People have often asked me what it's like having a child with a disability. Someone sent me this story recently and it describes perfectly what it's like. Have a read below:
Emily Kingsley said, “ I’m often asked to describe the experience of raising a child with a disability and to try to help people who have not shared that unique experience to understand it and 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 to Italy. You buy a bunch of guidebooks and make your wonderful plans. You’re going to see the coliseum, the Sistine chapel, the gondolas. You may learn some handy phrases in Italian and it’s very exciting. After several months of preparation and anticipation, the day finally arrives. You pack your bags and off you go to Italy. Several hours later, the plane lands. The stewardess says, ‘Welcome to Holland.’ ‘Holland?’ you say, ‘I signed up for Italy. I’m supposed to be in Italy. All my life I have dreamed of going to Italy.’ But there’s been a change in flight plans and they’ve landed in Holland and there you must stay. The important thing to remember is they haven’t taken you to a horrible, disgusting, filthy place filled with pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks and you must learn a whole new language and you must meet a whole new group of people that you would never have met before. It’s just a different place. It’s slower paced than Italy and it’s less flashy than Italy. But after you have been there for a while and you catch your breath, you begin to look around and you begin to notice that Holland has windmills. And Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and bragging about what a wonderful time they’ve had there. And for the rest of your life you’ll say, ‘Yes, that is where I was supposed to go. At least that is what I had planned.’ And the pain of that experience will never, ever, go away. 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 those very special, very lovely things about Holland. “
Hello again
Monday, August 10, 2009
Thursday, August 6, 2009
Well recovered.....
Ashling has fully recovered from her bug and her oxygen levels are back to normal. She is also eating and drinking the same as before (if not a little better!). We are absolutely thrilled with her and thoroughly enjoying every day with her and her roguish ways!
The other news is that she is going to have a baby sister or brother around Christmas time. Yes, I'm pregnant and due on Dec 21st. We had intended on doing IVF so that the chances of having a baby with Escobar syndrome could be minimised but then we decided to just go for it and pray LOTS! Anyway, the wonderful news is that we have had tests done and the baby does not carry the gene for escobar syndrome. So hopefully we will have a healthy baby for Christmas. Woo Hoo. To say that we are over the moon is an understatement!
As always, thanks a million for taking the time and interest in reading this.
Lots of love, Car, Ger and ash x0x0x0
The other news is that she is going to have a baby sister or brother around Christmas time. Yes, I'm pregnant and due on Dec 21st. We had intended on doing IVF so that the chances of having a baby with Escobar syndrome could be minimised but then we decided to just go for it and pray LOTS! Anyway, the wonderful news is that we have had tests done and the baby does not carry the gene for escobar syndrome. So hopefully we will have a healthy baby for Christmas. Woo Hoo. To say that we are over the moon is an understatement!
As always, thanks a million for taking the time and interest in reading this.
Lots of love, Car, Ger and ash x0x0x0
Tuesday, July 21, 2009
Minor Set-Back
Well the ole winter cold has finally taken its toll on our little munchkin.
About 2 weeks ago, she picked up a nasty virus and just when we thought she'd shaken the worst of it, she got a chesty cough which she just couldn't handle. Her oxygen saturation levels dropped and we ended up back in hospital for 4 days. We've been at home now for a couple of days and though she still has a cough, she is a lot better and is starting to get her energy back.
Unfortunately, it was a wee step back for Ash because she needed oxygen to recover, which was very disappointing for us since she's been off it now for 7 months. We also had to resort to feeding her through her Mic-Key button cause she refused to eat or drink anything. Hopefully we'll have her eating and drinking independent of her tube in another week or so. At the moment she's still quite weak after being sick, and she is quite dehydrated after having the runs for about 8 days so we'll keep giving her fluids down the tube for now.
The other news regarding Ash's health is that we finally have a date to get her foot surgery done. She is getting both feet operated on at the same time on August 27th so please say a prayer for her then. It will be a pretty major surgery, correcting the shape and structure of her rocker-bottom feet, and she will have wire in her feet for a while after, securing the bones into their new position. She will also need casts for about 12 weeks post-surgery but hopefully she'll have them off for Christmas.
Well that's about it for now. Ashling is going through a real cuddly phase at the mo - which we're lovin! She could kiss and cuddle us all day if we'd let her. It's great!
About 2 weeks ago, she picked up a nasty virus and just when we thought she'd shaken the worst of it, she got a chesty cough which she just couldn't handle. Her oxygen saturation levels dropped and we ended up back in hospital for 4 days. We've been at home now for a couple of days and though she still has a cough, she is a lot better and is starting to get her energy back.
Unfortunately, it was a wee step back for Ash because she needed oxygen to recover, which was very disappointing for us since she's been off it now for 7 months. We also had to resort to feeding her through her Mic-Key button cause she refused to eat or drink anything. Hopefully we'll have her eating and drinking independent of her tube in another week or so. At the moment she's still quite weak after being sick, and she is quite dehydrated after having the runs for about 8 days so we'll keep giving her fluids down the tube for now.
The other news regarding Ash's health is that we finally have a date to get her foot surgery done. She is getting both feet operated on at the same time on August 27th so please say a prayer for her then. It will be a pretty major surgery, correcting the shape and structure of her rocker-bottom feet, and she will have wire in her feet for a while after, securing the bones into their new position. She will also need casts for about 12 weeks post-surgery but hopefully she'll have them off for Christmas.
Well that's about it for now. Ashling is going through a real cuddly phase at the mo - which we're lovin! She could kiss and cuddle us all day if we'd let her. It's great!
Friday, June 26, 2009
Ash - nearly 20 months old
Ash is doing well, still eating very little but she seems to be perfectly happy and healthy so we have stopped worrying about her weight.
You should enjoy the following video....it's very cute!
http://www.youtube.com/watch?v=jn2MWyldPjg
Lots of love x
You should enjoy the following video....it's very cute!
http://www.youtube.com/watch?v=jn2MWyldPjg
Lots of love x
Friday, June 12, 2009
Botox is working!
Well it looks like the botox injections are working as Ashling's legs are responding nicely. The bend has decreased in both legs! We are really pleased. Only drawback is that Ashling's Orthopaedic Surgeon wants her to wear the splints 24/7 for 3 months now, instead of 3 weeks! We are negotiating it at the moment as her Physio thinks that this may be too long and that Ash will lose a lot of the strength that she has built up in her legs. We'll have to wait and see.
Ash has been incredibly tolerant of the splints, she has just found new ways of doing things.
Her eating and drinking is still our biggest challenge - we're not really sure how she is surviving as she seems to eat like a sparrow! Anyhow, she'll get there but let's just say, she'll never be a very big person!
I took a few videos the other night of her showing some of her party tricks. She was just about to go to bed and so was a bit tired but they are still cutish.
http://www.youtube.com/watch?v=dGLzblxbCgE
In this one she was getting tired but she still enjoyed her songs - a little bit!
http://www.youtube.com/watch?v=e0yzR26DkZ8
That's all for now. Thanks for taking the interest to look at this. Lots of love xxx
Ash has been incredibly tolerant of the splints, she has just found new ways of doing things.
Her eating and drinking is still our biggest challenge - we're not really sure how she is surviving as she seems to eat like a sparrow! Anyhow, she'll get there but let's just say, she'll never be a very big person!
I took a few videos the other night of her showing some of her party tricks. She was just about to go to bed and so was a bit tired but they are still cutish.
http://www.youtube.com/watch?v=dGLzblxbCgE
In this one she was getting tired but she still enjoyed her songs - a little bit!
http://www.youtube.com/watch?v=e0yzR26DkZ8
That's all for now. Thanks for taking the interest to look at this. Lots of love xxx
Monday, June 1, 2009
Botox Done!
Well Ash had her botox injections and her hamstrings have been somewhat paralysed in an effort to relax the back of her legs. As there is still a bend in both knees stopping her from straighening her legs, the aim of the botox is to allow the physio to stretch her legs and try to get some of the bend to release over time. She's now wearing splints 24/7, which is pretty hard on her cause she can't bum shuffle around the place or ride around on her bike. She was very frustrated for a day or two but it's amazing how much she's already adapted to them. She can now bum shuffle a little bit and she's being incredibly tolerant of them. She'll probably have to wear them for about a month. Hopefully by the end of that time, her legs will be a bit straighter.
In regards to her eating, she hasn't made much progress unfortunately. But hopefully with time, she will take more interest and start chewing food etc.
Besides all of that she is doing wonderfully and is SO much fun at the moment!
I will update with some photos and videos next week.
Cheers, Car x
In regards to her eating, she hasn't made much progress unfortunately. But hopefully with time, she will take more interest and start chewing food etc.
Besides all of that she is doing wonderfully and is SO much fun at the moment!
I will update with some photos and videos next week.
Cheers, Car x
Saturday, May 9, 2009
May 6th: 6 weeks down of Ash not being fed by tube
What a little legend our munchkin is!
Ashling is continuing to do well without tube feeding. She is still just learning how to eat so we can't really count food much in her daily calorie intake (unless you can quantify the salt off a cracker!) but she is experimenting more and more every day and she's getting braver with what goes into her mouth (though most of comes back out again). she's loving her new confidence though. In the past if she put someting in her mouth, she would panic and cry, resulting in us trying to yank it out or she would get sick and bring up a lot more than the little piece that had just offended her! Now she has great control, she puts it in, plays with it, tries biting it sometimes and then confidently spits it out again. The next stage has to be that she'll decide to devour it - well I certainly hope so anyway!!
She drinks about 500 mls of high energy formula per day and some water and that's what's she's surviving on. She has lost about half a kilo overall and is sustaining that (she's about 7.5 kilos) but hopefully in the next month or two she'll start putting on some weight again.
Otherwise, she was supposed to have her botox injections this week but they were cancelled due to being understaffed in theatre. We got a call on the morning - very frustrating. But we got a new date, Mon 18th of May so fingers crossed that that'll go ahead and be successful. They are hoping that if this works properly, i.e temporarily paralyses her hamstrings and gets her quads to work, they'll get a good stretch in her legs and put casts on again for another few weeks. If the overall process goes as well as they hope, she might be able to avoid knee surgery. We can only hope!
On a lighter note, Ash is so much fun at the moment. We are REALLY enjoying her. She cannot pass a person on the street or in the supermarket without saying "Hi Ya", "Hi Ya" until they salute her. She also insists on playing "Hidie...Boo" with complete strangers. What a laugh. Dunno where we got her, Lots of Love Car xxxxx
Caroline forgot to mention that Ashlings favourite game is what every she is playing with, be it a toy or a shoe, she puts it up to her ear and says hi, hi ya, immitating her ........guess who!!!!! I have to agree though she is great fun at the moment and is so enjoyable.
I'll write more next time.......Ger
Ashling is continuing to do well without tube feeding. She is still just learning how to eat so we can't really count food much in her daily calorie intake (unless you can quantify the salt off a cracker!) but she is experimenting more and more every day and she's getting braver with what goes into her mouth (though most of comes back out again). she's loving her new confidence though. In the past if she put someting in her mouth, she would panic and cry, resulting in us trying to yank it out or she would get sick and bring up a lot more than the little piece that had just offended her! Now she has great control, she puts it in, plays with it, tries biting it sometimes and then confidently spits it out again. The next stage has to be that she'll decide to devour it - well I certainly hope so anyway!!
She drinks about 500 mls of high energy formula per day and some water and that's what's she's surviving on. She has lost about half a kilo overall and is sustaining that (she's about 7.5 kilos) but hopefully in the next month or two she'll start putting on some weight again.
Otherwise, she was supposed to have her botox injections this week but they were cancelled due to being understaffed in theatre. We got a call on the morning - very frustrating. But we got a new date, Mon 18th of May so fingers crossed that that'll go ahead and be successful. They are hoping that if this works properly, i.e temporarily paralyses her hamstrings and gets her quads to work, they'll get a good stretch in her legs and put casts on again for another few weeks. If the overall process goes as well as they hope, she might be able to avoid knee surgery. We can only hope!
On a lighter note, Ash is so much fun at the moment. We are REALLY enjoying her. She cannot pass a person on the street or in the supermarket without saying "Hi Ya", "Hi Ya" until they salute her. She also insists on playing "Hidie...Boo" with complete strangers. What a laugh. Dunno where we got her, Lots of Love Car xxxxx
Caroline forgot to mention that Ashlings favourite game is what every she is playing with, be it a toy or a shoe, she puts it up to her ear and says hi, hi ya, immitating her ........guess who!!!!! I have to agree though she is great fun at the moment and is so enjoyable.
I'll write more next time.......Ger
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