How do I teach others that she is a "normal" kid? That she should be treated the same as everyone else? That she loves all the same things that the other kids like? That she wants to play too?
Then it hit me...
She is NOT like everyone else.
If I fail to recognize and accept her differences...if I fail to recognize and embrace her many strengths, I am failing her.
She is different.
Just like everyone else.
25 comments:
Eden is different, but that's okay. She is a beautiful girl inside and out...that is what's really important.
Billie,
You said it beautifully! How lucky Eden is to have a mom who thinks through stuff like this and how lucky are the rest of us to be given a chance to read gems like this!
I have no doubt that she will get through the difficult moments and shine through it all.
Well said my dear friend, well said. Lots of love to all of you. Jess
Eden is different, but she'll accept that. I promise. It took Bekah a while to realaize that this is the way she is going to be, but she later accepted it and is now very happy. I'm sure Edie will be the same :) hugs and support to you.
Eden is a beautiful little girl. She has wonderful parents and having a twin will always give her a special bond with Holland. From what I have seen she should grow up confident and secure. The difficulties she will face will come from other children/people who are ignorant or cold hearted. I hope that that these people are few and far between for Eden!
Perfectly stated.
Amy
But you know what? what makes her different makes her unique!! And makes her lovable in other ways...after reading your blog and seeing your videos, I KNOW you guys love her just as much as you love Holland...Eden has NEVER felt unloved by you guys, you guys are wonderful parents who also have wonderful parents.
Beautifully stated Billie. Please don't condemn me for what i'm about to say. Another blogger said it. Its the ignorant people who will treat her differently. Not because they're cold hearted, but because they're ignorant. Before I came across your blog, I knew nothing about CP. I thought it was a mental disease. If I had faced you on the street, I too would have gravitated to Holland, and avoided Eden. Only because I wouldn't have known that Eden could interact with me the same way Holland could. I would have avoided Eden..out of fear? because I would have felt sorry for her? because I thought that she wouldn't be able to understand me? I can't say for sure. I think the solution to your concerns is this. We need to educate people about CP, and the host of many other conditions out there. People need to know that children (and adults) like Eden are capable of doing most of what everyone else is..if not physically then most certainly mentally. I'm ashamed to admit that I was one of those people. After coming across your blog, and others like it, I'm proud to say that I'm no longer the same person.
I don't consider myself cold hearted at all Billie, in fact the opposite. I just didn't know so much, thus I didn't know how to act. I have two little girls of my own. When the older one was around two, she had some sort of sty on her left eye. It had gotten quite large, where other kids (and mothers) would either avoid her, or question me as to 'what was wrong with her'. I've felt a tiny bit of what you must endure on a daily basis. I have gotten a little tiny taste of your pain. I don't know how we as a society can work together to change our views, I firmly believe education is the key. I just don't know how you'd incorporate it on a massive scale.
Anyway, I think your family is beautiful, inside and out. Once people see that, treating Eden differently won't be an issue for you anymore. I hope my post didn't offend you or anyone else. And...on a lighter note....my five year old is 32 pounds...so don't stress too much about the girls' weights.
Eden is lucky to have a mom who can see Eden, not the disability, and not the child she wishes Eden was. It's OK to wish the CP wasn't there, obviously, but you still see Eden.
When I was in college at MIT I had a friend named Scott. We were in a service organization together. He was a grad student, and he was brilliant, and I mean brilliant by MIT standards, not by regular standards. He also had CP, worse that Eden's. He was in a motorized chair, and had to sign his name by putting the pen in his mouth to write. This guy who had every reason in the world to feel sorry for himself was spending a good deal of his spare time helping others. Eden may never play soccer, but she just might make the world a better place.
your little girls have touched more than anyone else in this world.. When my twins were in the nicu and having lots of problems, i came across your blog.. I havn t stopped reading it, and that was 15 months ago.. Eden may be different, but she is wonderful! Your teaching her to be an amazing little girl, so keep on doing what you are doing and I think both of your girls wiil grow up to be very special people! Happy new year..
Thanks Billie for this astute observation. I too think about how I will cultivate my daughter Hannah's self-esteem and confidence while at the same time, honor and acknowledge that there are things that are different about her, things that are harder for her than most other kids.
I wish the world were a different place; one where the differences kids with CP have were as accepted as differences in eye color or height. But ultimately, as are our beautiful kids grow and their individual personalities and affinities fully emerge, we (and they) will see that although they have struggles and challenges that are different from other people, they have strengths and gifts as well.
I have always explained it to Dear Son in terms of needing assistance-meaning everyone needs assistance with some things, some people need help more than others. I am sure he can see the differences but I have found it was more important to talk about things with him, meaning saying what I thought he was thinking (since he can't speak) and then he'd smile. For example, if he'd see a boy running (Dear Son loves the active boys), I might say something like, "I bet you'd like to run with him." He'd smile and it would make his day. His smile was always his way of letting me know I hit the nail on the head. Sometimes, he'd lean his head forward and lick my hand (a lick is a kiss) when I said that so I knew I was saying what he had been thinking. Just acknowledging it was good and helped us connect with each other. I might add to that, "I wish you could run too." I'd always let him know that I loved him either way but I didn't feel the need to say that immediately after that.
For me, and this is just me, I never liked taking a picture of him in his wheelchair because I felt like whenever I looked at a picture of a child in a wheelchair, I saw their disability first and not their abilities. Of course, this was easier when he was small and now it's much harder since I can't move him as easy. It's also different now than it was then, I mean, there wasn't any internet when Dear Son was born and people didn't have the exposure they do today to children/adults with disabiities.
As for Eden, I have no doubt that her disability will never define her. She has two great parents who love her and helping our children feel good about who they are will do more for their self esteem than anything else.
Embracing differences makes a difference on children's self-esteems. Growing up, my parents always made it clear that I was deaf which meant that I was different from others but it did not mean that I was better than other people or that other people were better than me. They never tried to hide my deafness or tell me that I am "normal." I'm really grateful that my parents accepted and embraced my deafness which instilled Deaf pride in me. They also always praised my talents and encouraged me to always do my best. I'm glad that you are doing the same for your girls. =)
In 1965 I spent a semester helping at Rackham School in Ypsilanti. I don't know if the school is still there, but it was for children with disabilities. I learned so much from them and the teacher who worked there. These kids knew they were different, but because of the positive people around them, they accepted who they were. They knew others didn't understand. I was afraid to help one little girl because I didn't want to hurt her. She had artificial arms and legs. She taught me how to lift her from the wheel chair into her class chair. Until we're around anyone with a disability, we don't understand how they feel. So many of us just don't know how to respond. All any of us can do is teach our children that they're important. Let them learn confidence and help them to understand that sometimes others are fearful of the unknown. There will always be people who are hateful. They're the ones who should be pitied. C.W.
I've always been partial to the 'everyone has disabilities and some are just more obvious than others' line, because I think it's really true.
The struggles are different, but at the end of the day I'd rather have a lack of mobility than be a narcissistic asshole.
Hun, a friend of mine doesn't like to describe her child as having special needs. When she talks about him, she talks about the diversity that is life. We should celebrate everyone's diversity.
J
perfectly put! our situation is different, just going on looks, my twins seem very similar. One has little to no health problems. The other is missing a portion of his lung, has a club foot that will need bracing for 4 years, etc. I was so taken aback this weekend when some of my parents friends asked each other if they thought the "sick" one would resent the "healthy" one in the future. I was standing right there and I think they thought I wasn't paying attention. I felt like a coward that I did not say anything. You are such an inspiration! Thank you for being so honest and open on your blog. I feel that we can all learn alot from you.
perfectly stated.
Oh Billie, I think about that all the time...how do I teach Grace to embrace her differences because we all have them. You seem to read my heart.
My Dear Billie,
I am just one of those lucky readers who read your blog to get inspiration and optimism. You bring tears to my eyes when you speak. Your soft heart, your wonderful spirit is reflected in your words, that bring a smile to my lips but tears to my eyes. God bless you and your beautiful daughters!
Have you ever read anything by Kathie Snow or seen her speak? She spoke at a conference that I went to and I loved her POV about disabilities. Her website is www.disability isnatural .com if you want to check it out. There's a neat video made by her son who has CP on there somewhere.
I have been reading your blog for a while, since I have had my little Conner home (23 wker). It's helpful to read about someone that has been through all of this before. Your daughters are adorable and they are very unique. Your post was great, just wanted to tell you thanks.
Stacy, mom of 23 weeker Conner, surviving twin of Braedon
www.aboutthelarsons.com
Exactly! I'm so proud of you! You must truely believe it and live it.
I recently linked to your blog in a post on Lincoln's blog about this issue after a rude comment from a reader. Hope that's okay and that I represented your point well.
Eden is different, but she's amazing and will always be. Normal is a dryer setting. :)
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