Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.
If you have questions about this, please email help@theknot.com.
Thank you.
Note: This only affects The Nest's community members and will not affect members on The Bump or The Knot.
The Baby Leo update
Well - I said I'd keep you all posted with what is happening with my cousin's son, Leo (10 months old). Unfortunately, nothing good. After several airlifts to Mayo from their small hometown hospital, they got all of his testing back. He has what is called Alpers Syndrome which is an extremely rare genetic mutation that causes his mitochondria not not be able to convert all the stuff it takes in into the energy his cells need to function. It is progressive, debilitating, and without a cure. They have no choice but to love him up until his body runs out of energy and shuts down his sight, brain development, muscles and organs.
Understandably, my cousin and his girlfriend/partner are completely shaken but the thing I think is the worst of this all is that they have to somehow explain the concept of death to their daughter who is only 4. All she wants to do is love and care for her brother and I can't imagine how one, when dealing with their own grief at the prospect of losing their child, helps their other child through the same process. It totally breaks my heart.
*sigh* What a downer of a post - so sorry - just neede to get it out there.
Re: The Baby Leo update
Wow, that is devastating...
I'll send lots of T's and P's for you and your family, and little Leo.
Edit: (On a side note, this sounds a lot like what Charles Wallace had in A Wind in the Door by Madeleine L'Engle, except he was older and it all was fictionalized.)
Knitting Blog
Updated 3-12
My Blog!
MY BLOG!
I am so sorry to hear about your family's sad news!!! We have a family friend who's son has the same disease...he is 7 now and they thought he would only make it until 2-3 years old. Your family is in my T&Ps during this time.
This is so incredibly sad. T&P to you and your family. I can't even begin to imagine the pain everyone is feeling, I'm tearing up over here and I don't even know Leo!
Are their grief counselors or anyone Leo's big sister can talk to? She isn't old enough to be in school yet, right? But having someone she can say anything to (I can only imagine she wouldn't want to upset her parents any more than they already are, kids are very aware of things like that, even at her age) might help her work through some of the emotions she'll be feeling throughout this.
Please let us know if there is anything we can do to help them/you out during this. I can't make a dish and drop it off in the traditional, neighborly sense but I'd love to contribute to a gift card to a nearly restaurant or delivery place.
pinterest
Thanks all - I'm doing OK aside from thinking about how I've never gone to a funeral of a child as an adult. I can honestly say that I had never considered that scenario before and it is really a downer. I just hope that he has the best life he can have and that my cousins can make the right choices for him, even when it is hard to do. If I am this sad, I can not even fathom how my cousin and his SO are holding it together. So tough.
Juangela - I honestly don't know if there is anything that delivers in their town - its pretty small. They've used caringbridge a ton though so if you wanted to do something (which is awesomely sweet of you and please don't feel like you have to!) maybe a tribute there?? I've known lots of folks with terminal illnesses or chronically ill children who have found it to be an amazing lifeline for support and encouragement and a sounding board for their pain and frustrations. It is entirely non-profit and a wonderful resource. Just a thought.