About parenthood

About parenthood

I have been thinking about being a parent as a role  parenthood as a concept a lot lately. Firstly, as it was mother’s day here in the UK quite recently and secondly, as my own parents are visiting after months of having been on a flying ban due to my mum having had a hip replacement.

It is a given that being  a parent tends to be a big deal for most people. It can change your perspective, it can make you grow up. It can make you able to deal with all these disgusting bodily fluids of these little people in a way that makes your former, childfree self gag in disgust (if you told me to try to catch someone’s  vomit with my bare hands few years back I would have told you to F off. Now I reckon Freya and I could enter into some sort of a championships as serious contenders).

As it often is, our expectations of how it would be differ from what is actually has been like. Our journey as parents has been a million miles from what we expected, but I think happens to those with medically typical kids too.

The joys of parenthood often are portrayed as this “love at first sight ever lasting devotion” type of thing and people feel quite pressurised to have this experience, even if your own feelings inside do not match the ideal.  For example, with me, when Freya was born I mainly felt confused and completely knackered (it had been a long process to evict her from my belly). She was whisked away, no one really knew what was going on (or at least told me) and I was dumped in the maternity ward in middle of these new mums with their babies. At which point,  I felt confused, knackered and more profoundly miserable than I ever had before.

In the following weeks we got into a weird routine of having a baby in hospital, not being able to take her out, feed her or even to hold her when we wanted. It was a period of intense emotional turmoil, feeling of constantly being not only pushed beyond comfort zones, but scarily close to breaking point. And I can now admit it –  it was hard to bond with her, when I felt that my world was crumbling around me.

I know most new parents are scared of breaking their new baby, but when you have a seriously ill child the anxiety caused by having to perform life saving medical procedures on your own child is petrifying. It seemed as our lives were becoming endless parade of bad news, various professionals and heavily medicalised existance whether we were at home or at hospital. For me, I think in many ways in the early days Freya often felt like a job rather than my child. One very demanding, snotty job that liked pooing a lot and riding around in ambulances.  But slowly the balance started shifting.

I now realise, whether your kid is medically complex or not, that the bond you develop with them builds up over time. For some it’s created the moment your baby is born, for others it takes time. For some it never happens, and for others that bond will be broken later. Most are just too embarassed to admit that it’s not as simple as we are all made to believe.

Being a parent is a lot harder than it looks. I think this is something most parents admit. It is universal truth, albeit not as often admitted aloud, that majority of kids are little shits. They are unreasonably demanding and have some really stupid ideas. Us as parents have to live with this, partly because we have to and partly because it’s mesmerising and highly addictive seeing glimpses of yourself grow up in front of you in this little tyrant. So you persist, enjoy their folly and hope one day they grow up to be somewhat reasonable human beings.

Being a parent to a medically complex kid has its additional challenges, main one being keeping them alive – and learning to live with knowledge that there is a higher chance than you’d like that you will outlive your child. And that is where the real challenge lies – learning to live and love however precarious the future may seem to you. It is impossible not to dwell on the unfairness of your child being seriously ill, but you have to try to push past it.  Being a medical parent is hard- a bit like being in a very long boxing match with multiple opponents – but you need to breath a bit between rounds or your life simply becomes unbearable.

Lessons learnt? To be flexible and kind to yourself. Often things don’t turn out as you think in your head and you should not punish yourself for it. Don’t impose a strict regime of achievement for your family – it’s just going to make everyone’s life a lot less fun. In our house we have some “non-negotiables”, like breathing, but it is a lot less important to us whether Freya meets her developmental milestones in a textbook timetable. We know she will get there, it might just take her a little longer. Try to get a healthy balance in your life. People sometimes get completely swallowed up by being a parent and seem that their whole identity is about being one. As having a medically complex child is so all-consuming it does take over every aspect of your life.  But try to find time to enjoy grown-up stuff too and enjoys yourself. Being a parent may be the most important job of your life, but we are all other things too. Enjoy!  Kids are crazy little beings that can really open your eyes to the world in many ways. Whether you kids are medically typical or not you are likely to have up and downs and even if all goes well they grow up so quickly- so enjoy them!

P.S. Freya update. We had a couple of days at hospital to have her jaw distractors out. The op went well, but the surgeon thought it would not be useful to add on any further distractors in.  The distraction has worked well to an extent but we are still miles off having a reasonable airway. So, it’s back to the drawing board and hopefully our surgeon will come up with a good plan how we can further work on Freya’s mouth opening. In the meantime we have been discharged and Freya is enjoying driving her little moped around the garden!

About losses… and gains

About losses… and gains

I’ve been quiet on the blog front recently as it’s just been busy. We’ve had a bunch of outpatient appointments. Freya got an infection in one of her jaw distractors, some sort of upper airway bug and an ear infection. It’s taken us over three weeks to shake these off, and although we are pleased she has not needed to be hospitalised she’s on high dose of antibiotics and not quite her happy self and we are constantly on amber alert. Not fun.

I have also been writing a blog entry about cuts and how these are affecting families like ours, a topic that will require some more consideration and craft before I air it. But the other day I was feeling particularly envious of those whose lives are not as medically complex as ours and it got me thinking not only about what we have missed out on, but what we have gained in the crazy last two years.

We have missed out on a bunch of “normal” baby experiences. From the very beginning our life with our baby was different. There were no cuddles after birth, no estatic rush of happiness and love people say they are overcome by when their child makes their debut in this world.  Instead we had emergency alarms, chest compressions, fear and confusion.

We spent weeks in hospitals, waited anxiously for test results. Freya was month and a half before we could even take her home. For a long time there were no visits to relatives’ homes, no playdates. We still have not been able to take her to children’s clubs or many activities. It’s not that we can’t take her to places, but it’s hard work with all the equipment. It’s scary being away from our controlled environment where we have emergency protocols in place. Where your day to day life requires you to regularly push past your comfort zone it can be difficult to embrace further challenges. It’s also a risk management question. With us being on constantly working towards next operation date a bug can set us back months.

On the other hand we’ve gained an opportunity to bond with our daughter in a way we wouldn’t have if she was medically typical.  I would have returned to work, Freya would be in a nursery. Life would be more fast paced, more varied and we would certainly have more opportunities and options (loss of which I do miss), but we would have lost the opportunity to spend as much time with Freya as we do now. Toddlers are crazy little people full of mischief and adventure and having less duties outside our home has given me ability to enjoy watch Freya grow. As acknowledging loss in its many forms is a reality for us, we try to celebrate the gains. The bugs managed at home, new makaton signs learnt. That fact she has exceeded so many expectations (including ours) and that through pure determination and will she is meeting milestone after another. Where we are all a lot less mobile we try to enjoy ourself at home, having good food and good friends visiting us (some even across oceans!).

We’ve lost a lot of trust we previously placed on professionals. When Freya was first born I thought everyone wanted to help; surely they would do their best to aid those faced with spirit crushing news of a child being so gravely ill?  Yes, in principle and if it was not too complicated and cheap (preferably free). We found that particularly getting services at home was a nightmare; if it cost money and effort many would rather fob you off than help you, however desperate you felt.

Am I disillusioned and angry? Yes. Am I tarnishing everyone with the same brush, forgetting countless professionals who have made superhuman efforts to help us? Probably more than I am willing to admit (there are so many that we are forever indebted to for helping us along!)

I am not saying all professionals are bad, I am saying the position where we view them from has changed:whereas before if a mistake was made we would think it was an accident; now that benefit of doubt is gone. And this maybe the gain in it all; being more savvy; having the confidence to question; daring to argue; having the strength to fight.

We’ve lost faith in some sort of universal fairness. I am not a particularly religious person. In many ways, I’ve had quite a blessed existance and faced little hardship in my life. I’ve always had a strong sense of justice, perhaps a reason that attracted me to work in the legal industry in the first place. I don’t think I was particularly naive, but still harboured an idea of some sort of universal fairness, belief that though ups and downs everything would always end up OK in the end.

In many ways our journey over the last two years has opened my eyes to the striking unfairness that lurks around us. The world is a bleaker place than it used to be. We’ve witnessed too many little people not making it. Too many families broken by illness and death. Too many people let down by the system, too many lives irrevocably changed.

The gain? I suppose it is a question is whether you would rather have a more accurate view of the world and the human existance, even if it can be unfair and outright disturbing, or have somewhat a distorted view of it, happier, but partly blind to the suffering that is so intrinsically part of the human condition.

Having Freya has made me grow up more than any other experience I have had. It’s made us stronger as people, but also weaker, more vulnerable. Would I chose this life? Hell no. No one of us can fully control the losses and gains in our lives. But we can – at least aspire to – choose by which of them we define ourselves.

P.S. As you can see from the photo the little lady is walking. Despite her medical issues she is hitting milestones like a champ – walking, jumping and becoming pretty awesome at Makaton. We couldn’t be prouder!

Of caregiver fatigue

Of caregiver fatigue

January always feels like the longest month and this year has been no exception. Freya has been doing well, whizzing around the flat with her little trolley and being full of mischief (she’s recently discovered the joys of dropping things in the toilet bowl. Must be a genetically programmed milestone for toddlers, and yet another task that makes parents of toddlers immune to the grossness of our daily lives). Freya’s jaw operation got cancelled as there was no room at the inn, but after initial dissapointment I have been trying to rationalise it being a good thing, January being smack in the middle of snot season and hospitals being full of sick people. Winter 16/17 has kicked off a lot better for us bugwise than the last one and that is how we would like to keep it, thank you very much.

Despite a relatively good start to the year I have been feeling restless and tired. I’ve been feeling a bit stir crazy also as we had a week of self imposed isolation before Freya’s op day to avoid cancellation due to a bug.

Whereas the speed of our lives is slow it does not lack stress or anxiety. I hate the fact that with a sick kid you never know when you next end up to intensive care. When you get hospitalised you never know if it’s for for 5 days or 5 months. And then there are even the scarier thoughts – when do bugs turn to definate step backs? And will our luck, at some point, run out?
It’s physically tiring looking after a medically complex kiddo. It’s emotionally tiring carrying around all these unresolved anxieties and emotions. It’s clear – my January blues has a big dose of care giver fatigue mixed in it. Here’s some things that help me recharge.

1. Eating well

Good advice for anyone, right? Even more so if you are a caregiver. With a trachy vented child there is  very little downtime for us parents- we need to keep an eye on Freya at all times in case her tracheostomy gets blocked, pops out or she gets herself in a pickle (she can’t make any noises so can’t cry or shout for help). We get help, but being a trachy parent is a 24 / 7 job.

Whereas keeping Freya bugfree is our absolute priority, us parents are a good second. Our daily routine is challenging enough without physically feeling crap. So this time if the year I try to get more fruit and veg in. Plenty of garlic, ginger, chilli and tumeric. Home made black elderberry syrup. And , of course, lemon with everything.

There are shortterm considerations, but also some long term ones. When Freya is ill and/or during long hospitalisations we are at the eye of the storm. We try to get through each day as well as we can and eating becomes much more of a “grab-what-you-can-when-you-can” thing. After hours and days by the bedside it can also become a comfort thing – an opportunity to have a break, something comforting in a time of high pitched continuous stress. Now at home we have better opportunity to eat well and try to drop off extra pounds gained over Christmas and months in hospital (I blame you Lagoon chips!). After all, one of the biggest anxieties of any parent of a chronically ill child is what would happen to them if we were not well enough to look after them. Minimising risk factors for developing chronic conditions ourselves takes a renewed importance when you have someone so dependant on you.

2. Zzzzzzzzzzzzz

We are lucky to have 7 nights of overnight care for Freya. That means, in theory, we get regular sleep, although with cancellations anxieties about leaving your child’s life in someone else’s hands affect both quantity and quality of that sleep.

It is a given that having kids and being sleep deprived go hand in hand. Arguably having someone looking after your kid overnight can sound heavenly to someone with a medically normal kid with sleeping issues. And for us it is a lifesaver. There is no way we could function if we didn’t get help. But with services being cut there are many families who don’t get the same help. We have certainly had to fight for ours (a topic I have touched upon in my previous blog entries).

Lack of sleep affects me immediately in a very negative way. I feel nauseous, I feel down. I struggle to deal with the curveballs trachy life serves us on regular basis. To avoid feeling completely exhausted I try to concentrate on both quantity – getting extra sleep when I can (I love a good nap!) – and – quality -improving the quality of the sleep I get by cutting down on caffeine in the evenings, doing relaxation exercises at bedtime and simply trying not to stay up too late.

3. Give yourself a break – and asking for help when you need it

Having a chronically ill child completely takes over your life. It is clear who is the boss in our household – everything we do is carefully planned around Freya and we know that any plans we do can be changed at last minute. That is just how it is for now.

It has taken me a long time to be able to take a break from my role as a caregiver. In the beginning Freya literally lived in the hospital and I would have a routine of 10 to 10 to be with her. Now at home we don’t really get any help during daytime, so one of us needs to be with her at all times. And for a long time I had a hard time taking time off.

Don’t get me wrong, I love my baby girl but it is important to have a break. Go out, enjoy lunch with friends. Have a spa day. Go to a yoga class. See a film. Eat steak and drink red wine.

As important as being able to detach yourself is to be able to recognise when you feel you are edging towards the point when you REALLY need a break, and then, being able to ask for help. Asking for help can be the hardest part – the key of making it easier is to surround yourself with people who are not only keen to help, but are keen to make time for you when you need it, not just when they have a free evening after work or they happen to have a couple hours to kill. Don’t get me wrong – those kinds of visit are great, but what you really need is someone who will come running when you need them. After all, the crisis and catastrophes in our lives do not pencil themselves in politely in advance.

Under this heading I cannot stress enough the importance of getting a suitable care package in place. Do your research, speak to other parents of medically complex kids, contact charities with helplines (www.cafamily.org is one specialising in children). Make sure you will get help from both social services and education if you are due some. And it may well be that I sound paranoid and jaded, but if someone tells you that you are not entitled to something check whether they are actually telling the truth. As sad and deplorable it is, there is a real culture of misinformation and lies when it comes to local authorities properly funding care of chronically ill children. Getting the right package in place can be difference between surviving and living. With the right kind of support families with special needs children can thrive – both the kids and the parents!

4. Incorporate more things you enjoy in your day-to-day life

It is hard to even start to describe how your life changes when you become a full time caregiver to someone.  Sometimes weeks go by until I get an opportunity to leave the house without Freya. If she is ill, it means anything and everything else gets dropped when we work our hardest to keep her out of hospital. I still have not have managed to leave London since she was born. Going to the movies, going on holidays, visiting friends or family….Even  having an anniversary dinner – all these “normal” activities become SO difficult – even impossible.

I don’t like to dwell on what I miss from my past life – I find dwelling on things generally counterproductive – so I’ve tried to introduce smaller things in my life that I enjoy.  Doing 20 minute yoga exercises from youtube. Listening to books on audible. Buying art stuff from the pound shop and having a go at painting. Cooking, a lot, and trying out new dishes and cuisines. Discovering new series on Netflix. Reading. Writing. You know the kind of stuff I used to enjoy before I worked all the time.

As January draws to a close I hope  my January caregiver fatigue will diminish too. Got some good tips to unwind? Let me know! Suffering from carergiver fatigue yourself? Try to find 10 minutes today for just yourself. Give yourself praise. Check out that the bars you have set for yourself are not too high; looking after someone chronically and seriously ill is hard and relentless – make sure you aren’t being so on yourself.

Time

Time

“There is only one thing more precious than time and that’s who we spend it on” Leo Christopher

I’ve been quiet on the blog front lately, not for any other reason that just because I have been busy. Freya caught an infection and we spent a couple of days in PICU. We had a wonderful Christmas at home with our friends and I spent a lot of time googling how to make Finnish Christmas food (I swear you need a PHD in chemistry to get perunalaatikko right). Any then I lost the charger to my laptop. But as 2016 draws to an end I wanted to write this entry.  It’s about the concept of time – another word Freya has redefined for me.

Freya has introduced me to long waits. 140 hours of contractions. 22 hours from her being pulled out of my stomach to me holding her. Month and a half until we could finally bring her home.  318 days in hospital during her first year of life.  Longest wait in resus until we got retrieved? 12 hours. Longest we have ever had her home – in one go – without hospital admission? 67 days. Sometimes, the time stops and every second feels like an eternity. When the monitors are beeping and the values flashing are critical. Will her oxygen levels pick up, or will this be it? The anxious hours of waiting during operations (even during the last one when we were just so exhausted that we fell asleep in the park).  This little lady likes to make us wait.

Time will heal most things, if you let it. The world is full of people who have defied the odds and gone on to live full lives after illness, war, losing those they love. Whereas pain and loss is something that becomes intrinsically part of us, it won’t necessarily be the stuff that defines us.  The resilience of human spirit is truly inspiring and lives inside all of us. First months after Freya’s prognosis were the hardest of my life. The only thing that kept me going was that there was this little person who needed mum and dad and that we needed to be there for her. But with time it got easier. It’s not Freya’s fault she was born with little jaw and wonky ribs – as any other baby she deserved parents who love her and surround her with laughter and joy. And as time passed that love, laughter and joy grew and started pushing out the fear and bitterness. I’m not saying it’s all honky dory now, but what I’m saying is that it generally easier than it was before. So, however much something hurts now, the odds are that next year it will hurt less. Or in 10 years.  Still not convinced? However bad it is, in 100 years’ time you won’t be around to worry about it!

Time is precious and limited. I think it is easy to forget this.  We get busy with our lives and chores and forget to appreciate what is in front of us. Stuck at a job you don’t like? Get another one. Think you are too fat / thin / flabby? Get a regime in place. Negative people around you bringing you down? Ditch them. Change isn’t easy and can take a lot of work, but ultimately it is you who holds the reigns on this one. Will you succeed every time? Hell no, but at least you tried.  Whenever you can fill your days with doing things you love and people who make you smile. If you can’t find goodness and joy in your day-to-day life you are destined for a lifetime of grumpiness and feeling inadequate. Saying that though I do not mean that you need to get through every obstacle in life by grinning and bearing it. We all need help sometimes and if you do feel that you are stuck in a rut and nothing is getting better then seeking help is the most important first step you can take.

Freya’s taught me about the importance of today. Quite frankly I, like a lot of parents of chronically sick children, do not have the luxury of dwelling in yesterday. Yes, there are experiences – good, bad and ugly – that will always be with me, but dwelling in them rarely achieves anything else than anxiety and heartache. I could think about how our lives could be so different had we chosen different roads when we faced junctions in the past, but, again, that won’t get me anywhere.

Similarly, I rarely allow myself to think about tomorrow. Yes, things could become easier – in her short life Freya has already proven so many people wrong and keeps surprising us all with her resilience every day. Even in the tiny little cerebrocostomandibular syndrome community there are many who fight and keep beating odds stacked against them and this inspires me greatly. Medicine advances every day. How our bodies adapt and grow around the anomalies nature has thrown our way is simply astounding and well beyond human comprehension.  So, I hold onto hope, and keep my mind and heart open for miracles. But l also know that the road in front of us will, at times, be hard and there will be no guarantees one way or another.

Let me tell you a secret – those guarantees do not exist for anyone else either. None of us escape loss and pain in our lives. Some just have it higher on the richter scale. What Freya has taught me that today is the day look after and celebrate those you love. Today is the day to laugh and to find joy in our lives. The biggest tragedy we face in our lives is not sickness, not even losing people we love. It is stopping living our lives because we are scared or disappointed with the cards life has dealt us.  So, as new year approaches celebrate your life and the stars you have in it.  May 2017 be the year you reach for your dreams!

P.s. One more reason why I haven’t blogged for a while is because I was busy writing another article for the Complex child magazine. It comes out on 2 January – check it out at: http://complexchild.org/

Listen to the mama bear

Listen to the mama bear

It’s December and I am cautiously getting in the Christmas mood. We have had a good autumn, with just one emergency admission and managing little lady and winter bugs at home. But I do not want to get too excited, as I know that any little blip can land us at hospital over the holidays. Particularly after what happened last year.

This is Freya’s second Christmas. Last year we had just come home from Great Ormond Street and lasted until Christmas Day evening when we had to call an ambulance as Freya was struggling to keep her oxygen saturations up. A minor cold turned into a difficult 40 or so hours at Whittington, and the scariest time of our lives when Freya fought for her life in intensive care for weeks afterwards. And what Whittington showed me was  how the care of a medically complex child can go so SO wrong if you don’t properly listen to the experts. That is, you must listen to the mama and daddy bear.

So  back to the story – Christmas day we landed at the A&E. We got seen quickly, it looked like we’d have stay in for a day or two, plans were being made and discussed. All fairly straightforward and efficient I thought, congratulating myself for having chosen Whittington as our new local hospital.

Then everything just went down the hill. They could not find a ventilator. In the meantime they did not think that my pleas to get Freya on some humified o2 was relevant, so they just ignored me. They could not find the right mask for nebulisers, so they just gave up looking. They cannulated Freya and stopped feeds, but did not bother to give her fluids for several hours. I begged and pleaded, but no one listened. I cried, for hours, holding my baby who was deteriorating fast. But nothing useful was actually happening.

What were the nurses and doctors doing? They were not ignoring Freya, but they were just deadset on plan A, locating a vent. They called up the wards, they called up other hospitals. They worked hard, but stupidly neglecting all other options of making Freya’s condition at least more stable.

And once they found a vent the same attitude continued. When I told the best way to battle secretions was to keep them lose and suction a lot the consultant told me he thought I was exaggerating and Freya would be better off not being suctioned too much so that she could benefit from the support from the ventilator. The night nurse promised me she should suction as often as required but in the early hours Freya’s tracheostomy tube completely blocked because they did not suction her enough. A dangerous, life threatening event.

In the morning, after a few hours of exhausted sleep, I came to I found my baby crying, pale, not able to focus her eyes on anything. When I told the nurse that I knew Freya was was desaturating she told me it was a bad trace on monitor; she refused to increase the oxygen so I did; she refused to call the doctor so I shouted at her until she did; by which time a crash call had to be placed. In the end the numpties at Whittington agreed the situation was too grave for them and we got retrieved to St Mary’s PICU.

What happened over the next weeks will never leave me. Freya was ill, iller than ever before. She was completely sedated, paralysed and fully ventilated for days and days. We could not touch her as any little movement made het oxygen levels drop and her little heart to start giving up. She swoll up from all the fluids.The doctors shuffled around quietly,trying every trick in the book, telling us with grave expressions on their faces that they were running out of options. Freya’s pallatiave care consultant came from a different hospital, just in case this was to be the end.

We sat for days by her bedside, not knowing what to do. I just did colouring in and expressed breastmilk. When you have a sick baby it feels like the umbilical cord is never properly cut. But rather than your child being yanked by an imaginary cord back to you, it is you who gets yanked back to your child. Leaving them even in the best hands fills you with dread. Going downstairs for coffee seemed far. Lunch time outings had to be quick and within minutes from the hospital. You can’t stay 24 hours a day, but leaving is hard – only exhaustion helped me to get some sleep at a nearby hotel.

Days turned into weeks and things were not getting better. I just felt scared and tired and numb. And then something happened, there was a small improvement (parents of medical kids – it was the oscillator. I heart the oscillator).Freya started doing better. They started weaning her off all the drugs and she started coming around, slowly, like a very, very angry little drunkard. She had been on intervenious morphine for weeks, and now at the age of 7 months had to go through weeks of painful withdrawal.

So what could have been done different, better? I still believe that Whittington dropped the ball. With an early intervention, Freya may have bounced back quicker, perhaps even without PICU admission. Or she may have not. But the things I proposed would have not made her worse off, that is for sure. I would have not spend Christmas night bawling my eyes out. We would have not felt as a family ignored, our views discounted.

Cerebrocostomandibular syndrome is rare, and Freya tends to make her own rules. So I, as mama bear of a medically complex warrior, have made it my job to read, learn, research, question everything that comes my way when it comes to Freya and her medical condition. I know countless women and men who have made their mission to become the experts in their children.

So medical professionals and those involved in our children’s care – I urge you:  Listen to us, we know these little people the best! We know the normal kiddo stuff like how to calm them down, what is their favourite toy. But we know what has worked in the past, what vent settings have helped, what medications brought results. We know what respiratory rate is normal and we definately know how many times we need to suction their tracheostomy in a day. We may not be doctors, and I am not suggesting we should be in charge of what happens in a hospital, but we are a resource like no other when you meet a medically complex child.

And mums and dads new to it all – listen, learn, ask questions. Research, read, seek knowledge. Articulate and advocate. Share your experiences, brainstorm! Grow from set backs, emergencies. And follow your gut instinct. And if you do not  yet feel like an expert, you soon will.

P.s. This week I was saddened to see that someone had stolen the Christmas presents intended for kids at St Mary’s PICU, the very place that nursed Freya better after last Christmas. I was going to include a link to their fundraising page for new toys but it seems they have well exceeded their target. However, all money they collect goes to supporting children and families who need their services and I wholly support them. Here is a link to their website www.cosmiccharity.com.  Stealing from sick children is pretty much as low as you can go. I hope people’s charity following this incident will help COSMIC in their fundraising efforts. Silver linings and all that.

P.p.s Talking about going low, there has been some developments in my employment claim against my ex-employers, Ross & Co Solicitors (www.ross-solicitors.com). Instead of threatening to sue me they actually now have. It all started from them refusing to pay me my holidays as they claim they overpaid me back in 2014. Basically, it seems that they were too lazy to pay their employees what it said on the payslips each month, but just set a standing order for a set amount. Of course this meant they would inevitably pay everyone wrong pretty much all the time. In their minds it doesn’t matter that I told them repeatedly of the mistakes – they want their money back – even if the several the amounts they are seeking are as low as 20 pence from back in the beginning of 2014.

The funny thing about it is that they are now spending thousands after thousands trying to recover an amount that totals less than £1,500.Particularly as I did make them hundreds of thousands of pounds. And it will be pretty much impossible to recover any money from me as I have none – one of those side effects of having a sick kid and having to give up work.  Everyone is entitled to enforce their legal rights and spend their cash on whatever wild goose chase they want, but one thing is for sure – there is no intention from their part to be decent or fair here – these are bullying tactics, attempts to scare me off.

Keep tuned for more on the subject – I need to do some fundraising for legal fees (#spare20pence) and know many of my fellow parents in special needs community are going through difficulties with their employers so I hope by sharing my experiences I can help them too. Want to help?  Get in touch! Want to share your story? Share it with me. We can compare notes about how low can your ex-employer go!

 

 

About strength

About strength

“We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face…we must do that which we think we cannot” Eleanor Roosevelt

It was raining when we walked up Southampton Row. I glanced to my right and saw the work “Casino” in big blue letters. I thought of hitting the roulette table instead of late breakfast – after all between two of us we have three children with CCMS –  a syndrome so rare less than a hundred cases have been recorded in the world.  What is the odds of that? If the universe had dealt us the highest of odds could we not replicate these in a casino?

Yesterday I met two extraordinary people – Jessica, a little girl with CCMS and her mother, Brianne. Brianne shared her family’s extraordinary story over some coffee and breakfast, while Jessica played with little colourful giraffes in silence.  A beautiful, smart little girl, full of life, facing battles bigger than many of us ever will.  On my way home I started thinking about strength, and how Freya, and the people I have met through her, have redefined to me what being strong really means.

When your child gets diagnosed with a life-threatening illness it feels like your whole entire life collapses. At first it feels like everything slows down; I can still remember every excruciating step we took from the consultant’s office to the parents’ accommodation after we got told of Freya’s prognosis. I remember how the information slowly seeped into my mind over the following weeks, how fear and feeling of impending dread made a home in my heart. And I remember the anger I felt when I looked around and saw the life in London in middle of a beautiful summer; people living and laughing – how could they, when my life was crumbling around me? I felt totally and utterly alone, like no one could ever understand what was going on in my head.

A few weeks later my partner and I sat in a waiting room of her maxillofacial surgeon with our little princess on my lap, nervously checking the meter on the oxygen cylinder. A woman approached us with her teenage daughter and told us their story – the midnight ambulance rides to resus rooms, the consultants telling them devastating news over, and how their daughter beat all the odds. She shared funny stories about trying to get medical formula out of the country to take with them on holiday when all countries in Europe had such banned products from the UK during the mad cows’ disease outbreak. She told us stories of operations, hospitals, experts proven wrong. She looked at us and with a knowing smile told she still did not knew how any of them got through the first couple of years, but that they did. I have thought of this conversation so many times and cherish it – it gave me hope at a time when our lives were the hardest they have ever been.

And I started to realise that life continues, and not just around us, but for us as well. Yes, we were stuck at hospitals for weeks, months even. There were more instances of one step forward and twelve back that I care to remember. But slowly, slowly, our lives started finding the new normal.  Soon enough we met others; little people gravely ill and the families of these mini medical warriors. People who shared our path and touched our hearts, whether we sat with them by our children’s bedsides for hours, or connected through online groups or sites.  And that was when my real lessons in strength started.

We think strength comes with power, with money, with well-made connections men wearing smart suits make in their clubs. We mistake bullying as being strong, we erroneously consider unkindness and opportunism as signs of strength of character, when all it truly reflects the opposite. Trying to push over those you consider weak does not make you strong. It makes you a c*nt.

So what do I think is true strength? It is a child who laughs and plays even when they are in pain. It is the parents who push through, day in day out, to provide their kids the best chances to live, even when hope is scarce. It’s when we learn some pretty scary medical procedures that we need to administer just to take our kids home. It is when we live, laugh, love and enjoy our lives, even when the challenges we face seem unsurmountable. It is when we stand our ground and say NO to injustice and unkindness. It lives in sacrifices we make; the careers abandoned, friendships lost, the bank balances depleted. It is the decisions families take to provide the best fighting chance to their children and when they allow their precious children to go when the battle gets too hard and when peace must be found.

Not everything that doesn’t kill you makes you stronger. We carry the stress, the pain, the trauma with us, slowly shaping us into the new people altogether. It can make or break you.  And like Brianne said to me over breakfast, it is sink or swim. Except that when you are fighting for your child sinking is not an option.  She reminded me that you can float for a bit, catch your breath, but the only option afterwards is to swim. And that, I think, embodies strength.

So I choose to swim. Every single day of my life.

P.s. Brianne also blogs about their life with CCMS – have a look at http://motherof3specialchildren.blogspot.co.uk/

 

Food, glorious food

Food, glorious food

I love food. I have always loved food. I love cooking and in my past life when I was able to travel I was happy to explore the culinary world (Yes to silk worms and tree ants in Cambodia. No to a mongoose in Ivory Coast, partly because it was still alive, happily digging a hole and looking very, very cute). I come from a family that loves food and we use food to celebrate, to commiserate, to show love, to socialise.  

So when I was expecting Freya I was already thinking of making my own baby food, introducing her to variety of world cuisines and initiating her to be a member of our food loving clan. I wanted to fully breastfeed in the beginning, so I knew I was jumping the gun a little bit planning my baby’s diet in utero, but, as it happens I am one of those people who are already planning their next meal when they put down the fork. A kind of a rotund bumblebee happily buzzing from one meal of a flower to another.

So Freya came along and it became very clear that this one did not like opening her mouth and could not feed through her mouth. So on her very first day on this earth the medical team put a nasogastric (NG) tube down her nose to feed her. NG tubes are these flimsy little plastic tubes that they stick up your nostril, down your throat to your belly. The milk is then pumped into the stomach either with a little electronic pump or a syringe. They are fairly straightforward to replace and altogether minor things as far as medical stuff is concerned, but I cannot imagine them being particularly comfortable. Nor did Freya think so as she developed variety of cunning techniques to get hers out (8 in a day was her record). 

As we got to know Freya better it became clear feeding orally was not going to be in the cards for some time. Freya had what is called very severe micrognathia (tiny little jaw) and opening special her mouth is neither a natural or a comfortable movement for her. No one even really knows how well does she swallow – with the little jaw there is not much space inside her mouth with her tongue being pushed back. It seems that last winter she had some serious issues dealing with secretions and in absence of a fully functioning swallow the spit and snot trickled down to her little lungs, causing some pretty dramatic dashes to intensive care.

In April this year Freya had a gastrostomy – a tube fitted directly to her stomach. Although drilling a hole to your baby’s stomach does not sound like the nicest thing we welcomed this new tube, after months and months of battling to keep the NG tube in and risking feeding her in her lungs in case it got dislodged.

As with many of these medically complex kiddos weight gain has been always an issue with Freya. She has been frequently ill, with no or reduced feeds, she vomits a lot and uses more calories than a normal baby just to keep breathing.  I expressed breastmilk for her for 14 months but she still needed extra calories, so early on we had dietician input in trying to get our baby nice and fat.

The official line here in the UK is that when your enterally fed baby needs extra nutrition the healthcare professionals will prescribe you medical formula.  There are countless variations from dairy free to amino acid feeds. I admit, I did not like the idea of feeding my child artificial formula so I did my research and from early on was interested in introducing “blended diet” to Freya. Basically you get food, put it in a blender and then push it down the gastrostomy or the NG tube.

Why? My reasoning was that I cannot believe there is a magic liquid that fully provides all our nutritional needs (though a good red wine comes close. I am now talking from personal experience J). Why would all health professionals otherwise bang on about varied diet and eating your veggies to us mouth eaters? Secondly, with a little bit of research I could already discover some pretty scary things about medical formula. The one Freya was given was basically made out of water, maltodextrin, oil and artificial vitamins. For those who have not come across maltodextrin it is basically a dried form of corn syrup, a white sugar derivative.  It has a higher glycaemic index score (indicating specific food’s effect on a person’s blood sugar levels) than sugar, and like white sugar is devoid of all nutrients.  Heavy use has been reported to kill of the good bacteria in your gut, causing variety of digestive disorders. Yum yum love in my tum tum? Not quite. And professionals wanted my sick baby to only eat this? No thank you.

As soon as I started mentioning the words blended and diet I got the distinct feeling I was not going to be making friends amongst the Freya’s dieticians. It appears that the party line is medical formula and the whole question of feeding your child real food is very controversial when we are talking about enterally fed kids or kids with feeding problems. I had my share of “how about if the tube gets blocked” (I have a good blender thank you very much) to “are you sure you will be able meet Freya’s nutritional needs if she is not on medical formula?” (Errr, yes. Have you seen what is in the crap you are proposing that I feed my child?). But overall I think I got off lightly – I have heard of parents who have had their dieticians threatening to report them to social services and for their kids to be taken into care if they insist on feeding them real food instead of medical formula.    

So we have been blending since we got home in July. This is first week of completely off the formula.  I spend hours reading and researching, making bone broths and probiotic pickles. Freya is by far the one who eats the healthiest in our household. Has it made a difference? I think so. She seems more energetic. There is less vomiting. She has more hair. For the first time she indicates she is hungry by bum shuffling over with a syringe in one hand and her gastrostomy in other. Has it been a magic cure to all ailments? No. it is trial and error. It has been harder than I thought. But we are getting there.

Lessons learnt? What you are told by professionals is not always the ultimate and only truth out there and certainly not always best for your child.  Do your reading, but have a healthy dose of scepticism when you do. Dare to go with your gut (it might just benefit your child’s one!).  But do not put unrealistic expectations on yourself or your child.  It is hard enough to have a medically complex child without guilt tripping yourself over feeding them formula or any other reasonable alternative.

…And remember- if the tube gets blocked try flushing it back and forth with water. That has always worked with us.

Are you interested in the blended diet? I am not an expert, but feel free to get in touch. I am happy to share our experience!