This is what my blog was really for, charting as a parent of a special kid, the kind of things that when you're in them, you don't want to talk about because they're hard and you don't want to dwell on the negative. And when you're out of them you want to forget because they were hard, exhausting and you don't want to dwell on the negative.
However I think it's really important that this stuff is here to be read, to advise and support other people going through it, and to help me to see how much we achieve when it all feels too difficult, as it inevitably will be in what I think will be a long road to an as yet uncertain result.
So, my little boy with his genetic disorder. My little boy who does so well but who may have that held against him. My ability and indeed determination to look ahead to when he starts school in September 2011 and whether/how/if we can or should get a statement of special needs.
So begins the journey.
Come along for the ride, I may need some cheerleaders
Sunday, 21 March 2010
Wednesday, 17 March 2010
when to stop talking
I went to an industry "do" last night for the first time in years.
It was kind of fun to get dressed up and be glam Sara and it was actually wonderful to see old friends from places that I used to work.
(Just to meandre for a second, I've bumped into people recently who I haven't seen for a while all of whom have been telling me with great shock and wonder how much weight I've lost. I got lots more comments like that last night too. As an exercise challenged person who hates dieting or weighing herself, or indeed looking in the mirror very much, I suppose I have to take their word for it. However, rather than take the compliment, I'm thinking that clearly I used to be a huge fat knacker, or that people just have an image in their heads of me as a short fat person. I add the short because people are often surprised at my height and one super lovely friend last week was quite shocked at how tall (or not short) I was after a gap of a year or so since we met.)
Anyway, at said "do", the very last conversation I had was with a lovely producer who'd clearly had a very bad day. He proceeded to rant quite animatedly at me using many unbloggable words to describe the TV head honchos who'd just turned down his amazing project. Feeling bad that he was letting these people make him so angry, I in turn spouted positive pointless platitudes to try and disperse the bile, but only really served to annoy him. I then did something I don't usually do, which was to cite my little magic man in my attempt to give him some perspective on the general bullshit of TV and how it's really not worth it.
It didn't work, in fact as we both laughed, trapped in this crazy funny and intense exchange, he ended by saying he wanted to dig a hole and put me in it.
I've never had that said to me before and although I should have been offended, I actually found it quite funny.
So on my way to work I was thinking about writing this post and deciding that I really need to learn when to stop talking, (like I should have to the poor taxi driver on the way home who practically heard my life story from Park Lane to Finchley).
However I've just had call from the nice producer, who'd felt so bad about his rant on waking this morning, that he found my mobile number so he could apologise for being so very grumpy and taking a joke too far.
So maybe there is room for a cock-eyed optimist in a room full of TV cocks.
But I do need to learn to shush a bit too.
And really, I must dig out some photos to see if they're right and I was as fat as they all remember
It was kind of fun to get dressed up and be glam Sara and it was actually wonderful to see old friends from places that I used to work.
(Just to meandre for a second, I've bumped into people recently who I haven't seen for a while all of whom have been telling me with great shock and wonder how much weight I've lost. I got lots more comments like that last night too. As an exercise challenged person who hates dieting or weighing herself, or indeed looking in the mirror very much, I suppose I have to take their word for it. However, rather than take the compliment, I'm thinking that clearly I used to be a huge fat knacker, or that people just have an image in their heads of me as a short fat person. I add the short because people are often surprised at my height and one super lovely friend last week was quite shocked at how tall (or not short) I was after a gap of a year or so since we met.)
Anyway, at said "do", the very last conversation I had was with a lovely producer who'd clearly had a very bad day. He proceeded to rant quite animatedly at me using many unbloggable words to describe the TV head honchos who'd just turned down his amazing project. Feeling bad that he was letting these people make him so angry, I in turn spouted positive pointless platitudes to try and disperse the bile, but only really served to annoy him. I then did something I don't usually do, which was to cite my little magic man in my attempt to give him some perspective on the general bullshit of TV and how it's really not worth it.
It didn't work, in fact as we both laughed, trapped in this crazy funny and intense exchange, he ended by saying he wanted to dig a hole and put me in it.
I've never had that said to me before and although I should have been offended, I actually found it quite funny.
So on my way to work I was thinking about writing this post and deciding that I really need to learn when to stop talking, (like I should have to the poor taxi driver on the way home who practically heard my life story from Park Lane to Finchley).
However I've just had call from the nice producer, who'd felt so bad about his rant on waking this morning, that he found my mobile number so he could apologise for being so very grumpy and taking a joke too far.
So maybe there is room for a cock-eyed optimist in a room full of TV cocks.
But I do need to learn to shush a bit too.
And really, I must dig out some photos to see if they're right and I was as fat as they all remember
Tuesday, 16 March 2010
Deceptively simple means often not simple at all
I had really been enjoying the apparent simplicity of L's latest operation.
The replacement grommets and full removal of remaining adenoids went just as it would for a typical child, which meant I could relax and let go of my anxiety about things being as complicated as first time round.
So yesterday we went to see our wonderful surgeon for the follow up (with tingling bells about L saying the right ear was scratchy) only to find that the bleeding from said right ear the day after his op, that I was concerned about but took as normal, might well have been the grommet deciding to evacuate.
Dr W couldn't see it due to dried blood and was a little worried, so we now go into another week of drops, another look next Monday, which means another few hours of planning logistics and how to get him there/take him home/do my job, and if the grommet has gone, thoughts about another op.
I try to be all positive and it isn't a big deal in the grand scheme of things, but it would be really nice to have something go super smoothly all the way through.
I'll write down all the things that are helping me to smile this week just to stop me getting all moody:
Matrimonial harmony resumed and D's excitement about our upcoming weekend away is infectious.
Not yet feeling sick about leaving my babies behind for said weekend, helped by their wonderful Aunt C looking forward to having them for the first time.
Three days and counting of blue skies and frosty sunshine makes me feel like we're on the borders of Spring.
Memories of a wonderful family-filled mother's day where my both kids but especially big boy was so kind and sweet my heart popped a little
Finally, something lightened in my head so that I'm able to smile and laugh and move on from the dark thoughts when they threaten.
The replacement grommets and full removal of remaining adenoids went just as it would for a typical child, which meant I could relax and let go of my anxiety about things being as complicated as first time round.
So yesterday we went to see our wonderful surgeon for the follow up (with tingling bells about L saying the right ear was scratchy) only to find that the bleeding from said right ear the day after his op, that I was concerned about but took as normal, might well have been the grommet deciding to evacuate.
Dr W couldn't see it due to dried blood and was a little worried, so we now go into another week of drops, another look next Monday, which means another few hours of planning logistics and how to get him there/take him home/do my job, and if the grommet has gone, thoughts about another op.
I try to be all positive and it isn't a big deal in the grand scheme of things, but it would be really nice to have something go super smoothly all the way through.
I'll write down all the things that are helping me to smile this week just to stop me getting all moody:
Matrimonial harmony resumed and D's excitement about our upcoming weekend away is infectious.
Not yet feeling sick about leaving my babies behind for said weekend, helped by their wonderful Aunt C looking forward to having them for the first time.
Three days and counting of blue skies and frosty sunshine makes me feel like we're on the borders of Spring.
Memories of a wonderful family-filled mother's day where my both kids but especially big boy was so kind and sweet my heart popped a little
Finally, something lightened in my head so that I'm able to smile and laugh and move on from the dark thoughts when they threaten.
Friday, 12 March 2010
more observations on my strange
For the last two years I've been walking to work from Tottenham Court Road station. The final leg of the journey takes me down a little road where there's a Starbucks on the corner, and at what I now realise is the back door of that Starbucks they have a very rigorous cleaning regime that coincides with my walking past at around 845am.
Every day I walk along the pavement of Hollen Street and step into the road to avoid the very pungent bleach and water mix that collects outside the gate of that back entrance, and slowly dribbles its way to collect on the pavement outside.
Every day I sidestep that dettolly-smelling mix, and only this week have I started to wonder why I won't walk through it.
And I think I've found this reason,.
Call it my youth group background, or just my general education as a girl aware of her heritage, but I'm just not comfortable walking through disinfectant.
I have often thought over the years about the "what ifs".
What if my great grandfather Harris had not come over from Eastern Galicia and found his way to Liverpool and then Manchester. Or what if my great great grandfather on my father's side had not found his way to London. What if I had been born then rather than now?
I might not have had any choice but to walk through that disinfectant and through to my destiny.
So each morning in sleepy Soho I do have a choice
And without me being aware of it, I've been exercising that choice everyday.
Because I can
Every day I walk along the pavement of Hollen Street and step into the road to avoid the very pungent bleach and water mix that collects outside the gate of that back entrance, and slowly dribbles its way to collect on the pavement outside.
Every day I sidestep that dettolly-smelling mix, and only this week have I started to wonder why I won't walk through it.
And I think I've found this reason,.
Call it my youth group background, or just my general education as a girl aware of her heritage, but I'm just not comfortable walking through disinfectant.
I have often thought over the years about the "what ifs".
What if my great grandfather Harris had not come over from Eastern Galicia and found his way to Liverpool and then Manchester. Or what if my great great grandfather on my father's side had not found his way to London. What if I had been born then rather than now?
I might not have had any choice but to walk through that disinfectant and through to my destiny.
So each morning in sleepy Soho I do have a choice
And without me being aware of it, I've been exercising that choice everyday.
Because I can
Friday, 5 March 2010
down low
Still a bit lame at all this blogging stuff. I don't do it often enough, not that I have any followers so it's not really like I'm disappointing anyone. Still, I've decided to do it so I should try to stick at it.
I could be kind to myself and say it's because I have a full time job, do all the home stuff, have two kids and have at least one extra curricular appointment for the little one in between all the other stuff like trying to see friends, do exercise, relax, see husband, stare into space just a little....
I need some idea about posting etiquette. Or maybe I need a crystal ball to know where all of these words and thoughts and feelings will end up and how and/or if and/or when they may come back to bite me on the arse.
Like if I posted about how uneven the sharing of things are in my house these last few weeks that makes me feel so frustrated and used that I could actually burst.
Like if I posted about how I am struggling daily (sometimes hourly and minutely) to keep optimism and positive attitude towards my career.
Like if I splurted all the stuff that makes me frown in my down time.
Tonight I feel low. We had a little revisit to L's adenoids and grommets this week and I was very nervous about it, having had such troubles first time round back in November 2008. It went really smoothly, just like it would with a typical boy, and he's enjoying his quarantine just hanging out with his nanny and me a bit and having the toys to himself. I've been able to take big boy to school three times this week and it's been almost too gorgeous a start to my day. We've even had a paediatric assessment with a big pass from the nice doctor and a glimmer of hope that I might get closer to having someone across all the unanswered medical stuff.
But ask me when I last had a non-tense conversation with D, I couldn't tell you. Ask me when he last pulled his head out of his own stress to look around and think "hmm, what can I do for anyone else round here right now?" and I couldn't tell you.
Ask me why he's down there typing, and I'm up here and never the twain is meeting.
And I couldn't be bothered to tell you.
Sometimes, rightly or wrongly, it all just feels too hard.
I could be kind to myself and say it's because I have a full time job, do all the home stuff, have two kids and have at least one extra curricular appointment for the little one in between all the other stuff like trying to see friends, do exercise, relax, see husband, stare into space just a little....
I need some idea about posting etiquette. Or maybe I need a crystal ball to know where all of these words and thoughts and feelings will end up and how and/or if and/or when they may come back to bite me on the arse.
Like if I posted about how uneven the sharing of things are in my house these last few weeks that makes me feel so frustrated and used that I could actually burst.
Like if I posted about how I am struggling daily (sometimes hourly and minutely) to keep optimism and positive attitude towards my career.
Like if I splurted all the stuff that makes me frown in my down time.
Tonight I feel low. We had a little revisit to L's adenoids and grommets this week and I was very nervous about it, having had such troubles first time round back in November 2008. It went really smoothly, just like it would with a typical boy, and he's enjoying his quarantine just hanging out with his nanny and me a bit and having the toys to himself. I've been able to take big boy to school three times this week and it's been almost too gorgeous a start to my day. We've even had a paediatric assessment with a big pass from the nice doctor and a glimmer of hope that I might get closer to having someone across all the unanswered medical stuff.
But ask me when I last had a non-tense conversation with D, I couldn't tell you. Ask me when he last pulled his head out of his own stress to look around and think "hmm, what can I do for anyone else round here right now?" and I couldn't tell you.
Ask me why he's down there typing, and I'm up here and never the twain is meeting.
And I couldn't be bothered to tell you.
Sometimes, rightly or wrongly, it all just feels too hard.
Thursday, 11 February 2010
one in one out
We've been hospital-tastic in the last few weeks (as well as home alone during husband's 10 day business trip) and have new things in and new things out.
Strictly it's two in two out but that doesn't sound as good.
Speech therapy out - he's doing so well we really don't need to be there, never really did actually but because 99% of the kids with 18p- have issues I didn't want to leave it to chance.
Heart out - the pinhole that was found in Nov 08 has gone and the heart is gloriously clinically and physically normal. We don't have a reason for his getting blue lips and cold extremities, but still, a good result is a good result.
Hearing back in - today his hearing test showed a horribly blocked right grommet that needs either cleaning or replacing. So that's an operation, small and insignificant for some kids but because of airway concerns and low muscle tone, not so for him. We're rushing it through before the health insurance runs out (don't get me started!)
Most upsettingly
Kidneys in - I've been monitoring this for sometime since my witchy senses started tingling and I bought some dipstix. We've now had two lots of urine tested, one lot of blood tests and need to deliver more of the former to the hospital and wait for an outpatient appointment with a new paediatrician with knowledge of renal things.
Both D and I feel pretty crappy about this one, like it's not just going to go away like some of the other stuff. I'm in denial about what it could be, pushing it to the back of my mind and resisting too much research until we know more.
Accentuate the positive and all that.
wow, a pretty downbeat post. I've been quiet for so long because this is actually more positive than I've been able to be for sometime.
It'll take me a lot more practice at this to be able to be totally honest as I feel the things I feel.
Strictly it's two in two out but that doesn't sound as good.
Speech therapy out - he's doing so well we really don't need to be there, never really did actually but because 99% of the kids with 18p- have issues I didn't want to leave it to chance.
Heart out - the pinhole that was found in Nov 08 has gone and the heart is gloriously clinically and physically normal. We don't have a reason for his getting blue lips and cold extremities, but still, a good result is a good result.
Hearing back in - today his hearing test showed a horribly blocked right grommet that needs either cleaning or replacing. So that's an operation, small and insignificant for some kids but because of airway concerns and low muscle tone, not so for him. We're rushing it through before the health insurance runs out (don't get me started!)
Most upsettingly
Kidneys in - I've been monitoring this for sometime since my witchy senses started tingling and I bought some dipstix. We've now had two lots of urine tested, one lot of blood tests and need to deliver more of the former to the hospital and wait for an outpatient appointment with a new paediatrician with knowledge of renal things.
Both D and I feel pretty crappy about this one, like it's not just going to go away like some of the other stuff. I'm in denial about what it could be, pushing it to the back of my mind and resisting too much research until we know more.
Accentuate the positive and all that.
wow, a pretty downbeat post. I've been quiet for so long because this is actually more positive than I've been able to be for sometime.
It'll take me a lot more practice at this to be able to be totally honest as I feel the things I feel.
Health Insurance Sucks...
...
that really is the truth
the paperwork and bullshit
makes me kind of hit the roof
it really is a travesty
that we're so trapped in fear
so I'm trying not to play along
let's have a huge "hear hear"
that really is the truth
the paperwork and bullshit
makes me kind of hit the roof
it really is a travesty
that we're so trapped in fear
so I'm trying not to play along
let's have a huge "hear hear"
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