SHARED BY SARAH SKILTON
FROM WildDunk Camping
Hi I am Sarah, a 40-something year old mom to two amazing boys: ages 18 and 15. My husband and I have been together for over 20 years. We have 3 pawsome dogs: Loki (a German Shepherd), Neo (Beagle) and Mojo (a Jack Russell). In 2005, we moved from Birmingham, England to rural South Wales and have never looked back—but life hasn’t been an easy climb for us.
I have been writing since 2014, when I started a blog with my youngest son, who is autistic, at BellybuttonPanda. We wanted to share our story of the difficulties he has faced in his short life, and the battles we have fought to get the right support for him.
CONGRATULATIONS - IT'S A BOY?
In 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 I was having a girl. I already had a wonderful son, Owen, 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 pin-point 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 realize he was different somehow. Something was not quite right. I started to make notes in his red 'Personal Child Health Record'—a paper-based health record used by every new mom in the UK—but the advice I was given on every occasion from the health visitors was, “Don’t worry, he is probably just a late developer.”
By his age 3 ½ check-up, I was really concerned. He was very clumsy, had several falls, cuts, and hospital visits. He was (and still is) a very sickly child, not potty trained, and still not speaking. He 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. By age ten, he developed shingles. This puzzled the doctors, due to his young age, but they blamed it on the stress of promoting to secondary school. At age 12, he was diagnosed with mono, which was the beginning of the nightmare yet to come. He was seriously ill for over 2 years as I battled with the doctors, because I thought there was something more serious going on than just glandular fever. I got called neurotic again.
AN UNBELIEVABLE DIAGNOSIS
In August of 2016, when my son was 14, we received the gut-wrenching news that hematology consultants at Children's Hospital of Wales, Cardiff believed Ryan had a very rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50.
There were still further tests needed, as a few of 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 NK/T-cell non-Hodgkin Lymphoma in September 2016. It is a bit of a mouthful—literally—as the lymphoma had caused a soft tissue tumour to form in his throat. We have since discovered that Ryan is the only child in the UK to ever have been diagnosed with this type of cancer, and the chemotherapy protocol had to come over from Japan.
Unfortunately, because Ryan’s lymphoma had gone undiagnosed for so long, he was critically ill. In fact, he was too unwell and malnourished to actually begin treatment. The doctors were quite open and honest with me that they did not think he would survive to see his 15th birthday, but I give all credit to the vast medical team at Cardiff Children’s Hospital and Ryan’s stubborn autistic temperament. He defied all the odds, and has made a remarkable recovery. He is in remission and has 12 months of follow up still ahead.
CONTIUING TO COPE
Part of my therapy to help me through this harrowing time was to continue to write our BellybuttonPanda blog, now to share our cancer journey alongside the autism. It has proven a great comfort, and we have received amazing feedback from the Head and Neck Cancer Charity in Liverpool.
My other biggest stress reliever has always been walking and hiking. We are a very outdoorsy family. My husband Duncan is ex-army, and his main hobby is still backpacking—called “wild camping” in the UK. Our eldest son, Owen, loves kayaking and trekking with his dad. We all love dog-walking. As a family, we decided to use this love for the outdoors to help us cope after what was, without a doubt, the toughest year of our lives.
I have taken a voluntary lay-off from work to care for Ryan, as he has not attended school in over a year and has a home tutor three times a week. We have taken this opportunity for a new start to announce a positive change in our lives. A new direction for us, a future for us all to look forward to. We are proud to introduce to you our new, exciting business venture launching officially on September 4, 2017.
Welcome to WildDunk Camping. Reconnecting you with nature safely and respectfully. We offer wild camping training, overnight wild camp experiences, accessories and equipment. Everything you need to start your own wild camping adventure.
We officially launch on September 4, 2017, but our website is live though. You can read about our adventures on our blog. Check out our branded merchandise in our online shop and browse our training workshops & wild camp booking dates at WildDunkCamping.co.uk
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