This week I feel as if I'm waiting for the final straw, the straw that broke the camels back.
We are so busy. Then theres Nates birthday on Sunday, and all the memories that come with it. I feel an emotional wreck, I'm a balloon about to pop, a donkey on the edge, and there's nothing I can do about it, and no one can help.
Little things are getting to me, I'm peed off that for some reason my home phone has been recording messages to our line supplier and not the phone itself- mailbox full of messages, some important! The car park on our street is going to charge which means people will dump their cars outside my house, brilliant.
Big appointments. Took Nate off oxygen yesterday for about 20 mins at 17.30. It didn't go well. His sats sat between 84-87 then became naughtier as he feel asleep. It has been pointed out that mornings are best so we will try on Friday morning. Fingers crossed. He had his kidney ultrasound today and get the results tomorrow.Nate also has 2 v small round lumps above his belly button that can only be seen when screaming. So I'm thinking epigastric hernia ( google is evil at times) :(
Everything would be easier to deal with/ fit in without work. In addition to the above we have physio OT and SALT appointments. I have counselling, thea has gymnastics, I have places to ring, Nate has developmental groups to attend. And everything has to be fitted into the days I don't work. I'm worn out. Emotionally and physically drained. I've had a headache for 2 days that will not shift and I keep doing ridiculous things like making Nates bottles up wrong. We have no money, the house isn't getting much interest...
I COULD SCREAM!
So some good news please. That would be grand. Otherwise tomorrow
could be the final straw...
the kids
Wednesday, 22 June 2011
Wednesday, 15 June 2011
The dangers of labels
I think about this a great deal. Who does It help if Nate gets a diagnosis. He is already labelled "special needs/ additional needs" " oxygen dependent" "home ventilated" these are ok labels, factual and practical. But my worry has always been that you grow into a label. That expectations of a labelled person change, usually lower and the label becomes an excuse/ cop out for not reacting to problems. Teachers notoriously have low expectations of children who are labelled trouble makers, I try to do the opposite but sometimes they do " live up to their name"
misconceptions are rife, why bother pushing the autistic child who has behaviour issues for example. The "slut" will never escape the stigma and be judged forever. So with these points in mind I sometimes don't mind not having a label/ diagnosis for Nate.
Not having a diagnosis means we live in limbo not knowing what the future holds but it also means that for the present we escape comments like " he will never..." " thats because of..." my worry is he will cease to be an individual and become confined by the walls of the syndrome. Will expectations lower? Will physio be considered pointless? Will opinions change? This is all brought on by the opinions of the drs when he had rsv before Xmas. If he had schinzel- Gideon disease they did not want to take extreme measures to save his life. Then to a lesser degree is what my friend goes through everyday with her gorgeous little boy. She is so incredibly frustrated that no one seems to see past the fact he has downs syndrome.
Professionals use his syndrome as an explanation for absolutely everything. Heaven forbid
anything should be to do with the fact he's a 2 year old mischief maker with his own personality. Or just that he's a child. And we will not mention the person who came over to
her the other day to tell he it was " terrible what had happened to her son" !
This is a rambley rant really. But just think about your expectations sometimes and why you have them. Don't judge what you don't understand and if all else fails keep an open mind
misconceptions are rife, why bother pushing the autistic child who has behaviour issues for example. The "slut" will never escape the stigma and be judged forever. So with these points in mind I sometimes don't mind not having a label/ diagnosis for Nate.
Not having a diagnosis means we live in limbo not knowing what the future holds but it also means that for the present we escape comments like " he will never..." " thats because of..." my worry is he will cease to be an individual and become confined by the walls of the syndrome. Will expectations lower? Will physio be considered pointless? Will opinions change? This is all brought on by the opinions of the drs when he had rsv before Xmas. If he had schinzel- Gideon disease they did not want to take extreme measures to save his life. Then to a lesser degree is what my friend goes through everyday with her gorgeous little boy. She is so incredibly frustrated that no one seems to see past the fact he has downs syndrome.
Professionals use his syndrome as an explanation for absolutely everything. Heaven forbid
anything should be to do with the fact he's a 2 year old mischief maker with his own personality. Or just that he's a child. And we will not mention the person who came over to
her the other day to tell he it was " terrible what had happened to her son" !
This is a rambley rant really. But just think about your expectations sometimes and why you have them. Don't judge what you don't understand and if all else fails keep an open mind
Tuesday, 14 June 2011
Tough week
Well I haven't blogged in a while for a few reasons really.
Work. Well work is busy. Things are difficult. I'm not entirely sure how long I can keep this level of busyness up for.
My sister. She's been really poorly. She will read this so sis I love you and think you have been incredibly brave :-) things are very positive now. I won't go into detail but hope she will add to her blog what's been going on in her life. It helps!
Then there's Nate. He needs an op in his mouth to remove a rannula ( cyst/blocked gland)so although it's not major surgery I'm scared of the risks of having a GA. The feeding clinic appointment felt like zoo keepers watching feeding time. Nate was uncooperative at best! They want the lump removed as it may be affecting his feeding. And said his weight is ok at the minute but they may need to take action in the future! It was all a bit judgemental based on one meeting if I'm honest. Todays appointment at the ventilation clinic was much more positive- his consultant is really pleased with his breathing, ecstatic he had rsv and didn't need admission, and can't believe the change in him! This dr we have seen since Nate was 5 days old and he's been with us through done very tough times so to hear him say that was amazing! His oxygen goes down to 0.1 tomorrow once he's settled on that he will be taken off oxygen completely for short periods !!! I'm terrified and happy at the same time! We had our first visit to Theas new school . She starts reception in September. The school seems impressive but a bit full on! I hope she settles ok!
So yes very very busy. Very emotional and very tired!
Work. Well work is busy. Things are difficult. I'm not entirely sure how long I can keep this level of busyness up for.
My sister. She's been really poorly. She will read this so sis I love you and think you have been incredibly brave :-) things are very positive now. I won't go into detail but hope she will add to her blog what's been going on in her life. It helps!
Then there's Nate. He needs an op in his mouth to remove a rannula ( cyst/blocked gland)so although it's not major surgery I'm scared of the risks of having a GA. The feeding clinic appointment felt like zoo keepers watching feeding time. Nate was uncooperative at best! They want the lump removed as it may be affecting his feeding. And said his weight is ok at the minute but they may need to take action in the future! It was all a bit judgemental based on one meeting if I'm honest. Todays appointment at the ventilation clinic was much more positive- his consultant is really pleased with his breathing, ecstatic he had rsv and didn't need admission, and can't believe the change in him! This dr we have seen since Nate was 5 days old and he's been with us through done very tough times so to hear him say that was amazing! His oxygen goes down to 0.1 tomorrow once he's settled on that he will be taken off oxygen completely for short periods !!! I'm terrified and happy at the same time! We had our first visit to Theas new school . She starts reception in September. The school seems impressive but a bit full on! I hope she settles ok!
So yes very very busy. Very emotional and very tired!
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