First, a shout out to BethGo. Thanks for coming by! It means a lot to me to meet others out there who know what the stares are like. Who understand the heartbreak of knowing that your child will never be "normal" (I know, I know, she is "normal" but if you are questioning this statement you don't get it). Beth, I have been by your blog too and although haven't had as much time to read it as I'd like I did add it to my favorites so I can find it easily when I have more time. I scrolled around on it and found an entry where you talk about your oldest saying something about a child (I think on a cartoon) without a hand and he asks you what happened and you blow it off and say, dunno- born like that, or something. And then, of course, the irony set in. I can appreciate those moments.
I remember when I got pregnant Michael and I talked about what if our child/ren had Down Syndrome, or what if they had a cleft lip and palate, or what if they had autism. We thought of and discussed every possible scenario (or so we thought) and how we would handle it. When we found out we were having twins we knew there was a chance of cerebral palsy, hindered eye sight and other complications from premature births. We worked out situations. What if...
I think every parent does that. You wonder if your kid will be "normal" or, shall I say "typical". You think about what they will look like, what they will be like. You go through all the probable scenarios.... Downs, autism, club feet, cleft lip, heart problems. You never, ever think about what if your child is missing a bone or a part of their body. Seriously, this thought never crosses your mind. However, as I have said before, people are born missing limbs all the time. Isn't the statistic 500 children every year will be born with a limb difference?
Okay, so here's the deal. I appreciate you mothers who know what this is like. Thank you Lizzie, Mei Mei's mom, thanks again BethGo, thank you, Amy (Helen's mom) and all the others out there who are reading this.
A special thanks to Jenna and Logan. My Seattle friend that can understand what being this kind of mom is like. We can talk about prosthetist appointments, new legs, chafing, physical therapy to ride scooters, how "amazing" our kids are, and, most importantly.... the only other child that Madeleine knows who has a 'leggie', very special indeed. So, Jenna, I hope you don't mind but I am going to encourage all of my readers to check out your blog (click the link above or on the side) so that they can see Logan's fabulous new leg and revel in his awe inspiring scooter work. You trying riding a scooter with a knee that doesn't bend!!!!
6 comments:
Thanks Niki! Im so thankful for your friendship. you have been such a support through the last year
thank you
Thanks for the shout out. :)
We had Riley fitted for his first helper hand at 4 months. I know all about multiple fittings and chafing and all that jazz.
It is interesting for me reading your blog though because for us, one of the biggest things we've struggled with is whether Riley's helper hand is even necessary as he is able to do most everything without it. Now don't get me wrong, it does help him just not in the same way that a helper leg helps Madeleine.
What an interesting journey we are all on.
Beth, you are right about the helper limbs. I have heard other parents talk about how their child doesn't want the prosthetic hand, that it can be cumbersome and uncomfortable. I say, function over form- if he can get around without it why wear it unless for those special times when he needs it.
For Madeleine she really needs the helper leg, she can walk without it but not very efficiently.
I've been meaning to post a comment since your entry on "limb difference." First of all, I appreciate you taking the time to provide a "name/label." (Hate that word - label...) Even during my years at Equifriends, I've never known what to say - amputee didn't seem accurate, one-armed/legged/footed seemed crude, etc. Anyway - thank you - I need all the education I can get. But, another reason why I've been meaning to respond is that I've been thinking about the concept of staring and what it means to the children who are the recipients of the stares and their parents and the reasons why people stare. I was at the park recently and I found myself staring at a boy - probably age 6 or 7 - who clearly had some developmental challenges. I stared at him out of curiousity - not because I found his behavior and mannerisms disturbing or sad - but out of true curiousity. As you know, our son Finn has some developmental delays - it's impossible to tell right now how permanent they are or what they will mean for him later on. I was staring at the boy in the park because I was wondering if that's what Finn will be like. What will I do when people are staring at him? Should I respond, "defend" him? What should I say exactly? It's all a big mystery right now since we don't know what we're dealing with. Anyway, your entry triggered a number of thoughts for me - so thank you, as always, for your willingness to share and educate.
Anna,
I've been meaning to email you/call you and check in.
I didn't know what to call 'it' either. I think some people have a hard time with the label "amputee" but it doesn't bother me. (I will write another post on "people first" language.)
The staring is a hard one. Jenna and I were just talking about it. On one hand I know why people stare and I know that I am 'guilty' of it as well. I think that it is usually out of curiosity and not to be rude. I think for me, I'd rather people ask me about it in a very sensitive way. I think we have to get immune to the staring at some point. I guess I should ask more verbal people who have a limb difference what they think. I'll keep pondering this one.
I personally dont mind the occasional stare, but it gets to be rude when people stare so hard they walk into a wall, or miss their elevator.
I like people to ask nicely why he walks different, not what is wrong with him, as i see nothing wrong with him, just different.
I need to start smiling and looking away so i dont see the stares.
I think people are just curious, i have to remmeber when i was pregnant, i never had seen a child with a limb difference.
Thanks Niki, what a great post!:)
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