The TL:DR version is: I don't travel.
This is my daughter Celyn
Here she is in her wheelchair handing over cheques from sales of her book to the Children's Hospice I visit with her.
She's 5 days old in this one.
By my calculation I've been more than 10 miles from Celyn on 3 occasions in the past 11 years, all of those being swift trips to London which required enormous amounts of arranging.
Celyn has no use of her limbs, she's doubly incontinent, registered blind, she can't speak or eat or drink, she has epilepsy, she suffers from scoliosis, her hips are displaced and her wrists and one ankle turned in. She has no emotional filters, and she suffers multiple sources of pain. She wakes between 5 and 10 times a night and needs turning over, or changing, or settling, or all three.
She is also clever, interactive (once you learn her signals), enthusiastic about life, loves stories, and likes to laugh.
She spends a lot of time in hospital for various appointments.
My wife, who suffers her own significant health problems, can't lift her, or turn her. So all of that means I'm required to look after Celyn whenever she isn't in school. We have carers come to the house for respite care but I need to be around even then to help lift Celyn when she needs changing or wants to go for a walk (she loves walks).
So. I don't travel. I would very much like to attend fantasy conventions, go to events, have a holiday, even do book tours. But it's not possible. And this is why.
I'm not posting this to make anyone feel stupid for asking. "When are you coming to XXXX?" isn't a stupid question. I just wanted to have a post to link to in order to stop me having to paraphrase this every other day.
She's got beautiful hair :)
ReplyDeleteOh but the places you've taken people :)!
ReplyDeleteOh my heavens Celyn charms my heart every time I see a photo of her. She sold a book for you. Someone mentioned Prince of Thorns so I googled you and I read something that mentioned you had a daughter with special needs. I figured I'd buy your book 'cause even if I hated it, it'd still be supporting someone in the "League of Extraordinary Parenting" and LEPs gotta stick together. And the rest is history.
ReplyDeleteLeague of Extraordinary Parenting is such a beautiful depiction for those who've faced challenges. Made me cry upon reading it.
DeleteMark, you definitely win parent of the year 11 years running in my book. You have a beautiful daughter and are doing good by her. Keep it up and keep finding time to string words together that transport us into the world of your imagination.
ReplyDeleteShe's a great kid, and your an awesome dad for taking such good care of her. Kudos. Just a thought, but podcasts are a good venue for those who want to hear what you have to say. Have you tried those before?
ReplyDeleteThis is an excellent idea. I would love to hear Mark podcast, even if he only got one out every 1-3 months.
ReplyDeleteWhat a cutie!
ReplyDeleteWhat a cutie!
ReplyDeleteYou inspire me! I have raised my (now an adult) Downs Syndrome daughter by myself along with 4 other children. I wish I had known you while I was raising all of them, would have loved that inspiration you give just by your writing and being a Dad. Thank you for all you do! You are an amazing human being!
ReplyDeleteThank you for being an awesome parent. I hope you are able to find other ways to interact with the community, without taking time away from your daughter. If you are unable to though, it's quite clear that it's well worth the time you spend with your beautiful daughter.
ReplyDeletesoooo... when will the fantasy convention be at your place?
ReplyDeleteWith all those difficulties and still keeping your sense of humor must be an achievement in itself.
Nice work super dad.
I agree with Sergio. Next fantasycon at your place. Travel is soooo overrated in any case. And they should make a prize especially for dads like you. She's a treasure, BTW. My sister was born with a kidney problem from birth. She is on dialysis. Growing up with her was hard, with frequent visits to hospital--almost every other day. I know how that feels. But, I'm glad to have her, and she's the best sister I could ever wish for. We are all blessed to have her, as are you to have Celyn whom you adore so much and I understand why.
ReplyDeleteyou are a talented person with a kind heart
ReplyDelete