amputee baby!

[rhombus]

Hi. My 12 month old son is a bilateral lower leg amputee (due to severe congenital bone deficiency). He's only one month post-surgery so we haven't started the process of being fitted for prostheses yet, but soon!

I would sure like to connect with other natural parenting types who ALSO manage orthopedic disability. In addition to his leg amputations, my son has hand differences, as well.

I think there are so many people of a natural living mindset who naively assume that if you do everything "right", you will have a "perfect" baby. Of course, that's not how it works. I'm still a proponent of a healthy lifestyle and good nutrition, but now I realize that we are less in control than we think we are. No amount of raw kale is going to keep genes from mutating, you know?

So, other parents of babies with limb differences? Babies who learned to walk on prosthetic legs? Anyone?

[Linda on the move]

Originally Posted by rhombus 

I think there are so many people of a natural living mindset who naively assume that if you do everything "right", you will have a "perfect" baby. Of course, that's not how it works. I'm still a proponent of a healthy lifestyle and good nutrition, but now I realize that we are less in control than we think we are. No amount of raw kale is going to keep genes from mutating, you know?

Hello and welcome. My DD's issues are very different than your son's (she has autism) but this rang so true to me and I'm sure others here. Life just happens and we really don't have that much control.

I think the reason to practice APing and healthy living and all that is because it's the right thing to do, not because it offers a specific outcome. There isn't a magic recipe that if we get just right, then everything will be perfect.

For me, a big word was "ok."  People would ask if my DD was OK,  if she was doing OK, if her development was OK now. For awhile I felt like that answer was no, but then I got to a point where something in my head switched and felt like it was all OK, even though none of it was what I had expected. OK was a much bigger place that I had realized. She's OK, and I'm Ok with how she is.

There is a famous piece on the web that you might find helpful:

http://www.our-kids.org/Archives/Holland.html

[rhombus]

Hi, thanks for commenting.

I'm OK with how my son is, too. But I still benefit from talking to folks who "get it". Shoving emotions aside, there remains a lot of logistical challenges to having a son with limb differences.

I am familiar with the essay. I know it is a great comfort to many people, and I applaud the original writer for providing something that has been such a piece of inspiration for many. It's been a while, but about six months ago, I wrote a response to it, and why it doesn't quite work for me. http://bannerday.wordpress.com/2012/05/02/its-like-this/

[jenleereeves]

Hi there! My daughter was born with one hand. In amputee terms, she's a LAE: left above elbow. I've really found incredible comfort connecting to other adults and children in the limb different world. One of the most important things we've focused on is core strength: Pilates, swimming, dance and therapeutic horse riding. Our kids are more likely to deal with repetitive stress injuries so core strength helps prevent a lot of that. Let me know if I can help in any way. I run a website called Born Just Right. You can also find me on Facebook and Google+.

[rhombus]

Jen! you are like a social media ninja! this is april with baby Ulysses. :)

[jenleereeves]

Oh my gosh! That's awesome. You know, I hadn't asked before. But have you contacted the Amputee Coaltion. They try to help mentor amputees with other amputees. I know some kids get the chance to be mentors and it would be totally worth seeing if there's a family or person near you. And you know how to find me. I'm happy to keep brainstorming.

[xivmom]

My ten year old son was borning missing fingers and toes . He had part of a finger amputated this summer due to pain from a claw-like nail. I blog at: www.bakersdozenandapolloxiv.com.

I don't talk about it much on the blog because he is very sensitive about it