A few days ago, someone sent me a link to an amazing blog. It seems that the author is a photographer as well as a mother. She has beautiful photos on her pages, and I spent at least an hour browsing through her archives.
The reason that this particular blog was forwarded to me, however, was one entry in particular:
Nella Cordelia: A Birth Story
This post tells the story of a family whose second daughter was diagnosed with Down syndrome shortly after birth. It is a beautiful, poignant, and honest entry. And it got me to thinking.
I wondered about the experiences of families with chromosome 18 changes. When did people learn of the diagnosis? Before the baby was born? Or perhaps after a "diagnostic odyssey" involving lots of tests, referrals, and so forth? Were their experiences similar or different to the one described by this author? I wonder if it makes a difference that Down syndrome is relatively "common", when compared to the conditions we see in the Registry. Or are those feelings of shock and bewilderment universal?
I also wonder if there is anyone out there that would be willing to share a little about their experiences. I'm not talking about a novel (unless you feel like writing one!) I would just be interested to hear what people think about this woman's experience, and whether/how it is similar or different to their own.
If there is anyone that would like to let people know about their story, feel free to leave a comment here!
I read that blog as well. She's a very talented photographer and writer. I plan on sharing my experiences on my blog soon too. When I do, I'll be sure to pass on the link.
ReplyDeleteI'm happy to. My blog address is jennyandblair.blogspot.com. I have been writing for three years now (Deak, Ring 18 is almost four) There are several stories of our experiences with Deakon, although not always chronological.
ReplyDeleteHappy to make you aware of over 500 parents of children with Trisomy 18 who have generously shared their stories at http://www.trisomy18.org/site/TR
ReplyDeleteooh, my initial comment didn't save. It was to say I've read the blog, I think it's beauatiful. I'd be really happy to share my experiences of diagnosis and I have a blog that the early posts talk about and the theme recurs throughout.
ReplyDeletehttp://sarajinbetween.blogspot.com.
I'll try to write some more thinking back to that time as I think it is different when the condition you're facing is something that no-one has heard of.
Thank you so much for commenting, everyone! I have just spent a couple of hours looking at the various posts on these blogs, and I have really appreciated hearing about these experiences. It makes me think we should collect a list of the chromosome 18 parent blogs...Unless there is one out there already and I don't know about it? How great it would be for parents to be able to find a list of other families' blogs that are going through the same thing (or have gone through it in the past).
ReplyDeleteThank you all so much for sharing!! It does seem like it is a little different if the condition isn't as well-known as Down syndrome...
Sounds like a good project to work on together! We've got a very long list started at Trisomy 18 Foundation.
ReplyDeleteWe have a blog! www.kissesforkenzie.blogspot.com. Just started it a few weeks ago, so haven't gotten around to talking about the 18q- stuff yet, but it's coming soon!
ReplyDeleteI as well have finally posted Emarie's (18q-) story of birth on our blog in honor of Mother's Day. It's www.peters-fam.blogspot.com
ReplyDeleteHi All,
ReplyDeleteWe have a family blog, posting about our day to day lives. We have mentioned
Graham's special needs. However, to date, we had not yet mentioned his
diagnosis of 18q-. We've only known for 2 mos now. It was such a delicate
subject, one I wasn't even sure I'd share. Once we finally decided to share, it
took me a while to find the words. I hope I did a good job expressing what it
is like to receive a diagnosis such as this. If you're curious, here's the
link.
Enjoy!
http://wolfsonsafari.blogspot.com/
I'm not sure why, but I didn't get any emails that let me know that people had left comments here lately! I'm sorry for not responding earlier!
ReplyDeleteThanks, everyone, for sharing your thoughts. For the families that left their blog addresses--I've really enjoyed reading them!! I'm going to be contacting you directly to ask if I can link you from this website!