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i have a 13mth ds with downs any other parents i can speak to who are the same pls

(25 Posts)
disneystar1 Wed 12-Aug-09 13:22:11

i guess im feeling a bit low right now my son operation is looming its "the big one" he has crouzons and downs and heart disease and a cleft palate and numerous other problems, but hes my beautiful son, id really like to talk to parents of children with ds, i guess im worried about so much right now, but other ppls reaction sometimes hurts me like the question "oh will he ever do normal things then" ??
his condition with his brain/skull means hes terminal and only this next op can save him. i put on a brave face but just lately i keep crying he so so georgeous i cant bear the fact that 1 i am taking him there for the surgeons to do this, and i may lose him, i need coping tips please, were going away next week as in the docs words to make memories....sad

peanut08 Wed 12-Aug-09 14:08:47

Hello Disneystar,
I can't begin to imagine how you must be feeling right now sad I have a gorgeous DS almost 1 who has down's and is everything to me but were lucky in that so far we have only had to deal with corrective heart surgery for AVSD at 4 months and that was hard enough.
As far as other people go I like to think most are just curious and mean well although there are some who are just plain ignorantangry I try to rise above insensitive comments or at least try to educate them and if they have a problem it's their's not mine.
I don't know much about the other conditions your mentioned but I just wanted to say I hope everything does go well and you have special time away with your gorgeous LO.

fizzyanddizzy Wed 12-Aug-09 20:48:46

Hello Disneystar

I have a 10 month old ds with down's who is also rather lovely. I too find the staring and the 'well meaning' comments difficult and am still trying to work out a way to deal with them. I agree with peanut though - it is most definately their problem!

I am so sorry you are going through such a difficult time - what support are you getting on a day to day basis and to get you through the operation?

disneystar1 Wed 12-Aug-09 21:50:52

hello to you both well im not getting any support day to day or when the operation takes place, i guess its my own fault really as when we talk to the doctors im like im ok i know whats happening i can deal with it....but i say it as i dont want to talk about it as im afraid il fall down in this big pit of despair and kind of drown and if i cry i will never stop....i hope you know what i mean, we have a lady who has spoke to us for approx 2 hours apparantly she has to before his op and we have to look at pictures of what he will look like after, we know he wont be able to see for a while as they have to remove his eyes, even saying this makesmy heart palpitate and my eyes fill up with tears....i cant do this i dont know what to do.......sad

disneystar1 Wed 12-Aug-09 21:58:04

im sorry i should have finished they do put his eyes back in after fixing the problem its just both is eyes are in the way.....he wont see as his entire face swells up for quite a while, he will be in intensive care for up to a week, im going of course i have 3 other boys and my dh and we are all going,

no one can lok after my boys we have no family at all, so we all have to go they are gining us a ronald mcdonald room which is good and theres a playroom for the boys, i have though if going alone but how will i cope by myself? when things are so tough if hes in pain i need my dh to swap with me then i thought i could spend some happy time with my other small boys.....we could pray together as well, we all believe in this. i pray for him to spare my son, id trade places if i could.

eternalmother Wed 12-Aug-09 22:02:15

I have not had an experience like yours but just want to say that you are doing what you have to do and have to just take each minute as it comes, dig deep, you will cope and be stronger for it. Our children are sooo sooo special. Just focus on your family and be kind to each otherXX Big hugsXX

disneystar1 Wed 12-Aug-09 22:12:02

thank you eternalmother, each minute is right i guess.....oh my word yes they are special my children are my life everything we do is centred on our family, i tell them i love them so many times a day and they to me always running up to me or just saying mum , i love you you know, just wonderful.

devientenigma Wed 12-Aug-09 22:15:34

Hi disneystar1,
I have an 8 year old with down syndrome among lots of other conditions.
He has been through heart surgery twice and will have to encounter more.
I would not be worried about other people and their comments at the moment.
As my son has probs with his lungs and has recurent double pneumonia lasting longer each time he is also classed as terminal. It is hard to seeyour children go through an op (mines just had to have 12 teeth out and even then it was a major worry). I'm sorry I don't have any coping mechanisms for you but do know you will when it happens.
As for when will he do normal things, who cares he has enough to get through without worrying about that. Hope all goes well and your week away is extra special. HTH.

peanut08 Wed 12-Aug-09 22:20:04

Dear Disneystar huge ((((((((hugs)))))) to you and your darling DS. You are right in needing your family around you I know I would have gone to pieces if DH wasn't there with me during DS op.
My own experience was different as the op, although open heart surgery was straight forward and low risk but I couldn't shake the feeling as they wheeled him away that I wouldn't see him again and cried like never before.
All we can do is put our trust in the surgeons and those caring for them and gain strength from your DC, DH and your faith.
It is truely amazing how as parents we do manage to cope when are children are in need and when the time comes instincts kick in and we do find the strength somehow.

disneystar1 Wed 12-Aug-09 22:30:09

thats how i feel like im going to react when samuel goes into theatre, the operation is approx 10+ hours, so including the pre med and then he will go straight into picu its a long time to be apart, they said i can pop in when its over but its unwise and for me to get as much rest as i can as samuel is going to need me so much on approx day 5 when they remove his breathing tube and start to decrease the morphine to wake him up, but i guess your right once were there and its happening i cant stop it i just will have my way of dealing with it, we were told in may that he only had till xmas left without his operation, and hes started having fits now due to increased brain pressure, i knew he was ill before birth but i wanted to give him this chance of life, and apart from love its all i can give.
thank you all so much for answering youve no idea how much this means to me.

devientenigma Wed 12-Aug-09 22:30:33

Thankyou peanut you put it so much better than me.

peanut08 Wed 12-Aug-09 22:49:52

No probs, I'm finding the wine helps smile

devientenigma Wed 12-Aug-09 22:56:40

Although not as long my ds last heart op was 8 hours, to be honest with you I felt as if it all wasn't real, I wasn't there, I was floating which was maybe the way I coped with it. I think this feeling lasted as long as he was in intensive care at least.
Just to ley you know also my ds has seizures, although not for the same reason.
Take care. x

disneystar1 Wed 12-Aug-09 23:46:12

devientenigma thanks for sharing that, it makes me realise im not alone here

it makes you feel isolated doesnt it and alone but im also a bit wow ok these ladies have done it too....youve been there and survived, i guess im all stressed waiting for it to happen as well waiting for the dreaded letter to arrive but as my dh says that dreaded letter can save our sons life..

just lately hes has started mumbling he doesnt speak just babbles like mmmmmm but with his tongue always out, he wont make a sound unless its out,
weve been told he has to learn to keep it in, makes sense but hard to do....grin
do your dc, do this?
off to bed now hopefully get some needed sleep, also where did your children go which hospital
night ladies and thank you x

peanut08 Wed 12-Aug-09 23:58:42

Good night Disneystar you sound a lot more positive the waiting is the hardest part.

DS's tounge does pop out a bit when he's resting or sleeping but not when babbling.I have heard about exercises and I'm sure FizzyandDizzy had looked in to this for her DS recently maybe she could help.
We were at GOS for or DS's surgery they were fantastic.

disneystar1 Thu 13-Aug-09 09:34:24

yes a bit more positive knowing im not alone and youve all been there so youve come out the otherside so to speak....

fizzyanddizzy Fri 14-Aug-09 22:28:38

Hello Disneystar
How have you been doing? have been thinking about you and willing you on.

It sounds like your ds is making some great sounds - my ds is usually very quiet and then every now and then will have a chattery moment which is lovely.

There is a way of supporting children with ds to get good oral motor control and there is a website all about it called talk tools. Hopefully your speech and language therapist should know about it and be able to work with your ds on it. But do you know what? he and you have enough to be going on with at the moment and I wouldn't worry about it right now or give it another thought. Get yourselves through the next step first - there is plenty of time to help him work out how to get chatting.

I think you are going such a frightening, difficult time and from experience, I think all you can do is stay in the moment - looking ahead is just too hard so just enjoy each moment with your lovely boys. x

disneystar1 Fri 14-Aug-09 23:06:38

yes fizzy that is very true i cant look to the future right now we have been enjoying some good days here,
thank you for thinking about me its actualy quite nice to hear that.

samuel makes babbling mmmmmm sounds whilst dribbling everywhere......grin

hes got very scared of strangers at the moment and especially nurses and doctors he screams terrible if they come near him, especialy if they wear the stripey uniform.

hows your ds doing?

fizzyanddizzy Fri 14-Aug-09 23:18:40

oh the poor little thing. My oldest had a lot of hospital input from when he was a baby and went through (a v long phase) of being terrified of hospitals and doctors - we had input from a play therapist at the hospital who worked with him. Is there one at the hospital who knows Samuel - would be good if they could approach things in a way that helps him.

the mmmm sounds sound great and v clever of him! my ds is a litle bit younger than yours and hasn't got to the mmm sound yet - he thinks that making the blowing raspberries sound is v funny though, which means we all get soaked! grin

disneystar1 Sat 15-Aug-09 08:48:52

awww samuel does the raspberry blowing thing too, how old is your ds again, was it 10 mths?? i can imagine you do get soaked....grin
at least its a common thing for the nurse kind of phobia i guess it just passes.

samuel is a bit older in approx 1 week and a few days he will be 14 mths....

we have been signing with him since 3 mths and this week he did 2 signs out of the blue all gone and food i nearly cried im such a softie but they do the things all of a sudden dont they and take you by suprise....

hes very clingy to me right now and ultra sensitive but they go through the oddest phases .

are you on facebook by any chance?

devientenigma Sat 15-Aug-09 09:06:21

Hope you are all well. Just thought I would add something from the tongue point of view. If you tap the end it automatically goes in, i do this while saying tongue away, now 8 year later I have a son who I just say tongue away and in it goes. He looks so much better than my neice who does still sit with her's out. However when he's ill or breathless I allow him as he needs too but on a good day can't see why he can't keep it away. Gosh I sound so harsh.
As for speaking and making sounds he was very late, at least 2 before he was making sounds. Although my son is at the severe end ofthe scale, roughly averaging around 2 year old and he's nearly 9.
As for the stripes I would be keeping a record of this in a diary. My ds has a big aversion to stripes as well as many more as part of his sensory processing disorder. Tothe point where he won't wear them.
HTH, take care x

disneystar1 Sat 15-Aug-09 12:38:47

thank you devientenigma and interesting about the stripes as well,

no you dont sound harsh to me in fact you sound very clued up and totaly in tune with your son.... grin

quick post here as Samuels asleep and as its saturday my dh is home (he works away from mon - fri long distance lorry driver) so im taking danny 5 to matalan to get the school uniforms....

hope you are both well and the weather is good wherever you are.

LilyOfTheMountain Sat 15-Aug-09 12:55:14


I don't have a child with DS, I do have 4 boys, one with the same name and two with sn- as well as no support system so can empathise with those aspects if not the actual DX.

I just wanted to say that tehre is a support system off board where you might find it easier to post (as people can sadly pick up IDs online). If you want to be included there is a thread in SN about TTR (time to rant)

I wish you luck. I can't even start to imagine your fear and I think you are one strong lady to hold together so well, and your ds sounds perfect.

2shoes Sat 15-Aug-09 16:23:08

if you want to join TTR, email me at

disneystar1 Mon 17-Aug-09 19:05:18

yes thank you i will mail you just been ultra busy here
we got the appt through today 3rd november....i admit i had a cry when i opened it, knew it was coming but still shed a tear...

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