Just The One Journal

How are you coping with isolation? How are you coping with the threat of illness? How are you coping as a single-parent. My son is 'very high risk' due to Cystic Fibrosis and I have found it challenging to narrow down what this means to us while also nervous to write honestly about this time. Initially I was in blind panic mode. Nobody seemed to be taking this seriously, some children were taken out of school, others weren't, stockpiling was happening, antibac wipes/gel/spray prices skyrocketed, marathons were going ahead while others were closed down. I decided early on to take my son out of school a week before they closed. His condition means his lungs would be seriously affected by any respiratory infection, but the advice from the NHS was to bring him into clinic and continue life as usual. Instead, I kept us at home. I had to work from home. I worked from 5am-7am while he had breakfast and played, we spent the day inside with a trip out for exercise and to get fo...

And just as I was feeling better, getting rest, enjoying abit of routine..the hospital call to say Henry has grown a virus in his lungs and has to be on antibiotics for 2 weeks. 2 weeks you may question...not such a big deal ... But it is. It means having to physically hold down Henry while trying to get the syringe in his mouth. It means that in the morning I have to now do his breakfast, give him 3 vitamins from 3 different syringes, get him dressed, brush his teeth, help him go to the toilet a few times, get his nebuliser ready, keep him still to do his nebuliser, clean his nebuliser immediately, then fit in him screaming and being physical to me while I hold him down for antibiotics.....and then get him to nursery for 8am. And some parents struggle just getting their child dressed every morning....! Enjoy that every morning for 2 weeks. Morning and Afternoon. And with another nebuliser in the evening and pep masks and other physio. Where is the time for him and me to actually...

Very exciting moment for me, my writing piece for the wonderful single parent's charity Gingerbread, was published on their blog as part of National Storytelling Week. I am so proud of raising Henry alone as a single parent since he was 10 months old. We have had many highs and lows and I never forget what is important, his health and our happiness. Find the copy below and i'd love to know any comments or thoughts: Emily is a single mother to a nearly three-year-old son, Henry, who has cystic fibrosis. In 2017, they moved from London to Cornwall. Here, she writes about how freeing it has been for her to become a single parent. Becoming a single parent almost two years ago has been a defining moment in my life. This time of year can be very hard for me. It’s when I realised that life in our new flat was no different, the same empty words and behaviours unchanged, and that I was as alone as ever.  I lay in bed frequently in tears from confusion, isolation and pur...

I didn't expect all this emotion. Selling all of Henry's baby things, crib, high chairs, buggy, sleepyhead pod....all these things I had bought with excitement, good memories being made, partners exicted for our new arrival, the hope that we would have lots more children and it all feels desperately sad now. How things have turned so bad in 2 and a half years, the unimagineable hardships I have had to face, the huge life changes, not only divorce but emotional abuse, violence, and my son being diagnosed with a life-limiting illness requiring much support and receiving none. I can't wait to have all this stuff gone. To make peace with the past and move on without the reminders. This comes at a time I also asked henry's father for extra help emotionally and financially, and to have it refused. It is incredibly sad to see someone who you once loved making the same mistakes over and over and to continue to treat me and Henry as non existant. Money ruins people.  But ho...

On Tuesday I travelled to Birmingham for the first time for the Cystic Fibrosis Conference. Run by the CF Trust, I attended the second day aimed at family and friends to learn more about CF and meet some people. (They did a live stream on Facebook if anyone wants to catch up) It was a really interesting morning and a mix of families, doctors, physios attended. Doctors talked about a wide variety of drugs on the market that are in the pipeline for 508D and other CF genotypes. The Doctors all sounded really positive about the research being done even if it does seem slow and there are set backs. You can ask your hospital for remote access instead of/ as well as Clinics. This appealed to me as I live over an hour away from hospital so being able to have an oxygen monitor and other technology might be beneficial. It would also be great to monitor Henry's levels in relation to pollution or pollen levels and see how badly his lungs are affected. But they did stress the imp...

Friday 25th May 2018 The first day with no antibiotic for Henry. Since he was diagnosed with CF at 4 weeks old he has had a range of different antibiotics from 2.5ml once a day to 5ml x3 times a day. It is a real battle everyday to give it to him as well as doing all his physio, vitamins, creon enzymes etc etc.. not to mention suddenly having to learn how to mix up medicines with sterile water, remembering how much to give and when, how long each bottle of medicine lasts ( i have a diary so i can remember everything), and upsetting him almost every time I try to give it. I have been pushing for a year and a half to trial taking him off daily antibiotic and to give it only when he is symptomatic. I have had doctors and nurses talk down to me and dismiss my discussions. It was only in passing over a year ago that a nurse mentioned that babies newly diagnosed at the Brompton were being trialed with no daily antibiotic. And I have always found it confusing that doctors have given me ...

Sunday was my second ever Mother's Day.  I didn't sleep well the night before. It brings up memories of the past 2 years and it is upsetting to think about. One year ago my first ever mother's day was a disaster. It ended up with me arguing with my husband, ripping every mother's day card I'd been sent in fury and frustration and just crying and crying from being so exhausted doing everything myself and never being given the opportunity to rest ever. 40 weeks 3 months old 10 months old 22 months old I think what has been hardest is realising that what you expect from yourself becoming a mother rarely turns out to be the way you wanted it. Yes, there are lots of mothers who really do have wonderful home births and breastfeed, and travel with their children happily and feed them vegan meals and only wear organic cotton and amber beads for teething and use sustainable wooden spoons and natural rubber dummys..etc...etc...and you might really...

Yesterday I had my last councilling session. I started this in late summer last year when I was feeling surrounded by an endless tirade of exhausting circumstances both physically and emotionally. Henry was still not sleeping through the night and waking very early, I was negotiating a divorce while trying to emotionally distance myself from my husband and come to terms with what he had done to my idea of family life; I was exhausted from buying and renovating my house, still living under my parents roof and feeling little freedom to carve out my own space for me and my son. It was really my lowest point and every day felt utterly hope-less. Dealing with depression is awful but looking after a baby while going through it is intolerable. I was in contact with Outlook SW, a local councilling service and they begin by asking you a series of questions over the phone, my answers were sad and high in their register of someone who needs help. But my most enlightening question that I had be...

It has now been 2 weeks of Henry being ill, lethargic and abit miserable. First it was a cough (not good for CF) and the second has been a tummy bug resulting in massive stinky nappies and a snotty nose. Unable to put him in nursery we have been at home alot, with him refusing food, me struggling with his new behaviour, being stuck inside from the cold and rain, and me being unsure how much creon to be giving when he is eating random amounts. I find parenting such a challenge and so unenjoyable alot of the time. I always wanted to have a large family but now I never want any more as it just feels so relentless and demoralising alot of the time. This week I have put on alot of extra commitments on myself, job prospects, working out how to do the job I want to do while juggling all the responsibilites of Henry and his CF duties, and trying to take care of myself and enjoying my time with him- welcome to Parenthood! This has caused me to feel very overwhelmed, irritatable and my eczem...

2 days overdue publishing this post but last week was abit of a mess, Henry was ill, I was ill and we had a snivvly time cuddling up at home.. roll on next week to be the end of drizzly January and bring some nicer weather..so here is my post about our clinic the week before: Last monday was Henry's first CF Clinic of 2018. For the first year of his life we used to have to go to clinic every 2-3 weeks at the Brompton (and that's not including when he might get ill in between clinic's and i'd have to take him in for more cough swabs and checks) and now its every 2 months! That first year was awful, no rush of new baby excitement, it felt like it was all about henry's CF and that it would be like this forever...but it does get better, and my hope for any parents who have had a baby with a CF diagnosis recently is for them to read this and feel abit more positive, that the first year is particularly difficullt, even just having a baby for the first time, it might ...

I am again feeling overwhelmed. The week has gone well but it is a reminder of how quickly things can feel unbearable and unmanageable. Monday was Henry's CF Clinic which went really well (another blog post up tomorrow about it), I met the head Dr who was really informative and I came away feeling very positive about Henry's future and his health at the moment and that I am managing his physio and CF well.          I had two days in my hometown of Windsor which was an amazing break but sparked off my thoughts on wether I have made the right decisions in life recently. It reminded me how much I enjoy being in a town despite my lifelong feelings of being drawn to live near the sea. I enjoy a town where there are lots of activies and classes for me and Henry, larger facilities, restaurants, jobs that pay well and regular transport via buses and trains but also want the fresh air and sea. I feel very stretched between what I would prefer (Windsor) and the m...

We are off to CF Clinic in Exeter tomorrow and I don't want to go. I have recently been feeling much confusion and frustration towards the nurses/doctors/physios/psychologists in the NHS and CF has been weighing heavily on my mind all week. Henry's nails have been starting to break midway up his nail. I thought it was an accident, him pulling on toys too hard or something falling on his hands but the nursery commented on it being unusual and was it related to CF? I couldn't answer. I hadn't even thought it may be a CF issue and no-one from the hospitals has told me anything relating to this. A quick google and suprise suprise it is indeed a issue that CF people can have as they may have thinner nails and also they may get clubbing in their fingers as they get older. Not good news and upsetting. When I am having a good week and things seem to be going well, CF seems to knock me back and remind me of what a shock it is for my only child to have it. It reminds me of his ...

 " I believe one of the most valuable gifts you can give yourself is Time. Time to be fully present" Recently my days have been overshadowed by difficult contact with Henry's father (my soon to-be ex-husband) and thoughts of the unwelcome scenarios he may throw my way. It is hard to maintain detachment and politeness when being deeply hurt and upset is the feeling that keep hitting me when such little thought is given to the position he has put myself and his son in. But trying to combat these thoughts, for the first week of January I put some positive actions into place // 1.  I attended a 2 hour Yoga Workshop on Reflection and Intention. I had been recommeded going back to yoga by a local Reiki therapist who was wonderful in helping me relax and recommend life changes to help combat stress and to start with yoga (which i LOVE and have been doing for years but just hadn't found the time or the good teachers in cornwall. 2.  I enrolled Henry on 3 mornings a...

This time last year I was looking forward for January and waiting to move into our larger, brand new flat, space for the baby, clean and exciting. An old lady had lived there since the 60s and raised her family there, the renovations were made exactly for us. I had pushed for things to be new and clean due to Henry's CF so we got a new kitchen, new bathroom, new carpet, double glazing, dishwasher, fridge, washing machine, fresh paint etc etc. I was living in a smaller flat in central london with my husband and our 7month old baby, I had brought the baby home to this tiny flat from the hospital, gave him his first bath here, started weaning here but it was small and I had to carry the heavy buggy up and down stairs twice a day just to get out of the house. 2017 looked to be better. But I was alone. I decided to spend last New Year's at my friends which was fun, had made me feel more grateful for my husband and to be with someone but I couldn't shake the feeling that he just ...

Today I went to a baby music class with Henry. Long story short I have been going through alot and this class is a real enjoyment for me, helps bonding time and Henry absolutely loves it and learns so much. So recently he has been coughing, we've had hospital visits and lots of changes of antibiotics but slowly it has cleared to just a mucus noise when he breathes sometimes. I don't even notice it anymore but in class today it was glaringly obvious and very loud. All the mums started looking around and every time I looked up they were staring at me with concerned faces. One mum even moved her child away from Henry when he went to touch her. I totally get it. I too would think that this noise meant a child was ill and I wouldn't want my baby catching anything but it honestly made me feel so upset. I try so hard to make things fun when often everyday physio and antibiotics and coughing is just a reminder of how crap CF is and wondering what Henry's future will be like. ...

Its been in my mind alot..'I wish my child didn't have a genetic disease' but today I read that babies made from 2 women and 1 man as an advanced form of IVF has been approved  in the UK  so "t he historic and controversial move is to prevent children being born with deadly genetic diseases" . I have grappled with the fact that medicine at the moment is not advanced enough to cure cystic fibrosis and have questioned that if there was a procedure to remove faulty DNA cells in a foetus, if I would have had it done had I known my baby would have Cystic Fibrosis. I guess its partly jealously that another mother might have a genetically fine child by being offered a choice which I never had, but its also the price that being picky comes with, morally and financially for the NHS.  And this news comes as the drug Orkambi  is being fought in Parliament for the price to be lowered so it could be available to all CF patients who may benefit from it. At £100k per year, its...

8.15pm I feel incredibly angry. I got a call from Henry's nurse this afternoon that his cough swab from last Friday revealed he had grown Enterobacter and needs to now go onto Ciprofloxacin. I was told that they had faxed it to my GP and I could collect and give it to him starting tomorrow and for 4 weeks, although the nurse then said that's unusual as its normally 2 so I really have no idea how long for. She mentioned that he needs to be away from sunshine or wear factor 50 as ciprofloxacin can make skin photosensitive. Now i'm really angry as he had previously been given this 3 months ago and I was never told this information. Also she said that this infection is related to the gut and its possible that he doesn't have a lung infection and that he may have acid reflux which went on the cough swab but just to be sure you better give him the antibiotics. The fact that they don't know for certain or haven't asked us in for another cough swab to determine jus...

On Monday we took our 12 week old son to the Royal Brompton hospital for his bronchoscopy and pH test and were a very apprehensive. The doctor's had briefly mentioned it in past clinics but no-one had talked to us about it in detail. Even after receiving the letter confirming the date the staff still didn't elaborate on when he could be fed afterwards or tips to help in hospital and for parents it is a very anxious and worrying time taking your tiny baby into hospital. Once again the feeling that we are being not told certain information so as not to scare us , leaves us feeling more alone and more worried. I searched the Internet for any more information on how to deal with a baby going in for a bronchoscopy but found nothing except medical terms which was very frustrating so I wanted to detail what exactly happened and how to prepare: 7am feed 8am fasting only a small amount of water  10am came into hospital. There was a bed shortage so we were taken to the pl...

"I've got creon,  creon in my nose, creon in my toes,  creon in my hair,  creon everywhere" Learning your baby's natural routine or trying to implement your own is difficult, i'd planned to just listen to my baby and follow his lead...but you can't do that when it comes to medicines. From L-R: Bib, Creon in pot, Syringes with Flucloxacillin  Having a newborn with Cystic Fibrosis is hard. Antibiotics must be taken on an empty stomach so 2 hours after a feed or 1 hour before. Physio needs to be done morning and evening, but a crying baby wants food not physio. It is especially distressing to give Henry his Flucloxacillin antibiotics as he cries so much and pushes it out of his mouth. We called the nurses who advised to blow on his face fast which makes him swallow (a baby's natural reflex) and squeeze his cheeks. Yesterday was a triumph as he took all of the antibiotics and none dribbled out thanks to me holding his cheeks so his tongue ...

Henry actually slept between all his feeds until 3pm YES!! So spent the morning watching OITNB and then went for a walk over the bridge to Battersea Park. A beautiful sunny day in London, managed to pack his feed and nappies just incase and off we went for a lovely walk (even though lazily I am wearing my maternity pyjama top and just about bothered to take my trackies off and squeezed my post-natal wobbly body into my old dungaree dress...) Sailing boats on the Thames Still wearing my pyjama top...