In this third blog I will write about some of the challenges I can expect to face in Alaska. I will also touch on some of the issues of raising a child with PWS.
I’ve done enough in the hills and mountains – and spent time in the outdoors generally – to know that our expedition will be hard in many ways. At times it’s going to be uncomfortable, whether that means in the canoe or around camp. People tend to associate Alaska with cold temperatures, which is certainly true in winter, but in summer it can be surprisingly hot. The interior is hotter than Scotland and It’s not uncommon for temperatures to reach 30 degrees. There is a risk of grizzly bears in Alaska which must be taken seriously, and this means good camp discipline including storing food and toiletries correctly. However, on a day to day basis the bigger wildlife risk and nuisance will come from mosquitos. Thankfully they don’t carry disease in Alaska, but they are annoying and for me personally, their bites itch more than midge ones. Furthermore and unlike midges (but like cleggs for those that know!), mosquitos can unfortunately bite through thin t shirts meaning we will often have to wear head nets and water proof clothing in the sun! None of the above is to detract from what will be a unique experience and one that I’m very privileged to have the opportunity to take. But it’s a reflection of the realities I expect to encounter but I also hope to have many amazing moments on the trip to come too.
Raising a child with a complex health condition/disability is similar too; it is hard but interlaced with amazing moments. There are many aspects which are hard and harder next to those of raising a ‘typical’ child. Whilst Robyn does well in so many ways, certain things take longer because of her low muscle tone. For example, her spinal brace (which she wears for most of the day) adds a bit of complexity around toileting because it fastens at the back. There is a general need for patience too; autistic type traits inherent in PWS mean Robyn can get ‘stuck’ on something too which can result in her being a little repetitive. Many people with PWS are prone to emotional outbursts and tantrums which can be extremely challenging for parents and care givers. Thankfully this isn’t something which is too pronounced with Robyn…yet…but it may well be an issue in the future. None the less, additional needs means additional work for parents. However, it also needs to be balanced by the amazing things Robyn does which are testament to Robyn but also my wife, our family and so many allied health professionals and the research on the condition which has given us the knowledge we have.
You can support vital research into PWS by donating to this page (no monies raised will be used for our expedition) https://www.justgiving.com/page/david-jack-1682928138130?utm_source=copyLink&utm_medium=one_page&utm_content=page/david-jack-1682928138130&utm_campaign=pfp-share&utm_term=2aea4188bf524a2683f69b9faade4d46
Below is a photo of David (on the right) and his Father Rae (on the left)
