He set up the ten pin bowling pins and we used my roller to race down the new hall and knock the pins down!
My noisy sister wanted lots of turns, too!
(I'm non-verbal, so you can't hear how much fun I am having!)
Cerebral Palsy won't stop me!
Christmas morning with Dad was fun! He set up the ten pin bowling pins and we used my roller to race down the new hall and knock the pins down! My noisy sister wanted lots of turns, too! (I'm non-verbal, so you can't hear how much fun I am having!) Cerebral Palsy won't stop me! They feel like they are letting me down. I'm growing (which is a sure indication of how much I am loved and cared for!) and I'm getting heavy. I'm tall, too. Carrying me is becoming increasingly difficult, even though I hold on pretty well now! We are about to hit our latest stumbling block. We can see it... looming in front of us and blocking the way. It's an emotional block... It brings guilt and fresh heartbreak. It's my hoist. If Mum and Dad can't lift me and carry me, they have to use the hoist... And if they can't carry me, they feel as though they are letting me down. Not so long ago, the word 'wheelchair' was something we could not say.
All we saw were the limitations and the invisible chains to tie me down. Now, after a lot of thought, tears and sorrow... we can't wait for me to get my first wheelchair. We're ready. I know Mum and Dad will be able to say this about my hoist, one day, after a lot of misery and heart break. After many feelings of guilt. But, for right now... the hoist still sits in the corner of my bedroom. Unused. My new bathtub is higher at the sides than the old one.... and this means more bending for whoever gets me in and out of the bath. It's not easy. Once I'm lifted, it's much easier. They can still carry me, and I think they will continue to do that for a long, long time... But lifting me and not being able to bend their knees... this is becoming a challenge. In really simple words, here is why they can't use the hoist... yet: " I feel like I'm letting you down. I feel like I don't love you enough. I feel like a failure, because I can no longer lift you and I should always be able to do that." We hate cerebral palsy. They know none of that is real. They know they will end up hurting their backs (which would make things really, really difficult!). They know they love me and they know they are not letting me down. They know this, but it does not make it any easier to move to the next stage... to have to rely on more 'disability' equipment. We know we will get there, and that one day, we will use the hoist without even thinking about it... but for now, this is a huge emotional stumbling block. Life with quadriplegic, non-verbal cerebral palsy and a vision impairment is never easy. #raisingawareness #cerebralpalsy This Christmas Day business is pretty full on!
Merry Christmas, everyone. Thank you for all of the love and support again this year. We hope everyone has a really safe and happy Christmas. Sloppy kisses from me. xxx We know Christmas is not always a happy time. Mum has a few tears every Christmas. It's a day when she is reminded of what I can't do. Mum and Dad see my noisy sisters running around and loving every minute of Christmas (until it all gets too much and they chuck a tantrum! That's a bit funny to see...) They just wish I could be running around, too. We always make sure we have fun and lots of cuddles. I love unwrapping presents, too! (I just need a little bit of help, but it's fun!) We know some families will be thinking of children they've lost. Some families have very sick children or children with disabilities. For some people, Christmas is really hard, so we want to give them a smile. If you need to talk, someone is always there to listen. Mum has talked to a few people, and it really can help. Here's a link to Life line and the Kids Help Line. Have a happy Christmas, everyone. xx And, for anyone who is having a hard time and it just feels like too much... talk to someone. xx
We have been a bit busy this past week and a half! There has been lots of laughter and fun times! There's been a lot of unpacking and sorting. Can you guess where we are?? We love it! Thank you! xx Read more about me moving back in to my new home here. We are loving having the time and chance to get back to being a family of five. We are feeling so much happier and calmer. We love that my equipment is easy to get to and I am included in everything! Thank you! I can use my floor roller now. Before, there wasn't really any room for me to use it. I had to be watched constantly, because I would hit a wall. Not now! Now, I have a lot more room! Before, my equipment couldn't really get moved through the house... there wasn't enough room, too many corners and narrow corridors. Now, it's easy to move my equipment around. Dad had me chasing my sisters around the hallways in this chair! It was so much fn. They were laughing so much. Aunty Carol had my noisy sisters on my chair, taking us for rides. It's good for my sisters to see me being able to play like this. We have a kid's dining area and play area now! It's so good! Here's my noisy sisters. They love the new house! Mum loves her new kitchen! She loves that while she is in it, she is also with everyone else in the house! She loved trying out the new oven, too! We are so grateful! This has given us such freedom and will really do so much for us, as a family. We will never be able to thank everyone enough. Thank you! Cheers!
Guess what! We moved back in to my new home!
We've still got lots of outside work to do and a couple of inside things need to be finished up... but, we moved back in! I'm sleeping in my new bed! I love my new house! Thank you! Thank you! Thank you! We will share more photos and videos soon. Read more about our moving back in on the Doing it for Dexter blog. Dexter's 2013 Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube Not all therapy is hard work! Do you remember my light box? (It's a box with one side missing. It's supposed to be dark, with some cool and interesting lights for me to watch.) It's to help train my eyes. (Remember, I have cortical vision impairment. My eyes are fine, but the message gets lost between my eyes and my brain. Some days are good seeing days. Other days, I can't see much and everything is a bit dizzy for me.) We have been told that my eyes will keep developing until I am 8, so we are doing what we can! There are some things we can to, to help improve my vision. In the old house, we stopped using my light box. The box was in a section of the house that we stopped using. It was too hard to fit us all in that room while I did my therapy. But, now we are in my new home, I can use the light box again because it's in the main room. We have painted my light box. It's black on the inside, to make it nice and dark. Its white on the outside, to blend in with the main walls. There's a little padding on the floor, but it's better for me to have a hard floor, to remind me that I am working. I have new lights in my light box. I keep grabbing at them and I was very chatty while I was in there, today! Mum and Dad will have to nail the lights in place, so I don't hurt myself! My light box is a great place to hide from my sisters (until they find me that is!) We do a few other things to help me learn to see. We'll show you my new bedroom soon. It's designed to help my vision. See my old bedroom - designed to help me learn to see.
A book to teach me to see Learning to See More about Cortical Vision Impairment My Braille Books Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube How lucky we are to live in this area! Over the past 6 months, the Kiama NRMA has had a tin on their counter. They have been collecting coins for me. They raised just over $500! The Kiama Independent shared this story, which meant that the lovely ladies from Homestead of Hope read that these funds would cover around 80% of the cost of portable ramps for our van. On Thursday afternoon, the ladies from Homestead of Hope presented us with a cheque for $250! This means that our portable ramp has been paid for by the fantastic Kiama Community. Thank you Kiama NRMA and Homestead of Hope! Because Dad works in Sydney, Mum has to do a lot of heavy lifting of my special hi-lo chair. It has to be taken to preschool twice a week. It is also my 'highchair', so it always needs to be brought home. Mum is strong, but lifting the chair in to the van was starting to hurt her back. She has hurt her back and her foot from trying to lift my chair on her own. This ramp will make things much easier! The portable ramp can be folded up, and packed into the back of the van. When we need it, we can unfold it to create a ramp to wheel things down from the back of the car. Having a disability is incredibly expensive and we are so grateful that we are supported like we are. Thank you! When I start growing out of my equipment, we want to share it with other little boys or girls who may need it, so we can help others too. We haven't worked out how will we do this, but we know how important it all is and want to help kids like me get the equipment they need. This is Gladys from the Kiama NRMA.
(Do you know, she has known my Dad from when he was just a baby!) These are some of the lovely Homestead of Hope ladies. Some days, life with non-verbal cerebral palsy is hard. Yesterday was one of those days. I had a bad night and had to stay home from preschool on my last day for the year, which made me sad. My doctor said I am ok, but that Mum was right to get me checked out. I'm ok today though, and had some special visitors this afternoon, but I'll tell you about that tomorrow! One of Those Days
The Many Faces of Dexter Cerebral Palsy Doesn’t Stop Me Understanding Stuff Dexter’s Beach Dash Labels! Be Gone! Out of the Mouths of Babes Cerebral Palsy – Blah! Walking! Laughing! Photographing CP Dexter's Vision Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube When Dexter was just months old, we started working on his fingers and thumbs. The hospital's physiotherapist warned that Dexter might not be able to hold objets, if his fingers stayed in tight fists. If that happened, he would not be able to hold a fork or a spoon. He would not be able to hold a pen or a pencil. He would be very limited in what he could actually do. So, we started teaching him to open his fingers... to stop him from keeping his fingers curled into fists. Every time we held him, we'd gently wriggle our finger into his closed fist, to loosen his fingers. It worked. Those little fisted hands are much looser and much more open. But, cerebral palsy is always there and even now, years later, we still have to remind him, every now and again, to open his fingers and fists. And now, we are being rewarded. Dexter's fingers are reaching for us. It's been happening for a while now, and we are still so pleased, every time Dexter's fingers run across our skin. While we feed Dexter, his hand will sit on ours and his fingers will stretch across our wrist. Those little fingers rubbing over our wrist feel fantastic. There was a time people suggested he would never do that.
With Dexter's house being renovated, he has been sharing a bed with someone. And, during the night, those little fingers would find who ever was sleeping beside him. They would rest on an arm, or a face. He would find our fingers and wrap around them, until he was holding our hands. When we hug Dexter, he almost always hugs back now... his little fingers running across our skin. It's hard to explain just how beautiful this is. It makes us smile. And it fills us with incredible love and gratitude. It takes our breath away, as we realise how lucky we are. |
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