Just The One Journal

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