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Discussion in 'Pictures & Stories of My Chickens' started by Blooie, Nov 3, 2014.
That is wonderful! I'm glad they made it home! Have a wonderful evening!
Thanks, I will now that I can relax. I was just getting ready to watch the video here when the phone rang - seems Kendra has lost her "woobie" and panic ensued. But we found her spare until the kids can locate hers, probably still in the van! Silly little baby!
I caught a quick glimpse of the psychologists' report on the table at Jenny's. Jenny hasn't had time to make my copies yet. (Every time she goes I get one copy of the preliminary report, Children's Resource Center gets one, her pediatrician gets one, and Jenny keeps hers.) Usually I can wait patiently for mine, but.....
First words that I noticed were in the introduction and they are burned into my mind - "Kendra is a delightful little girl with sparkling, engaging eyes and an infectious giggle." Okay, now I feel better. At least they saw some of the Kendra we know and love!
I just sat here and watched two of the most inspiring, humbling videos it has ever been my honor to watch. @Jessimom you and your lovely daughter did just great! I could hear the pride and the love in your voice, and I would have done the exact same thing you did when she said, "Thank you". I would have just let her words say it all, and you did! Being in a very small town, in a sparsely populated area, I doubt seriously if we'll ever have a "Shane's Inspiration" playground here.
I was on the town council here for 4 years. I had to miss two meetings to be down in Denver with Jenny when she and I lived there for 6 weeks, waiting for Kendra to be born and then after her spinal surgery. One of the things we accomplished was to build a new Splash Park here in Cowley. It's an amazing place, and just being part of the council allowed me input into the design and setup. Oh, I know that any advocate for kids with disabilities could have done that, but being so close to it from the inception to obtaining the funding probably put me in a unique position. And we did it. It opened last summer. And guess who was one of the first kids to try it out .....I have a video of that somewhere. She wasn't sure at first, but as the day went on she just unlocked the brakes on her chair and took off. The camera was put away by then so I could focus on her, but she really didn't need me. If a feature was too intense, she just moved! Every feature of the park is 100% accessible. I need to go find that video and upload it.
Thank you so much!! They shot a lot more footage that day, and I found out they are going to do another video. We had fun shooting it. The lengths you went to with helping get the splash park installed is AMAZING! We have one of those here in my town. Water is only turned on from Labor day to memorial day. They were getting ready to build a new playground, I got the city council to talk to Shane's, they tried to get something going, but there were other people that had friends in higher places, and the park they built is accessible, but it's 1/3 what it could have been if they had partnered with Shane's. It's sad how politics work.
I'm lucky that Jessica is mobile. She can walk and run, but stairs will always be an issue. Ok, going up, but SLOW going down. She has trouble with depth perception. She didn't transition well from one surface to another when she was little. So grass to concrete required her to drop to a crawl and go across and stand back up. Sand or gravel weren't stable enough for her. The bouncy rubber at the Shane's parks was wonderful.
As far as my outlook on life - when we first realized something was wrong with Jess, someone sent this to me. It is so very true!!!
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
Beautiful! Thank you!
I found the video and got it uploaded. It doesn't show any of the features of the Slash Park because I was focused on Kendra - when Katie wasn't being silly anyway.
How fun! I see her feet turn in. Richard's are like that too, only his left foot is worse than the right. He was wearing the cables for a long time. He doesn't any more. His shoes tend to keep them straight along with the foot rest on his chair. When he's bare foot, there goes the left foot.
Jessi..that was beautiful.
My son can see the difference in how..things could be. Not just mom, not just dad. But he can. He can in a way. He never could walk right, and now, he never walks at all. So, he doesn't know .. how..that feels, he just see's how it could be. He has spent more than 50 times in a hospital, lost count at 35 when he was in High School..I just stopped counting. He's had several surgeries after he left home. He knows, it will never stop. There is always, another time. Used to it they ask? What in the world can I say back? I just look at those that ask that question. Then I say. Someday he will walk. Someday he will be perfect. Maybe not in this lifetime, but someday. I suppose he is used to it, in his body, but in his mind? I have heard some wishful thinking come out at times. I'm just happy that he also knows, that someday, he will walk, and even run.
I can't begin to understand the stress of those surgeries on YOU as well as him! To me the worst thing I have ever seen in my life was my daughter lying in a hospital bed - she happened to be in the post ictal phase of a really bad seizure, but she looked lifeless. I will never forget that. Her only hospital stays have been for her seizures. When she was little we had trouble controlling them. Now, she is stable, haven't seen the inside of a hospital for years (other than MRI's). How can anybody EVER get used to the things you have gone through!!
One of the things that I love most about my daughter is that she is happy! She doesn't realize that she is different than anyone else and doesn't care. We met a little boy in her Equestrian Therapy group that was 80% physically disabled, but his mind was 110%. He knew what was wrong with his body and you could tell how frustrated he was. It was so sad. But I think he is smart enough that he will be the one to figure out a cure to what he was suffering from. He was so smart.
Again, Cynthia - I think you are an AMAZING mom! By keeping the faith that he will walk is the reason that someday he will!! The only way that will happen is if you continue to believe that it will happen!!! I wish you the VERY best!!!
@Jessimom Kendra is looking at a lot of surgeries in her future. We'll tackle them one at a time. We know her major abdominal surgery will be first, this summer sometimes. Next she'll begin the long process of getting those shin bones straightened. The one we feared the most, the shunt surgery, hasn't been necessary. Not many kids with Spina Bifida are that lucky. I think it's something like only 6% get by without it, isn't that number about right, Cynthia? Well then, how blessed are we to know two who haven't had to have it - Richard and Kendra!! And the older they get without needing it, the less likely they are to ever need it.
Kendra's left foot is her worst one too. They are taking her out of the upper portion of her braces (the cables) and just going with her AFOs. They are concerned that as hard as they have to be torqued to keep her feet straight for walking, they are going to throw her hips out of whack and undo the progress in her spine. When her feet turn in, she literally trips over them when she tries to walk. She doesn't trust the AFOs. Her confidence in the walking process plummets and she totally stops trying. But then I remember that the walking is temporary anyway. By the time she's in her teens she'll be in the chair full time. So why put her through all the stuff she'd need to go through to walk, and then have her lose that ability anyway? Makes no sense sometimes. But this time spent weight bearing has worked wonders with her back - minimal tethering so far and the scoliosis that was so clear on her x-rays several months ago is so negligible now that they said they can no longer even call it scoliosis. So in that respect it's been invaluable.
Gotta share a funny - Ken and I were in the mall a couple of weeks ago on a sunny day when temps were in the 60s. We hit the food court for a quick bite to eat and sitting across from us was a young couple with the most adorable little baby girl. She was probably about a year old, wearing a little corduroy pair of bib overalls and a striped shirt. So doggone cute! Big brown eyes, bouncing curls, smiling at everyone, animated and just plain happy. But I kept looking at her and something seemed off. It took me a long time to figure out what it was about her that I kept going back to, then it hit me. It was her bare, chubby little pink feet. They weren't pointing in with one toe on each foot hiding under the others. To me Kendra's feet are the norm - anything else looks out of place and, well, deformed.
She already hates doctors, nurses, hospitals, and getting her on an airplane is awful! She starts crying when the car pulls into the airport parking lot, and doesn't stop until the plane takes off. I can't distract her, can't console her - all she knows is that at the end of that plane ride is another hospital. (I fly with Kendra to her appointments at Shriner's in Salt Lake City.) She is okay in flight, and when we get off, but it's that initial getting there and then the waiting. When I pick her up her little heart is just thudding. Breaks my heart. Her regular Spina Bifida clinics are in Denver, and the kids drive her down for those, although when she has her tummy surgery this summer Jenny and I will be living down there with her for that 3 weeks to a month. We don't know if she'll have any complications and have to stay longer, so Kenny can't go with them. Hard to ask for time off at work because when they need to know when he'll be back they frown on, "I don't know, could be 3 weeks, could be longer." for an answer.
Let's here it for the families who sweat, laugh, cry, advocate and serve as cheerleaders for these amazing little (and big) people. We are all incredible, and our kids are beyond anything we could have asked for!!
Awww, I'm so sorry that Kendra is facing so many surgeries! I'm so happy to hear the shunt surgery isn't necessary - I hope that hold true in the future!
All of Jessica's specialists (brain, kidneys, bones, eyes etc) are all at UCLA medical center. It's a teaching hospital - so her doctors are the best in their fields, along with a lot of residents, It's about 40 miles away, but can take up to 2 - 2 1/2 hours to get there because of traffic. We are always an hour or so early. For Jess, it's lab coats the freak her out. She sees a lab coat and starts to cry. First visit with her neurologist 14 years ago, I mentioned that to a resident. Her neurologist takes off his lab coat before he comes in to the room. Since all the records are shared among all the areas, most of her doctors take off their lab coats.
She LOVES to fly! We've been to Australia twice, flown to FL twice and to Boston 4 times. All of our trips have been to see family or friends, and fun has been on the end of the plane ride - only fun. So, it's sad that Kendra has such a negative impression. Well, driving south on a particular freeway, OR her father and I in the same car, she starts to get upset. That SAME freeway, if we go the OPPOSITE direction, she knows that is where the amusement park we go to is. So, it all depends on which direction we turn on that road, whether she is excited or upset.
As for your funny...that is so true. For me, spending time with daughter, I still see an innocent little girl. I see the other kids at her school - they look OLD!
Don't you wish we could bottle the love and determination in these kids and gift it to the rest of the world??