Skip to main content

Life of Ryan

Once upon a Saturday morning. 


10 November 2001, only hours after leaving my job on the Friday evening to start my maternity leave, I gave birth to my second son. For the previous nine months I had convinced myself that I was having a girl. I already had a wonderful son and a little girl would complete our small family perfectly. I didn't even have a boy's name picked, so when the midwife congratulated my disgustingly easily labour and invited me to say hello to my beautiful new son my first reaction was total shock and my first words were (yes I am almost embarrassed to say) "I didn't order a boy, I am having a girl, her name is Megan. Can you send him back?" Of course, this shock only lasted a matter of seconds for the moment the midwife placed him in my arms I was hooked to this utterly gorgeous bundle of tiny awesomeness.

 I cannot pinpoint the day or time exactly when I started to suspect that things were slightly amiss, but very early on in Ryan's life, I began to realise he was different somehow. Something was not quite right. I started to make notes in his red 'Personal Child Health Record' (PCHR) that is every new mum's Bible. Ryan's Development 'Firsts': Lifts head clear of ground - 16 weeks. Rolls over - 5 1/2 months. Sits with support - 5 1/2 months. Sits alone - 7 months. Crawled - 7 months. Stands to hold on - 8 1/2 months. Walks holding on - 9 1/2 months. Walking confidently - 13 months.

All seems spot on so far, I didn't present any worries at his 6-9 month check although the health visitor did comment he took a long time to get through the hearing test. At his 2 year review, I was worried! I commented in his PCHR "Very violent episodes - kicking and hitting, not during a tantrum. Totally unprovoked. He seemed also to have his own little language. I can understand him, just, but no-one else could, not even his dad. The advice I was given on this occasion was to not worry, he is probably just a late developer. 

 By his 3 and a half year check, I was really concerned. He was very clumsy, had several falls, cuts, hospital visits, was (and still is) a very sickly child, not potty trained and still not speaking. Wouldn't speak at all to the health visitor who again assured me he was just a late developer. His height and weight were consistently below average but I was told (yes, actually told) to stop being neurotic and attention-seeking.


Real Mothers Quote
I was called neurotic and attention seeking on many more occasions to come too. 

 This is our story of Ryan's journey of Autism and ultimately Cancer. Welcome to the ride of our lives. 

Comments

  1. Anon4 January 2018 at 01:24

    Reminds me of the amused Doctor who laughed when I took my 3(?) year old and said she is not talking. He said "Count your lucky stars" and he was right. We stopped 'understanding' her grunts and arm waving, and within days she went straight in to full sentences. He was right again - she still hasn't stopped talking!

    ReplyDelete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the
11 comments
Read more

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c
5 comments
Read more

3 Years in Remission

  3 Years in Remission In May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here . In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done to confirm he is once again in remission. This is, of course, outstanding news but we were muted in any celebrations as it was such early days and we had been here once before. Ryan has been having regular check-ups every 3 months and in May 2021 we were able to confirm he has reached the 9-month milestone which was phenomenal news. Massive Scare - Relapse #3, ALMOST. Tuesday 4 October 2022. Ryan mentioned to me about an Ulcer on the roof of his mouth. I took photos and monitored for a couple of weeks before we start to panic too much.😳 Thursday 27 October 2022. Sadly Ryan has had to have yet a
Post a Comment
Read more

Swansea Community Farm

Swansea Community Farm In April 2021 Ryan began volunteering at Swansea Community Farm (Welsh - Fferm Gymunedol Abertawe). For now, he attends one day a week on a Tuesday from 10 am to 4 pm but there is a possibility that he could also volunteer on Thursdays as well also 10 am to 4 pm. About the Farm Swansea Community Farm is the only city farm in Wales set in 3.5 acres of land with a variety of animals, an allotment, wildlife habitats, beehives and a café. The animals include donkeys, goats, sheep, ducks, geese and chickens. The farm aims to improve wellbeing, build skills and create a sense of community engagement by caring for the animals, producing local food and caring for the local environment. Duties Ryan has enjoyed a variety of different duties so far. He has walked the Donkeys, Sheep and Geese from their barns out to their fields and pond. Collected eggs from the Chickens, and has mucked out the donkey sheds. He has also cleaned out the chicken coops, cleaned and refilled all
Post a Comment
Read more

NK/T-cell Lymphoma

Lymphoma Diagnosis August 2016 we received the gut-wrenching news that haematology consultants at Children's Hospital of Wales, Cardiff believed Ryan aged 14 had a rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50. Up to this point Ryan had been ill for much of the preceding 2 years battling glandular fever that never improved and I battled with GPs to try and discover what was wrong.  Sometimes The Battle Chooses You There were still further tests that were needed, as the experts were baffled to see this cancer in a 14-year-old Western European Caucasian boy. We were given the confirmation diagnosis of EBV positive extra nodal NK/T-cell non-Hodgkin Lymphoma Stage 1, in September 2016. It is a bit of a mouthful literally as the lymphoma caused a soft tissue tumour to form in his throat. Steroid Chemotherapy commenced while planning began ready for 5 weeks of intense Radiotherapy before embarking on a six-month regime of SMI
6 comments
Read more