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Thursday, March 29, 2007

Another day out at the New England Horticultural Show

When you have a child who can’t walk, has the odd seizure, eats through a g-tube, takes meds every couple of hours, has auditory defensiveness, and is susceptible to colds that could land them in the hospital, you tend to stay in a bit more than if you had a child that had none of that. At least that has been my response to it. Especially when she was really little and hooked up to the feeding pump and constantly vomiting. Not a good recipe for nice outings.

But before you know it life changes and I am behind in my adaptation to it. This warm season I am on a quest to go out. I want all of us to be out in life more. I want to think more broadly in pursuit of all life has to offer – like I used to before any of this happened. I will need to bring Ellie’s wheelchair/Kid Kart Express to do this. I have been slow to use it outside our home or school. There are a number of reasons for this. One, it’s damn heavy. Two, we only recently purchased a car that it would fit in. Three, in the winter it’s cold. There is no protective back like a stroller. Ellie is literally open to all the elements though Ellie’s lovely teacher, Kristen let us borrow a fleece poncho that goes over the child and wheelchair alike. One of the bus drivers for the other kids in her class made a few to keep the kids warm in their wheelchairs. Does that just make you tear up or what? Small kindnesses always make me leak tears as well as the fact that I envy anyone handy with the sewing machine.

The last reason I have not brought her out in her chair much is that there is nothing that will immediately denote disability like special seating/wheelchairs. Sometimes I feel like I fake it a bit. I pass Ellie off as a nondisabled child. Usually only people who work in the disability community really get that she has issues. And they are great. They ask thoughtful respectful questions, help us with doors, and offer resources as well as communicate with Ellie well. I have no problem with all of that. I think most people looking at her in passing may or may not intuitively sense she is different but her cuteness usually wins them over and they ask, “How old, two?” Ah no, four. “Oh” puzzled expression runs across their face and back to oooing and aaaing the pigtails. Jacqui you are sooo not alone there. ;-) I mean let’s face it; the child has an amazing head of hair inherited from both sides.

Trying to “pass” has not been such a conscious thing. I have only realized it recently when relatives ask me why we don’t bring her out in her chair. Not bringing her out in her chair saves on questions and stares though people wonder why we use the handicap spaces to park. When Ellie is in her stroller people come up and oooooh and ahhh at her beauty and I get treated like any other mom. I worried if she were in her wheelchair if it would change this. Would people still oooo and aaa and tell her she was adorable or would they hold back? Also, some of my anonymity, which I find comforting and safe, disappears when we appear different. And for the H.H.’s out there – do not mistake these sentiments for shame but more avoidance of people’s ignorance.

There is a practical reason as well to start using her chair. Access. I have been frowned at and almost denied access to certain places because they don’t accept strollers. The Isabella Stewart Gardner Museum in Boston did that. They admitted us and then as we were walking around with Ellie in her stroller a guard stopped us and said you can’t use that stroller. (Would have been good of them to tell us this before taking our money.) We said, ah she can’t walk, she has cerebral palsy and is too heavy to carry. The young security guy said back to us, well we still can’t allow the stroller. I don’t think it dawned on him what I was saying. I think people just think I am lazy bringing Ellie round everywhere always in her stroller. Dave was disgusted and said, let’s leave. I said, no way. Then I upped the ante really quickly and said, so you are denying access to this museum to the disabled? My daughter is handicapped and should be able to see this museum like everyone else. I want to see your manager now. The poor guy turned a bit pale and radioed his manager straight away. There were a bunch of innocent museumgoers witnessing this whole thing. Dave was like, ah honey, it’s ok, let’s go; translation: my attempts to fade into the woodwork and fall through the floor have failed. The boss man came and after I explained the situation he back peddled furiously and said, of course it was ok to bring that stroller, his guard mistook it for another kind of stroller that is too big to fit into many of the narrow rooms.

It was then I decided that to museums and places it is not bumpy or boggy, like most indoor spaces, I would bring Ellie out in her chair. It wasn’t entirely fair to put the museum guards in a position to look like idiots. Not that we intended that at all. But the frowning disapproval of Ellie’s stroller happens whenever I bring her to the library and the bookstore and other small spaces like restaurants. The truth is, unless we are going on a trail or beach or somewhere where the road is bumpy like our street and the surrounding streets of our neighborhood, Ellie is more comfortable in her chair. It gives her loads of support and is sized perfectly for her. This is the most important reason of all to use it. So far we have taken Ellie out in it to a restaurant once. Dave and I actually got to eat sans squirmy four-year old in arms. We actually tasted our food versus rushing to finish so we could trade off holding Ellie and the other could eat a lukewarm meal.

This weekend last we took Ellie and her chair to the New England Horticultural Show. We were there for at least 3 hours and we had forgotten Ellie’s toy phone that we usually attach to her harness so we were very happily surprised when instead of whining the whole time and being bored to tears, Ellie loved it. And I mean LOVE. We wheeled her around the entire place checking out amazing indoor fairy tale landscapes. She learned about grasses, smelled flowers, looked through glades and laughed and giggled, and charmed all around her.

I did notice that no one came up to admire her pigtails, but that’s ok. She had a great time with us and I don’t think she noticed. There was also an artisan component to the show and as we were wheeling through it Ellie started laughing and squealing in delight. I took her in the direction she was looking and discovered a bunch of these unique whimsical bird houses that as it turned out double as homes for house ghosts according to Norwegian tradition. And whom doesn’t need a good house ghost? Especially since they are reported to protect old houses from faulty wiring and other potential problems and danger, quite perfect for our beloved ramshackle abode. As I brought her closer to the source of hilarity I asked her which one she liked best. It turned out to be this one. We have taken to calling it, via our dear friend Linda’s lead, “Irish guy”. It had to be the Irish one. Ellie was so impressed with him we knew he must be ours. Of course we took him home. Every time she sees him she cracks up and launches on a long babble which I am sure he understands perfectly. All of this makes him worth every penny. It was the last day of the show, which is a good day for purchases as all the vendors dreading having to schlep all their wares home drop their prices by 30 or more percent.

We also checked out a booth of imported bronze garden sculptures when this beautiful woman who was running it came up to Ellie and squatted to get lower and began to have a chat. She asked if Ellie liked rabbits. Dave translated and said, “Ellie, do you like the bunny’s who go squeak, squeak?” (Because that is what they do in one of her beloved books.) Ellie laughed and the woman produced this bronze leaping rabbit sculpture just for Ellie. She insisted on it being a gift. She spent a little more time connecting with Ellie. It’s odd being the guardian of another soul in this life. I have to step back sometimes and let that beloved soul connect with old friends who outwardly are strangers even if it means accepting gifts from them that on the surface feel a little like pity. The woman was so intent on connecting with her I put my discomfort aside and thanked her for the gift. It was also one of those rare moments when you sense that something special has happened that you don’t understand. I still don’t understand it but mysterious strangers giving gifts like a bronze leaping rabbit sculpture is a cool experience to have. Ellie seemed totally down with it, so who am I to judge? Ellie has this amazing presence and people with open hearts always respond to it. Maybe this woman was repaying that gift?

Anyone know what leaping rabbit means? It was an Asian store. In Native American Indian Medicine Rabbit symbolizes fear. Does a leaping one mean overcoming that fear? Are you thinking poor Dave at this point? You see how my mind wanders? It’s the philosophy background, I can’t help but wonder at the symbols in life as they appear. Any thoughts on that would be appreciated. I asked Ellie but she just laughed at me.

We all had a great time. I couldn’t believe what a great show attendee she was and I can’t help but attribute it to proper support, the added height her chair gives her, and me conquering my fears of people’s reactions to our differences.

20 comments:

Mel said...

This post was very well written. My feelings about this very issue mirror yours. We are trying out a chair for the first time and it seems Crew is happier riding in it due to sitting up taller and higher yet its bulky and makes a statement that I'm not ready to make.

I love the story of the leaping rabbit. I often wonder why so many strangers are attracted to Crew yet I "get" it. I'm sure the woman was touched by Ellie and I think your correct in that she was repaying the gift.

Thanks!

Anonymous said...

Nice pics of Ellie .. not one of my best though bebe? I think I look like I slipped a disk. I think Irishguy is going to make a fine birdhouse for some lucky bird family! (The birds get in an out through his nose for those wondering).

/Dave

Ryn Tales said...

Thanks Mel. It is a hard statement to make. But I am convinced that the best way to deal with my experience raising Ellie is to embrace it as much as I can. And that "as much as I can" changes and grows bigger as I do. But sometimes it bloody frightening and slow to grow. My own fear of some of these things has kept us in. And after this winter I am a bit cabin crazy and really miss the beach!

Good luck with dealing with Crew's chair and all it's big statements. You're not alone.

Kathryn

Angela said...

We just ventured out for the first time with Jack's chair and it was only to school! I was so proud -- he looked amazing and tall and HAPPY!

I have a lot of fear...I asked a dear friend what would people think to see a pregnant lady pushing a wheelchair containing a 4 year old? Would they assume the baby would need a wheelchair too when she got bigger? Would they pity me? I certainly don't want that. I want them to be as proud of Jack as I am! I want them to see the hadsome little man sitting tall and helping to push his wheel every few steps...

Because of the weather and my being pregnant we haven't used the chair except inside for practice. This WILL be the summer that we're out though!

I experienced the stroller-hater attitude this week when I had to go to the doctor for a chest cold. I got stares, sighs, and I am positive a few rolled eyes. I actually really wished I had the chair at that moment -- because Jack passes very well for a small kid in a stroller or shopping cart, etc.

I guess I just wanted to say (not as well put together as you did) I agree and feel very much the same way.

PS -- I love Ellie's chair! She's so, so, so cute!!!!

Angela

Emma said...

Sounds like the show was a great time and that you learnt a lot too. Reading this entry, I was struck by the thought that you might like this poem. It's not totally appropriate for this situation but I think it works and personally I love it and think it sums it up completely

My New Set of Wheels

There you stand, and I see you stare
Thinking, poor dear, she's stuck in that chair.
But I'm not sad, I'm very happy because
I haven't forgotten the way it was.

You'd say, "How about a trip to the zoo?
A walk in the park will be good for you."
I was thinking tomorrow, I'll be a wreck,
From my aching feet, to the pain in my neck.

You'd want to go shopping, all over town.
I was thinking but there's no place to sit down.
For you it's a snap, just to go to the store.
But for me the ordeal was more of a chore.

Now I can go wherever I please
I can shop in the mall with newfound ease,
Do all the things that have to be done,
And even go out and have some fun.

So, do you want to know how it really feels,
To be sitting here between these wheels?
Can you remember back that far,
When you got your very first car?

Well, that's how these wheels feel to me.
They don't hold me down, they set me free.
So, don't think all those pitiful things:
These aren't wheels, I think they're my wings.

By Darlene Uggen
from Chicken Soup for the Unsinkable Soul
Copyright 1999 by Jack Canfield and Mark Victor Hansen

Ariane said...

Hi my name is Ariane, I found your blog a few weeks ago and have been reading through all the old and new posts. I love this post, very sweet pics of ellie=) I will go sign your guestbook and further introduce myself but I had a few thoughts for you about Rabbit symbolism....

Rabbit's often symbolize: alertness, resourcefulness. They can also symbolize: fertility, mystery, fear of tragedy, long life, quick-thinking & strengthening intuition. They call your mental fears to you in real life. They teach you to stop "what if" thinking.

Animals can be spirit guides as well so it is possible that this woman sensed one of Ellie's spirit guides was a rabbit? Well, just a few thoughts.

Lisa said...

Kathryn, I love your blog and all of your ideas and love to see how you think and how hard you are working to give Ellie the greatest childhood and life that you can. I know you are going through a lot processing your role in Ellie's life.

This post reminded me a little of the pain I felt when my mother/family would not want me to take my cane or guide dog out in public. It does change everything, it does cause you to lose your anonyminity. It does change perceptions of you. My family was not used to that and did not want to experience that. With me and a cane, they became disabled by proxy. They got the stares, the attention, and sometimes the attitude. And they did not like it. I did not usually have a choice to pass/not pass, disability and all the attention that comes with it was my life and what I dealt with every day. They did not want to be associated with that life. It made them uncomfortable.

Through the years, they-my mother especially-got better about it, but never completely comfortable with it. I can understand the feeling of just not being used to the stares and attention. But their reluctance to be seen with me when I was using a cane/guide dog was very hurtful to me. I don't think it was disability shame exactly, it was that they were uncomfortable with the attention and the ramifications of that. But what it did was separate us. It made me feel like my life was okay for me, but they didn't want to have to participate in it because they weren't disabled. In many ways, when you are with a disabled person, you become disabled yourself. If Ellie couldn't have gotten into the museum, all of you couldn't have gotten in. And what their attitude said to me was that what I experiences in public was so BAD, they weren't going to join with me in my experience, but do everything they could to avoid it. I didn't doubt that they loved me, but it created a void between us and our two cultures. They rejected mine.

I also recently listened to D as he told me how hurt he was about some comments his mother made about his new wheelchair. It has a head rest and a tilt back mechanism on it. Compared to his old chair, he looks a lot more...disabled in it. It supports him so much better and he likes it so much and he really worked hard to get it. And his mother looked at it and said, "What's next? A sip and puff? You look like a total quad in that thing!" (She's crazy, and I know you wouldn't say anything remotely like this, but the point is, our parent's uncomfortableness about, if not us, than disabled life, hurts.)

I just wanted to share this with you. I hope you don't mind or that it doesn't sound all preachy-weachy. I don't want you to feel bad, and it seems like you are well on your way to pushing through some of the issues you will face regarding Ellie in a wheelchair. But one of the hardest things about being a disabled kid, in my experience, was that you are sometimes a minority in your own family. Their uncomfortableness with all the crap that goes along with disability seems sometimes like they are not with us, but wanting to get away from us.

My experiences may not have anything to do with what you are dealing with and your reluctance to take Ellie out in her chair, but I thought I would share them as an adult (former child) with a disability whose had to deal with some of my parents processing of disability stuff.

Keep writing this great stuff! and the horticulture show sounded fabulous! Lisa

Ryn Tales said...

Wow - so many great comments/thoughts here. Thanks to everyone!

Emma - I love that poem. It made me tear up. We are trying to get Ellie a power chair because her pedi thinks she can do it. I imagine that being able to go where she wants, when she wants and not having to roll to do it will feel like flying. I want her to have that more than anything no matter how heavy the chair is to deal with! Thanks for sharing this.

Angela - I think you hit the nail on the head of why it makes me sad to publicly display Ellie's differences. When she is in her stroller, people see her for the beautiful, smiley, cutie she is. I think they do hold back a bit when she is in the chair. It makes me want to shout, no you don't get how incredible she is and what she has accomplished despite being so seriosly injured and having such a rough start! I also want to say to the starers - don't you dare pity us as that totally devalues our wonderful life. And as Ellie gets older and my fear of her dying is easing part of my just doesn't care about the stares and frowns. It's actually a great way to weed out people you wouldn't care to know anyway so who gives a crap what they think.

Lisa, God that sucks! I do deeply understand what it feels like to be rejected by ones family as mine did a great job of that. It's so painful. God forbid I ever give Ellie that impression. No way. I will soooo join her where she is forever. She is the greatest thing that ever happened to me and I am working hard not to let my own shit be hers. I know what that is like. My mother showed me quite completely what not to do as she was great at rejection and still is.

But I really appreciate your comment because I don't want Ellie to misinterpret anything or to even remotely feel like I did growing up - ever. I think if you really love someone you join them where they are in whatever state of being that is. I am up for that with Ellie. It's that headlong plung into love and the depths of the heart. But your comment will remind me to be sensitive to her understanding of my actions and be careful not to give her the wrong impression.

I love it that you read my blog. Your blog was the second one I ever read and I love it in all it's volumnous glory!

Kathryn

Lori said...

Kathryn-

Great post. You and Ellie are both wonderful!

I know this wouldn't be something that Ellie could do (yet!), but the other day I saw a little girl at the bookstore on a tricycle. At first it startled me to see her peddling down the aisle, but when I noticed her feet were strapped to the peddles I realized that she was using the trike for mobility, not just entertainment. She was darling and I told her what a beautiful pink trike she had. She corrected me that it was a "Bike." I said "Of course it is! My mistake! It is a fantastic pink bike!" To which she rewarded me with a beaming smile.

I thought that was so clever for this particular little girl. I have no idea what her physical limitations are but she clearly loved her unique mode of transportation. I noticed Dad following proudly along behind her. It was a sweet scene.

Anonymous said...

Oooooo....she looks soooo happy at the flower show! I'm glad you all had such a great time. The birdhouse is a hoot and the rabbit sculpture is really unusual, I'm glad Ellie loves them. I'm leaving this comment because I have Ellie's picture with me at home and wanted to E-mail it to you but forgot your E-mail address! Could you please send it to me? Thanks! - Kristin (kristin.carlson@perkins.org)

Danielle said...

Is she not just the cutest? Wow. Very interesting post. I wish I had something to add, but I think you've got it covered. Thanks for sharing the pix!

23wktwins'mommy said...

After a tough afternoon torturing myself by reading blog commentors that usually get me upset (you've mentioned *her* before) I click on your blog linked to my page. Alas, I read of a mother loving her beautiful daughter.
I just wanted to say thank you. I can now wipe the tears from my eyes, bring my two into our bed, wait for hubby to bring home the movies from Blockbuster, and enjoy tonight. Thank you, thank you, thank you.

Anonymous said...

Ellie looks great in her chair, real cute pics, and whats more important is that she likes it. You go Ellie, if you see any starers blow them away with one of your cutest smiles :-) love & hugs Aunty Rie.

Anonymous said...

Some amazing posts, Kathryn - am glad to see you, Dave and Ellie flying along together through the world (though I admit it probably doesn't feel like it all the time!) Lots and lots of love from us, xx p

Claire said...

I found this post very interesting, largely because I can't remember feeling like that. I had two children close together, so by the time my disabled daughter was two/three, I was pushing a double buggy, then a bog-standard wheelchair.

I think in some ways, one of the things you have to get used to is a loss of privacy, invisibility. Large junks of your life become kind of public property, with everyone having a view. I got used very early to what I think of as the eye flick. Cultivate a thick skin, and don't assume everyone is thinking negative thoughts. People ARE sometimes uncomfortable with disability, but most will take their cue from you.
Lisa's comments are heart-breaking, and underscores my unease with some of the other threads around. If as parents we adopt these negative attitudes then what?

Ryn Tales said...

Claire,

I totally agree - if we adopt a negative attitude then what? So true. My post is about my realization that I had a negative/non productive attitude and realizing it and dealing with it productively.

Lisa's experience is heartbreaking and something I want to avoid for Ellie and any child.

Kathryn

Ryn Tales said...

To Ariane and Angela and Danielle - Thank you for your kind words and thoughtful comments. I just discovered all your wonderful comments on my dashboard. For some reason they never made it to my email so apologies for not publishing them more quickly!!

Ariane - thanks for the rabbit symbolism input - I love that! How perfect about facing your mental fears as this is what this post is about. I also did not even think about Ellie's spirit guide animal possibilities - very, very cool. Thank you!

Anonymous said...

Kathryn,

LOVED seeing how your warrior princess is growing. She's beautiful and i can see/feel the glow around her. Simply awesome. You're such an amazing mom and continue to be an inspiration to me.

I had to comment about the rabbit - in the Chinese zodiac year it's considered the luckiest sign. (I'm a rabbit and I try to remember to count my blessings.) They're smart, charming and peace lovers.

In Chinese mythology rabbits are a symbol of selflessness as well. It sacrificed its life and now lives as an immortal on the moon with the Lady on the moon. Sorry, can't remember details.

Lastly, if "rabbit" is the first word you say each month, it means you will have lots of luck for that month. I learned that from www.liztech.com (aka the Bead Lady) where they sell a new Rabbit pin.

Can't wait to meet Ellie in person and have our daughters meet.

Much love & hugs,

Eany xxxooo

Kathryn said...

Eany - great to see you on Ryn Tales! I didn't know you were lurking. ;-)

Thanks for the info on Rabbit, you described Ellie's personality in your description.

I want our daughters to meet one day too! I hear of yours through your big sis every now and then. Your little one is lucky to get such great parents!

Miss you!
L,
Kathryn

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