were born at 23 weeks and 2 days and life was pretty much a continuous nightmare for the first five months. My youngest twin, Isabella, lived only for two days and N went through five tough months during which she had to continuously fight to survive. Towards the end of her hospital stay I started trying to breastfeed her but it really wasn't easy. Poor thing, she was eager, but she was so very small!! To make matters worse she has a facial palsy (paralysis) on the left side of her face so it was extremely difficult for her to latch on...

In the end I decided to express my milk and give it to her in a bottle because at least that way we could put our fingers on the corners of her mouth to help her create some suction. By that point I had become an expert in the 'art of expressing milk'. It started the day she was born, just a few mls of hand expressed milk but by the second day, with the help of my trusted pump, I was starting to produce some good quantities. I was terrified of not having enough milk for my girls. I had read in the "Baby Whisperer" book that if you only express milk without breastfeeding the baby, you lose your milk supply after a few weeks. How was I going to do it?? Not to mention how important it seemed to be to have skin to skin contact. This was simply not an option at this point and I was only able to hold N when she was 11 days old.

Holding N for the first time

As it turns out, these things might be helpful but they weren't essential and I managed to feed N with my expressed milk until she was nearly one year old. For me the important thing was to be consistent and I religiously expressed milk from both sides every four hours, 20 minutes each, even if there wasn't much coming out towards the end, at least there was bit of stimulation. And things worked so well that at one point I was expressing about 2 litres of milk a day! Unfortunately N had lots of issues with her gut and didn't really feed orally properly until she was 3 and half months old. Up until that point it was always building up from 0.5ml/1ml every hour for a few days until the next infection when we would hear the dreadful words: "She's nil by mouth" which meant none of mummy's milk for my little girl. It was horrible. I was working so hard to make this milk for her (there was not much else I could do for her) and she couldn't have it... 

My freezer at home was completely full of frozen breastmilk and I ended up donating milk to St. Thomas hospital (until they told me they couldn't process any more of my milk) and Queen Charlotte's & Chelsea hospital milk banks. At least someone could have that milk. I also knew from the mothers around me in the neonatal unit that many struggled to have enough milk for their babies; it's not easy when you're living under such stress and these premature babies really benefit from having breastmilk.

Fortunately, A's birth was as good as anyone could hope and even though she didn't drink much milk in the first couple of days (neither of us had a clue about what to do...) she caught on pretty quickly and started gaining weight. My problem in the early weeks was thinking that she needed to eat for 20 minutes or else she wasn't having enough. To this day she's usually done in about 10-15 minutes and I guess it was important to learn that you need to get to know your baby. 

I'm loving being able to breastfeed her. She's 3 months old and she is always very cute with her smiles and her little chubby hands holding on to my breast. Things are so much easier this time around! Apart from having mastitis when she was one week old (scary and very, very painful...) being able to just go out and know that I can feed her anywhere has been great. With N the routine was more like feeding for an hour, expressing for 40 minutes, washing and sterilising pump and bottles and then... oh wait, it's time for the next feed...

Knowing what I know now I would never choose to express milk and feed from a bottle as a routine although I might do it eventually so that I can a have a break from the constant feeding. For the moment though, it's still really nice... just not at 2am, or 4am...