Have you ever seen somebody's heart break?
There is this empty and distant look where the gleam in their eyes used to be and a false smile hiding the lump in their throat threatening to explode into tears at any moment.
I saw it in Liam when we arrived at pre-school the morning i forgot about 'dress up day' and he was the only one not dressed up. Today i saw it again, this time in the Grandmother of a boy who has just started school with Jai.
Aiden, as he happens to be named, has just been diagnosed with Autism. He isnt severe, not that that fact lessons the impact any.. Today when i arrived to pick up Jai, Aiden came bursting through the door into the classroom from the outside area with tears streaming down his little face flapping his hands violantly, with a very angry look on his face he proceeded to the little washroom where he turned on all the taps and splashed his hands down in the trough forcefully for a few seconds and then as the water's obvious calming effect came into play and he just let his hands sit in the trough under the flowing water the anger fading slowly from his expression.
Aidens grandmother followed inside behind him but stopped momentarily at the door to the little bathroom as if to say a prayer she stepped back and looked at the wall then back at me and smiled that false smile you give when you want to pretend you are strong when all you want to do is dissapear into the ground her heart was breaking for her grandson. Part of me wanted to get up and give her a hug and part of me wanted to cry and run away- Aidens little outburst was in no way unique at the EIU and will be long forgotton by the following morning, the reason it stays with me and that the look on his grandmothers face will probably remain etched in my mind forever is that i understand that "defining moment" (to quote Dr Phil) when your whole world collapses and you realise that everything from this day forth will be different. No more planning for college and dreaming of (great)grandchildren. Only right now is a certainty.
These moments that hit me every now and then when Jaiden does something little but undeniably "abnormal". That king hit to the head that is closely followed by the lioness protective instinct of 'keep the hell away from my child' and then that hollow feeling that continues on till the next time. i guess its stages of grief really Denial, Anger, Acceptance...
As my son clings to me crying frantically over his bleeding knee, which is only bleeding because he compulsively picks at it and i know he is only crying because of his new found anxiety over blood. It pains me a great deal that he doesnt realise if he stops picking the blood will stop and that even if he did realise this he probably couldnt stop himself picking anyway.
Numb. Acceptance. Must pick up Liam from school and life goes on.
Monday, October 29, 2007
Sunday, October 21, 2007
Wahoooo!!!
A big achievement this week:
Jaiden has worked out how to button up his pyjama top!!!
He has finally got enough strength in those little fingers to get the button through the hole! He is so proud of himself (as am I) and wont let anyone within two metres of him while he is doing it for fear they are trying to 'help' him!
Jaiden has worked out how to button up his pyjama top!!!
He has finally got enough strength in those little fingers to get the button through the hole! He is so proud of himself (as am I) and wont let anyone within two metres of him while he is doing it for fear they are trying to 'help' him!
Thursday, October 18, 2007
sing me a song your the piano man...
I finally have a piano in my life!
I have wanted a piano since i was little and never had the oppertunity.
I spoke to an old friend from my youth a few months ago and spoke to her about many things including WS and Jaiden.
She rang me up out of the blue the other day and asked if i wanted a Piano. She said she remembered how i always wanted one and that i also wanted the kids to have music in their lives. So she has moved to Melbourne and left me with not one but two Pianos. One little one to play and a bonus almost 100yr old Pianola which Holger will try to restore to its original glory.
Jaiden hates it and screeches "too loud" with his hands over his ears, that is unless HE is playing it then of course the noise doesnt seem to bother him in the slightest and the rest of us need to put our hands over OUR ears!
YAY!!! im so excited :)Now i just have to learn how to play the piano.....
I have wanted a piano since i was little and never had the oppertunity.
I spoke to an old friend from my youth a few months ago and spoke to her about many things including WS and Jaiden.
She rang me up out of the blue the other day and asked if i wanted a Piano. She said she remembered how i always wanted one and that i also wanted the kids to have music in their lives. So she has moved to Melbourne and left me with not one but two Pianos. One little one to play and a bonus almost 100yr old Pianola which Holger will try to restore to its original glory.
Jaiden hates it and screeches "too loud" with his hands over his ears, that is unless HE is playing it then of course the noise doesnt seem to bother him in the slightest and the rest of us need to put our hands over OUR ears!
YAY!!! im so excited :)Now i just have to learn how to play the piano.....
Wednesday, October 17, 2007
21 things i love about Jaiden...
Some of the others are doing '21 things' posts as part of 31 for 21, so heres mine,
21 Things I love about Jaiden:
21. His big smile that lights up a room.
20. The way he giggles hysterically when you tickle him.
19. How peaceful he looks asleep.
18. How he defends his brothers from all the scary stuff he hates
(eg. "DONT WASH MY BRUDDA'S HAIR!! HE DONT LIKE TO!!" hands on hips, angry tone!)
17. The simplest things in life like watching butterflys bring him pure joy.
16. the way he sings ABC' "a b c d e f g, gggg elephant o p.. next time sing with me!"
15. The way he shows excitement with every part of his body.
14. How he says, "I love you mum" with such honest eyes.
13. That no matter what he is doing, he is singing while he does it.
12. How much he loves his school, his Jenny and his rocket boots!
11. The way he says, "im sorry mum..." in a regretful tone big pout on his lips, then looks up at you and gives the biggest grin ever, when he has done something naughty, makes me just want to hug him!
10. The way he remembers people he only met a few times and hasnt seen in years.
9. If he suddenly dissapears he can often be found in the bathroom cleaning his teeth again, "Make my teeth shine, mum!"
8. The way he trys to lie and will walk passed you, eyes wide and say, "i didnt take the chocolate, mum." and i say was it yummy? and he says "YES!!" with that cute grin.
7. How he sneaks into my room to play my guitar.
6. The way he effortlessly can make a good sound out of a Digeridoo (not easy!)
5. How he calls the moon 'Australia' and there is no changing his mind!
4. The way he can spot an aeroplane high in the sky long before i can see or hear it.
3. The cute way he sits on his head upside down on the couch while he watches TV.
2. The way he yells "To IFTY and B'yond!" as he jumps off various things around the yard.
1. The way he gives you the biggest bear hug in the world when he gets up in the morning.
21 Things I love about Jaiden:
21. His big smile that lights up a room.
20. The way he giggles hysterically when you tickle him.
19. How peaceful he looks asleep.
18. How he defends his brothers from all the scary stuff he hates
(eg. "DONT WASH MY BRUDDA'S HAIR!! HE DONT LIKE TO!!" hands on hips, angry tone!)
17. The simplest things in life like watching butterflys bring him pure joy.
16. the way he sings ABC' "a b c d e f g, gggg elephant o p.. next time sing with me!"
15. The way he shows excitement with every part of his body.
14. How he says, "I love you mum" with such honest eyes.
13. That no matter what he is doing, he is singing while he does it.
12. How much he loves his school, his Jenny and his rocket boots!
11. The way he says, "im sorry mum..." in a regretful tone big pout on his lips, then looks up at you and gives the biggest grin ever, when he has done something naughty, makes me just want to hug him!
10. The way he remembers people he only met a few times and hasnt seen in years.
9. If he suddenly dissapears he can often be found in the bathroom cleaning his teeth again, "Make my teeth shine, mum!"
8. The way he trys to lie and will walk passed you, eyes wide and say, "i didnt take the chocolate, mum." and i say was it yummy? and he says "YES!!" with that cute grin.
7. How he sneaks into my room to play my guitar.
6. The way he effortlessly can make a good sound out of a Digeridoo (not easy!)
5. How he calls the moon 'Australia' and there is no changing his mind!
4. The way he can spot an aeroplane high in the sky long before i can see or hear it.
3. The cute way he sits on his head upside down on the couch while he watches TV.
2. The way he yells "To IFTY and B'yond!" as he jumps off various things around the yard.
1. The way he gives you the biggest bear hug in the world when he gets up in the morning.
Tuesday, October 16, 2007
as is life...
Been a bit crook recently and having trouble concentrating on most things. I think work is getting a bit fed up with me as i seem to be having trouble remembering what a gold fish is.
I finally went to a NEW doctor about these annoying headachy feinting spells and numb fingers and instead of the usual blood work he sent me off for a CT scan and i have to see a Neurologist for a nerve conduction and EEG. The CT scan was clear (thank goodness) and now i can prove to people i do have a brain as i have a picture of it. I was given the miss information that CT scans dont hurt. PAH! your head goes warm and it feels like somebody puts a bolt of lightening into your head several times really quickly, then stops equally as quickly. Ow!!
On the bright side the new doctor is really nice and i had a quick yarn to him re Jai and he said to bring Jai to see him after the Geneticist appointment so we can work out whats next WS or not.
I read on the list serve there was a Law & Order SVU episode involving a WS girl last night, Its a shame Australian TV airs at a different time so i have no idea when that episode will show here as i would like to see it!
Jaiden has been an angel all week which is nice, the kids are back at school for term 4 and Jai was very excited to see his Jenny again. LOL its cute how much he asks "we go to Jenny, mum? we go see Jenny now??"
Lachie is cutting his last two teeth and is extremely cranky about it and Liam is generally whingy at the moment, i think being back at school has tired him out a bit.
I just want to sleep for a few days and i should be fine :)
I finally went to a NEW doctor about these annoying headachy feinting spells and numb fingers and instead of the usual blood work he sent me off for a CT scan and i have to see a Neurologist for a nerve conduction and EEG. The CT scan was clear (thank goodness) and now i can prove to people i do have a brain as i have a picture of it. I was given the miss information that CT scans dont hurt. PAH! your head goes warm and it feels like somebody puts a bolt of lightening into your head several times really quickly, then stops equally as quickly. Ow!!
On the bright side the new doctor is really nice and i had a quick yarn to him re Jai and he said to bring Jai to see him after the Geneticist appointment so we can work out whats next WS or not.
I read on the list serve there was a Law & Order SVU episode involving a WS girl last night, Its a shame Australian TV airs at a different time so i have no idea when that episode will show here as i would like to see it!
Jaiden has been an angel all week which is nice, the kids are back at school for term 4 and Jai was very excited to see his Jenny again. LOL its cute how much he asks "we go to Jenny, mum? we go see Jenny now??"
Lachie is cutting his last two teeth and is extremely cranky about it and Liam is generally whingy at the moment, i think being back at school has tired him out a bit.
I just want to sleep for a few days and i should be fine :)
Tuesday, October 9, 2007
Birthdays and aging
Wow, it seems to be birthday season - all the little ones are growing up so quickly.
We have been to so many Birthday parties recently that cake is becoming a regular part of the kids diet.
Its Jaidens birthday at the end of next month, the big 4. He has been waiting for this day since his last birthday and asks every day without fail if its his birthday yet and will he get his frog cake?
Jaiden has loved frogs since i can remember - i used to keep 2 green tree frogs in a terrarium and Jaiden would just stand and stare at the tank for ages hoping to catch a glimpse of the frogs, he often would find 'Kermit' and 'Freddo' in the vast tropical overgrowth somewhere under a leaf, he has a great eye for small details - he spots planes in the sky so far up i can only just get a glimpse of the reflection the sun makes off their metal body.
I wonder if we will have his diagnosis by his birthday, the appointment is on the 19th and his birthday is on the 28th - i have been told by other Aussie WS parents that the FISH results take up to a month to come in after the blood has been taken, Im so sick of waiting now, i just want time to hurry up so i can confirm or rule-out. At least we should definatly know by Christmas.
I feel really old these days, im always tired and my mind and body just dont seem to be keeping up with the speed of my life. Im only young in years, but in someways i feel so ancient, its like ive crammed an extra decade in there somewhere- Married, Working, House, 3 kids and a dog. Im only 22. Somedays i think i just want to run away home to my mother and cry on her shoulder, yet at the same time i have no regrets. At least i will have more time to take a cruise or sip wine in my retirement, or maybe i wont, but i dont really like to think about the possibility that one of my children may never be able to live away from home.
We have been to so many Birthday parties recently that cake is becoming a regular part of the kids diet.
Its Jaidens birthday at the end of next month, the big 4. He has been waiting for this day since his last birthday and asks every day without fail if its his birthday yet and will he get his frog cake?
Jaiden has loved frogs since i can remember - i used to keep 2 green tree frogs in a terrarium and Jaiden would just stand and stare at the tank for ages hoping to catch a glimpse of the frogs, he often would find 'Kermit' and 'Freddo' in the vast tropical overgrowth somewhere under a leaf, he has a great eye for small details - he spots planes in the sky so far up i can only just get a glimpse of the reflection the sun makes off their metal body.
I wonder if we will have his diagnosis by his birthday, the appointment is on the 19th and his birthday is on the 28th - i have been told by other Aussie WS parents that the FISH results take up to a month to come in after the blood has been taken, Im so sick of waiting now, i just want time to hurry up so i can confirm or rule-out. At least we should definatly know by Christmas.
I feel really old these days, im always tired and my mind and body just dont seem to be keeping up with the speed of my life. Im only young in years, but in someways i feel so ancient, its like ive crammed an extra decade in there somewhere- Married, Working, House, 3 kids and a dog. Im only 22. Somedays i think i just want to run away home to my mother and cry on her shoulder, yet at the same time i have no regrets. At least i will have more time to take a cruise or sip wine in my retirement, or maybe i wont, but i dont really like to think about the possibility that one of my children may never be able to live away from home.
31 for 21
Michelle (Big Blueberry Eyes) Blogged a fantastic post about some of the physical characteristics of DS, go have a look! http://mdbeau.blogspot.com/
Monday, October 8, 2007
Best Laid Plans..
Im failing miserably at this 31 for 21 thing,
I have blogged only twice and its already the 9th …
I blame my writers block on my slowly deteriorating brain which i fear will totally cease to function at some point in the near future.
I was supposed to work Saturday but by 10am i had dignified myself by passing out on a customer in the midst of a very interesting discussion about a Labradors flea problem, so i spent the rest of the day in the staff room asleep on a rather large dog bed - i must say the bed was very comfortable and i think that i will be able to sell alot more of them now that i have had this first hand experience.
Im not sure what triggered this particular incident but as the sensation in my fingers and toes is barely functioning right now id say i will feel a bit perculier for another few weeks then i should be back to my sparkling self, fine motor skills and all, until the next time. Sigh, sometimes im more complicated than my son.
Speaking of, Jai has had a really good week, he is just so cute sometimes! He had a minor freak out over my mothers washing machine today but instead of screaming like a banshee he put his hands over his ears, pout on his little face and said "I dont like 'EEEEE' mummy, Nanna's washing-sheen is scary" It always amuses me the way he imitates the sounds that bother him - especially fireworks, thats a really cute impersonation, one which i would probably enjoy a whole lot more if the poor kid didnt look so frightened when he did it!
Lachie was driving me nuts today, he is into EVERYTHING and if he cant reach it he finds a chair and pushes it around with him to reach what he wants. After a brief discussion with Holger about even MORE child safety locks i am starting to think i should just lock him in his room in a straight jacket to save money.
The weather is warmer and im starting to come out of hibernation, my resolve to get fit yesterday started with a coffee and ended with an entire packet of Tim Tams. I have two pairs of pants and one T shirt which fit me comfortably and dont make me look like im doing Kath & Kim impersonations. I DONT NEED CHOCOLATE!!!!!
I have blogged only twice and its already the 9th …
I blame my writers block on my slowly deteriorating brain which i fear will totally cease to function at some point in the near future.
I was supposed to work Saturday but by 10am i had dignified myself by passing out on a customer in the midst of a very interesting discussion about a Labradors flea problem, so i spent the rest of the day in the staff room asleep on a rather large dog bed - i must say the bed was very comfortable and i think that i will be able to sell alot more of them now that i have had this first hand experience.
Im not sure what triggered this particular incident but as the sensation in my fingers and toes is barely functioning right now id say i will feel a bit perculier for another few weeks then i should be back to my sparkling self, fine motor skills and all, until the next time. Sigh, sometimes im more complicated than my son.
Speaking of, Jai has had a really good week, he is just so cute sometimes! He had a minor freak out over my mothers washing machine today but instead of screaming like a banshee he put his hands over his ears, pout on his little face and said "I dont like 'EEEEE' mummy, Nanna's washing-sheen is scary" It always amuses me the way he imitates the sounds that bother him - especially fireworks, thats a really cute impersonation, one which i would probably enjoy a whole lot more if the poor kid didnt look so frightened when he did it!
Lachie was driving me nuts today, he is into EVERYTHING and if he cant reach it he finds a chair and pushes it around with him to reach what he wants. After a brief discussion with Holger about even MORE child safety locks i am starting to think i should just lock him in his room in a straight jacket to save money.
The weather is warmer and im starting to come out of hibernation, my resolve to get fit yesterday started with a coffee and ended with an entire packet of Tim Tams. I have two pairs of pants and one T shirt which fit me comfortably and dont make me look like im doing Kath & Kim impersonations. I DONT NEED CHOCOLATE!!!!!
Thursday, October 4, 2007
If Jaiden were a girl...
He would look like this!
LOL, i probably shouldnt steal peoples photos from the internet but i was perusing a German WS site ( finding info for MIL to understand better)and came across this little girl who reminds me of Jaiden!
LOL, i probably shouldnt steal peoples photos from the internet but i was perusing a German WS site ( finding info for MIL to understand better)and came across this little girl who reminds me of Jaiden!
Wednesday, October 3, 2007
Just say hello
I have been thinking of what to write about Downs Syndrome for '31 for 21' and i must admit there is very little i know about the Syndrome, I am learning little bits from Michelle and have met more and more kids with DS lately - I think having Jaiden has opened up my eyes to people with disabilities more in general, i remeber a time when i would walk stiffly passed a smiling disabled child who would say 'hello, how are you?' to me feeling unsure what to say. I am very ashamed of that 'closed minded me'and deeply regret not taking 2 seconds out of my precious day to say "well thank you, how are you?" I am pleased to say i feel completly comfortable talking to any disabled person now and i hate watching the ignorent ones walking stiffly passed.
I was at a friends birthday party recently and met one of her relatives i had heard was in hospital with cardiac problems, she had mentioned him before in passing a few times but had never said how serious the heart problems were or that he in fact had Downs Syndrome. I had a great chat to him he is a lovely boy, well a man really, he is turning 18 in November and VERY excited about it! He was telling me that he was a bit sad because all his brothers and sisters were married now and he wasnt, but he does have a girlfriend he sees quite a bit and he wants to marry her someday :)
After a chat with his parents i found out he had only recently come out of hospital after having a valve in his heart replaced and that he was expected to have ongoing complications and will be lucky to see his 25th Birthday. I had heard that DS could cause Cardiac problems but i was unaware of the frequency and seriousness of this.
* On a different note, Some great news! My MIL is home again and feeling much better, they have no idea what caused the problem but a batch of scans and tests reveiled no Pnemonia and no Clot (THANK GOODNESS!)so at this point she just has to take it easy at home and see what happens.
I was at a friends birthday party recently and met one of her relatives i had heard was in hospital with cardiac problems, she had mentioned him before in passing a few times but had never said how serious the heart problems were or that he in fact had Downs Syndrome. I had a great chat to him he is a lovely boy, well a man really, he is turning 18 in November and VERY excited about it! He was telling me that he was a bit sad because all his brothers and sisters were married now and he wasnt, but he does have a girlfriend he sees quite a bit and he wants to marry her someday :)
After a chat with his parents i found out he had only recently come out of hospital after having a valve in his heart replaced and that he was expected to have ongoing complications and will be lucky to see his 25th Birthday. I had heard that DS could cause Cardiac problems but i was unaware of the frequency and seriousness of this.
* On a different note, Some great news! My MIL is home again and feeling much better, they have no idea what caused the problem but a batch of scans and tests reveiled no Pnemonia and no Clot (THANK GOODNESS!)so at this point she just has to take it easy at home and see what happens.
Tuesday, October 2, 2007
31 for 21
This October is Downs Syndrome Awareness month and i read on Michelles blog about the 31 (days in Oct) for 21 (Trisomy 21 aka Downs Syndrome) idea.
So basically every day this month we each will blog a post and try to make a part of it relevent to raising awareness of Downs Syndrome.
I will try my best to honour this!
Here is a link to the lovely Michelle's Blog about her beautiful daughter Kayla
Big Blueberry Eyes/
So basically every day this month we each will blog a post and try to make a part of it relevent to raising awareness of Downs Syndrome.
I will try my best to honour this!
Here is a link to the lovely Michelle's Blog about her beautiful daughter Kayla
Big Blueberry Eyes/
Monday, October 1, 2007
Reading the blogs this morning has gotton me thinking, Nancy spoke of the grief associated with old toys and baby clothes that brings back awful memories of infancy and the sense of Loss.
I was thinking that i dont really hold any value to the toys or clothes themselves, i figure this must be because these were not Jaidens to begin with, they were Liams and were passed on to Jaiden then to Lachie so they dont hold specific memories of any one child.
I suddenly realised that i am starting to resent Lachlan. This makes me feel so awful, my beautiful baby boy who is developing perfectly and now speaking so many words, with a gorgeous smile and i can only look at him with sadness. I love him, of course i do but i just cant get excited over his milestones the way i should.
Everyone gets so excited when he uses several words together and demonstrates that he has perfect understanding of everything going on around him, they clap and cheer and all i want to do is cry. Its eating me up that oneday he will casually pass Jaiden cognitivly without even blinking. I try and think, hey he hasnt got a diagnosis at the moment anyway, maybe the light is going to switch on, i will wake up tomorrow morning and everything will be 'normal'.
I also feel guilty for wanting 'normal', if all was 'normal' i would never have had the fulfilling experience of 'meeting'all of these wonderful people in the blogging community, im in some ways so glad that i have had this oppertunity, my eyes are so wide open to the world now. Rollercoaster.
In another note, my Mother in Law had a hip replacement last week and all was going swimmingly, she was discharged from hospital on Saturday and looking good except for some excessive swelling in her leg - they sent her home with blood thinner injections to prevent clots, but she got admitted back to Hospital last night when she woke up and couldnt breathe - All i know at this stage is they are worried she may have a clot and that it or part of it has gone to her lung, or of pnemonia. So fingers crossed it will be the latter and nothing a good dose of antibiotics wont fix.
I was thinking that i dont really hold any value to the toys or clothes themselves, i figure this must be because these were not Jaidens to begin with, they were Liams and were passed on to Jaiden then to Lachie so they dont hold specific memories of any one child.
I suddenly realised that i am starting to resent Lachlan. This makes me feel so awful, my beautiful baby boy who is developing perfectly and now speaking so many words, with a gorgeous smile and i can only look at him with sadness. I love him, of course i do but i just cant get excited over his milestones the way i should.
Everyone gets so excited when he uses several words together and demonstrates that he has perfect understanding of everything going on around him, they clap and cheer and all i want to do is cry. Its eating me up that oneday he will casually pass Jaiden cognitivly without even blinking. I try and think, hey he hasnt got a diagnosis at the moment anyway, maybe the light is going to switch on, i will wake up tomorrow morning and everything will be 'normal'.
I also feel guilty for wanting 'normal', if all was 'normal' i would never have had the fulfilling experience of 'meeting'all of these wonderful people in the blogging community, im in some ways so glad that i have had this oppertunity, my eyes are so wide open to the world now. Rollercoaster.
In another note, my Mother in Law had a hip replacement last week and all was going swimmingly, she was discharged from hospital on Saturday and looking good except for some excessive swelling in her leg - they sent her home with blood thinner injections to prevent clots, but she got admitted back to Hospital last night when she woke up and couldnt breathe - All i know at this stage is they are worried she may have a clot and that it or part of it has gone to her lung, or of pnemonia. So fingers crossed it will be the latter and nothing a good dose of antibiotics wont fix.
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