The week that changed my life forever.

Today the sun is shining and the sky has just a few fluffy clouds, just like it should be at the end of July.

A few clouds in my heart this week. Two special kids members had to say their final goodbyes to their children and it's heartbreaking. A friend posted on facebook that his niece had passed away too this week. Weeks like this make me want to hug my kids tight and never let go. It also makes me so grateful that R is healthy and her condition now isn't life threatening but behind those thoughts are the flashbacks to when she was a baby and we were at real risk of losing her.

It's not often these days that I'm taken back to the night I thought R would never grow up but for some reason this past week has meant it didn't just creep up on me, it leapt out and soundly slapped me around the face - very hard.

R was born a few days early, everything was expected to be normal but she had other ideas. I was lucky enough to be able to have a water birth but she was a long time in arriving. I went into labour on the Saturday and she took until the early hours of the Tuesday morning to finally put in an appearance. She wasn't in any hurry to come out then and the midwife had to break my waters as she was coming out with the bag intact!

When she was lifted out of the water she cried but silently. It was surreal, like watching a baby cry but with the sound turned off. Her skin was a bit pale and her lips had an orange tinge but otherwise she seemed ok. The midwife said it was possible she had caught a cold and lost her voice but they'd keep an eye on her. She was sleepy and didn't feed that well, I had to keep waking her up and she tired easily. Wednesday morning the midwife woke me about 8am to say she'd slept all night! What a good baby! A few hours later that had moved on to "we're a bit concerned so we're putting this thing on her toe to measure her oxygen levels". I'm so glad I had no experience of a pulse ox machine before or I'd have been so panicked that her levels never went above 85% even asleep.

After so long in labour I was like a zombie at that point. When the senior midwife said the would need to transfer her to special care in Lancaster and did I want to go with her I said "no, I think I'll go home". Not sure what I was thinking at that point, not sure I was capable of thinking anything much to be honest.

Wednesday afternoon saw us meeting with the ENT consultant in special care in Lancaster, I did change my mind and was transferred with her, who would put a camera down her throat to see if they could see what the problem was. An hour later he was back to say she had webbed vocal cords and that she would need to be transferred to a specialist centre, he couldn't say where as he'd need to find someone who knew about this very rare condition, but to be prepared to be transferred anywhere in the UK the next day. We were relieved to find out that evening that we'd be going to the children's hospital in Manchester the next morning and not down to London as we had feared.

Thursday morning saw me being rushed to a midwife for a discharge so I could go with her then a wait around for the team to go with us. Not sure why I wasn't alarmed when they said we couldn't leave without the consultant and an aneasthatist in case R needed a tracheotomy performing on the way if she struggled. I think by now my brain had just gone into survival mode and emotions were just gone. I guess I know what it means when people say they were numb with shock. I did think it was odd at that point that we'd arrived the previous day in hospital transport with a driver, paramedic and midwife with R in a baby seat and no monitoring yet here we were with her in a travel incubator, lots of wire and machines, a midwife, driver, two paramedics, ENT consultant, aneasthatist and me!

We arrived at the childrens hospital on the worst possible day. Out the front were press and tv vans and far as you could see. Police and security on the doors and no one allowed in without ID. I hadn't heard at that point but several children on the cancer ward had been given feed that was contaminated with a virus or a bacterial infection and died. Worse still, as we were taken into ICU with R the curtains in the next bed were drawn one of the kids from that ward was in there and had just died. There I sat in a daze with tearful family and staff going in and out of the curtains wondering if I was having a terrible nightmare.

Shortly after R was put into a cot/incubator that looked like something from a science fiction film we me the wonderful Mr R, ENT consultant and amazing man who is still R's main man to this day. He explained so much about what needed to be done and that R would have to stay in ICU until surgery on Monday. She would need lazer surgery to remove the webbing but until that was done, and afterwards at first, she was at risk of losing her airway altogether and could need emergency surgery at any time to keep her breathing.

Over the weekend family came and went. My then sister in law came in and saw her and ran straight back out in tears. Still in a state of shock I was puzzled and couldn't work out what had upset her! I'm surprised more people didn't do the same with all the wires, machines and the almost constant beeping from her machines and others.

ICU at that time had no parents accommodation so I was found a bed in a room on another ward and got used to being a resident parent over the weekend. About 6am on the Monday morning a nurse came to get me to give R a final feed before she had surgery later that day and told me she had had to be moved from ICU to make way for an emergency and was now the heart ward opposite. R didn't want to wake for a feed and after a few sucks and much moaning from the sleepy one I gave up and went for more sleep.

R was transferred to the ENT ward mid morning so another ward for me to get lost in! She had a cubicle shared with another baby and a nurse between then so we just hung around there until she went to theatre after lunch. Mr R had been to talk to us again and I was happy that things seemed to be happening and it would all be straightforward! I think because the staff were so fantastic and explaining everything they were doing and why I felt at ease and not worried. Sometimes ignorance really is bliss!

A few hours later the worry did begin. Mr R came to see us after surgery to say that the webbing had been far more extensive than they thought and much thicker. He said if he'd known beforehand he wouldn't have used the lazer as he expected a lot of swelling and it was quite likely R would need a tracheotomy and they'd see how she went over night. She came back to the ward in an incubator with tubes and machines and wires again but now on oxygen and nebulizer to keep the swelling at bay. She was then pretty much watched over full time by a nurse while I sat in the corner dazed again.

Every couple of hours the nurse had to go off with another nurse and get adrenalin to go in the nebulizer to keep R breathing. That was fine until the night shift started! A full ward, several kids having had surgery that day and just three nurses and one auxilliary. About 11pm R's breathing got worse again so the nurse left to go and get her next dose. I'll remember the next few minutes for the rest of my life. R was laid there looking at me breathing hard when suddenly her eyes fixed on mind and all went quiet for a few seconds. Next minute alarms went off and she started to turn blue - that has to be the most terrifying moment of my life.

No one came so I went out of the cubicle and saw the other two staff down the bottom of the ward. Did I yell? Did I call out? No, I dashed down the ward as quietly as I could so I didn't wake the other kids!! I always thought I was calm and coped with emergencies but for some reason I wasn't registering that my baby was blue and not breathing, all I could think of was "don't wake the patients"!

Luckily they ran in and the other nurse came back and with a lot of help she started to breathe again. I actually don't remember much of the next hour apart from people going in and out and me being sat in the corner terrified. On duty docs came and went and by 12 they were waiting for a space in ICU again, this time R was the one going in and someone else was having to make way for her.

1am the nurse grabbed a pram from the corridor and I stood at the end of the ward with the door open ready. We made a mad dash through the hospital with R in the pram to ICU, me opening doors as quick as I could to get her there. Another moment that has always stuck in my head was Mr R following quickly behind us having clearly been called from his bed, tie wonky and hair all over the place.

3am R is in surgery having a tube inserted to put her on a ventilator.

and in comes E and S is being a pain so I'm logging off for now.

Well done if you got this far, I might get back later!

A waffle

I had a look back at my old posts and realised it's been over 2 years since I started this blog! There are a couple of fairly large gaps but I didn't think I'd been on here that long or blogged that much!

It started as somewhere to put my thoughts, not sure what happened along the way but it sort of changed into a more newsy type thing.

J has been away since Friday at The Rally Show down near Oxford so I suppose I've had more time to myself this weekend and so my brain has had free rein to think a lot. Not always a good thing when things aren't right but sometimes you need a bit of space to just think and ponder a bit.

I think todays blogging has come about by me having what I'd call an "approaching 40" phase. In 6 months there is a special date - 11.11.11. It also happens to be my 40th birthday and it's set me off thinking at lot lately about what I've done so far with my life and where I'm going still.

For the first time I feel like I'm a bit of a grown up now, the quiet little mouse evolved over the past few years, when you have a child with special needs you learn to develop a thick skin and learn how to make your voice heard. Takes a lot of practise but I think I've got the hang of it now. When R was little I always believed what I was told "we don't supply that" "no, she can't have that" etc etc. What I now know is that's just the starting point of negotiations or the point at which I start politely to disagree then start to stamp my feet until things are sorted. Education thought they could tell me what R could and couldn't have, they found out they were mistaken and nearly found themselves at a tribunal before they agreed with me and named R's current school on her statement as the most suitable place for her.

For the first time in my life I feel comfortable being me. I know I am overweight but I'm tackling that slowly and have joined a gym as well as eating less. With not having a car anymore I'm having to walk more too. I am trying to pay more attention to myself, using face cream and taking more pride in my appearance but I have never been, nor will I ever be, a domestic goddess who never leave the house without full make up. Make up is reserved for special occassions because I just don't feel like me if I'm hiding behind make up.

I have spent the last 19 years being wife and mum, it's a job I love and even though it's a real 24/7 job I wouldn't swap it for the world. I tried to work out what I do on the average day and came to the conclusion that I don't have an 'average'! Every day is different and I'm happy with that.

I also realised just how much all our lives are affected by R and her problems and issues. Every day we have things that come up and I'm so used to it now it's our normal. We're lucky that she's it and healthy generally with no long term health problems but sometimes the other issues can be overwhelming and such hard going I want to cry.

I spent some time earlier wondering what I do with my time because I never have enough time to fit in everything I want/need to do. I worked out that some weeks I am spending up to 30 hours doing things for others outside the family as a volunteer in different places, that'll explain a fair bit of it!

I help run 3 local Freegle groups, help out when I'm needed at the family drop in centre, I am parent representative on the local Early Support team, I am on the Learning to Change Steering Group for Cumbria as a parent, I am on the committee for R's school Family and Friends (PTA) as well as the wife and mother role and anything that comes up from that.

I sometimes think I should stop doing some of those things but I don't want to. I did drop the secretary roles from the drop in and family and friends which did help but everything I do also benefits my family and the families of others like us.

Well, waffle has to end here because the little dude is pestering me for the pc and I did say he could use it after me.

Friends

We've had quite a run of catching up with friends just lately. Last week we were at Kielder with 7 other families that we know via special kids in the uk and had a fantastic time. Some people we see a lot more often than others but it's nice to have some time together all with our own kind of 'normal'.

I know that one friend who's blog is on my list on the right 'witty name to follow' has a few photos up of the week. I need to get off my arse and find my camera lead and upload my photos soon!

I often feel that we don't sit comfortably within a box as a 'normal' family with the differences in the kids ages and R's disabilities. Then again we don't fit that well with some families who have kids with physical disabilities, but we do have a far better understanding of an alternative 'normal' with them than people who have average teenagers. I guess we all have our own definition of normal. Having a holiday with others where I don't have to spend time explaining to people that R is different to the average 17 year old is such a refreshing change. Often people ask about her then their eyes glaze over when I try to explain about Di George Syndrome and autism and learning difficulties etc etc. In the past I have been told by well meaning friends "at least she looks normal"!! Oh yeah, that's an old classic. Do they think that in some way makes up for the fact she CAN'T do a lot of things that the average girl her age can do without support?

We're having to face up to the changes coming up in her life now. She's just turned 17 and in 2 years will have to leave her fantastic special school and move on to a special college or somewhere else. For years I kept my head firmly buried in the sand about the future for her, when she was small I was too scared to look forward as I didn't know what future she may have. As a baby I didn't even know if she'd have one.

Anyway, I now have a wonderful 17 year old daughter who is generally happy and making progress at her own pace. She has a group of friends and is a lovely caring girl.

The other day we spent a bit of time at the local park with another friend from special kids who was in the area - her blog is there too, 'family blog with a difference. Another one of many families that get together through special kids, everyone with different families, different disabilities but so many struggles that are the same when it comes to our kids.

Easter weekend, kids at home on and off, just realised R isn't home yet from her Dads and I thought she'd be back by now! We're off to my parents for the day tomorrow, no doubt with moans from the kids when they realise we've all got to walk there now we don't have a car!

J seems better this week. I'm pretty sure he had skipped a few doses of his medication, especially as when I did have a talk with him the other evening the first thing he said was "you don't have to worry about me, I am taking my meds" and I hadn't even mentioned that. Oh well, I hope it's just a blip and I was getting my knickers in a twist and blowing things out of proportion.

For some reason my last post appeared as one long paragraph, not sure why it did that but hope it's not going to do it this time. I even when back and put paragraphs back in but it didn't save them. I hate trying to read something that's not laid out properly. I could launch into a whole long rant about bad English and grammar etc but I'll save that for another day!

Holidays!!!

Tomorrow we are off to Kielder Forest for a few days with some great friends and kids. We went last year and had an amazing few days and looking forward to doing it again with a slightly different bunch to last time. Thanks to Kerryanne for posting links to her blog I decided it was time to resurrect my blog properly! So much has happened since last year. J lost his PCV licence and is now on a car licence renewed annually due to medical reasons so that meant he lost his job driving the buses. After a few months of work with them again in the summer selling tickets ended up unemployed again in August. After a lot of talking he decided to go to college to retrain as an electrician. That means with neither of us working we're totally skint. Sold the car last month, we decided it was now a luxury we couldn't afford any longer. On the upside, I've already lost 4lb and we are all fitter! We both applied for jobs last year and got nowhere. After a few months there weren't even any jobs going to apply for. I tried again before Christmas and got one interview but with J at college trying to sort out childcare around me working and him studying was going to be a ballache. Almost impossible to get anyone to have an almost 17 year old who can't stay home alone for very long. We do get direct payments to help get a carer for R but it's only 3 hours a week so that wouldn't go far. I decided that I'd look at going back to education - last schooling was GCSE's in 1988! I've signed up with the OU to take a level 1 certificate in Health and Social Care starting in October. It could lead to a degree in the long term or I may do this one and maybe a level 2 and then get a job, who knows. E finally made up her mind what she wants to do, she finishes college in a couple of months. After much dithering about doing nursing she decided she wants to do that but not work in a hospital so she applied to Learning Disability degree courses at a few uni's. She got an offer from Northampton and provided she gets the grades she needs she'll be heading 4 hours away in September!! So proud of my big girl :D R is finally settled in post 16 at her school. Took a bit of settling in but she's blossomed so much lately and really grown up. Still often hard work mentally with repeating questions and so on but she's lovely. Her school is moving the 14 to 19 students to a new building on the site of a local secondary school in September and she's been involved in a joint project with that school and her classmates that has gone really well. After lots of teamwork exercises and lots of talking about potential problems they had a weekend away at Brathy. She's now been invited to the other school's school council meeting as a representative of her school to give a presentation! J is pretty good - I think. Ups and downs are pretty much daily and sometimes hourly but he isn't worrying me too much lately. He has closed windows quickly a couple of times when I've come into a room so I guess he's been web browsing things he'd rather I didn't see but it's not ongoing. Just wish he'd be more open if he's pondering and searching for stuff. At long last we are getting long term support. He has had a social worker for a few months and through him I now have a carer support working from Making Space who drops in often for a cuppa and chat. They also organise carer get togethers for people caring for someone with mental illnesses which is lovely. No need to explain things when you get chatting! I also got a carers grant which almost paid for a years membership of a local hotel gym and pool which I started last week. Here's hoping with all the walking, swimming and going to the gym there'll be less of me by the end of the year. I've lost 2 stone since J was in hospital. My size 24 jeans were tight and last week I bought a pair of size 20 straight jeans and they fit! I don't even have to undo them after eating and when sitting down! Time to wander off to bed I think, up earlyish tomorrow to go into town to pick up a hire car for our holiday and buy S some new trainers.

Oh dear, I lapsed more than I realised!

Well, I thought it had been a few months since I posted, didn't realise it had been more than a year. To be continued .....

a poem

I didn't realise it had been so long since I blogged. I did take the decision to stop for a while mostly because it seemed to be getting so negative and moany it wasn't helping. Anyway, after an awful few weeks with R and her almost collapsing in my arms in distress today I sat down tonight in tears after everyone was in bed and wrote my first ever poem.

Since the day you were born you were happy and bright
the sun shines through your hair gold and bright
then hormones and stress did turn up one day
little did we know they seemed to be here to stay
sometimes I look at your distress and stare
on days like this it feels like Rebekah's not there

Oh where did she go I'm sure she was here
here's hoping that she's still somewhere near
the hope and the dreams seem so far away
on a horrible stressful and upsetting day like today
today I looked at your face tearful and bare
and I knew that again Rebekah's not there

the world must seem such a confusing place
it only takes a minute to see that in your face
the hurt and confusion for all to see
but you hold it in and only show it to me
my happy smiling girl seems to have vanished into thin air
cos right this minute it feels like Rebekah's not there

I hate that this world can be such a cruel place
a few misplaced words shows the hurt on your face
a few careless words, a comment without thought
a snide remark that leaves you distraught
I'm sure that she's here, I'm not sure where
today is a day that Rebekah's not there.

Two angels came calling

What to call this one? Will think about it and add a title when I'm done methinks.

I saw the doc for a full breast examination and he felt what I did and thinks it's normal tissue lumped together and sitting over a rib but to put my mind at rest he referred me to the hospital breast clinic and I go there Thursday of next week for an ultrasound scan and any other tests they decide on. Got the letter today which warns appointments can run for up to 3 hours depending on the tests they do! Right under that is the bit about parking charges - grrrr. I don't feel majorly worried about it but was upset to get the questionairre with the letter about family history of female cancers.

I'm starting to feel a bit more like myself some days, not so much others, but it's a start. Waiting for an appointment with the therapist now, on the waiting list. Is there anything that doesn't have a waiting list these days?

Christianity.

Not blogged about religion before, not something I talk to anyone about much as to me belief is a personal thing rather than something I want to discuss and argue with anyone over. Why is it that some people seem to be threatened by someone saying they believe in god and seem to feel the need to try to disprove their beliefs?

I am a Christian. I don't go to a church very often because most of the ones I have been to I've come away from feeling that too many of the people there call themselves Christans because they turn up once a week in a nice outfit but the rest of the week look down on others and don't behave in a very Christian like manner. I did go to church last year, tried the Spiritualist Church as I felt their beliefs are the closest to mine. I enjoyed it but the service being on a Saturday early evening isn't easy to get to with the kids and generally doing stuff but it's not the going to a building that I find important.

To me a lot of people learnt about Christianity in school and God was portrayed as a man because Jesus was his son so he must have been a man. You then grow up with the image that God is a man peering through the clouds and is great and good and that then leads to people thinking that God can't exist if bad things happen. To me God is a spirit, he's there, he's here and he's in the hearts of believers. Angels - one of the first things kids know about Christmas is the Angels. Beautiful creatures with wings that appear to us. To me I see Angels as the spirits of people who have passed on to be with Jesus. I know some Christians will disagree with me but we all have our own way of interpreting things and that's mine.

I believe in God, I believe that Jesus came to earth to show people the way. The Bible which a lot of people feel is mega important I see as a great book that contains people's opinions mostly rather than something that includes rules. I know there is guidance there that helps a lot of people but too many conflicting bits for me to put it up there as a major influence. To me being a Christian means that I always try to be a good person, treat others well and help others when I can. To teach my kids to respect others and property and to behave politely, I think on the whole I do all that. I'm not perfect, I make mistakes but I carry on.

A couple of weeks ago two angels came to my house, not the spirit kind, two lovely ladies from a local church who came to help us. When J was ill one major problem was debts. He wasn't keeping up with payments on things and wasn't dealing with them so they grew. He was on sick pay so had less money and people were demanding more and more from him. A few weeks ago I saw a poster about Christians Against Poverty (CAP) and their debt service so I gave J the number and he rang to make an appointment. We had to wait a while but we're so glad we did. Once our budget is sorted they will contact the people we owe money to and we'll make one payment a month to CAP and they'll negotiate and make payments on our behalf. The stress that was lifted that evening was huge.

J and C, the angels, came to our home armed with a large box of chocolates and a file of paperwork. One of the first things they said was "we are here because we believe God loves you and you need some help". They then explained that our beliefs don't make any difference to the service they offer and really religion wasn't mentioned much after that.

The service is amazing, it's either totally free or you can factor in a small donation to your monthly account so they can go on helping others. After seeing so many debt company adverts all over the place that take advantage of people and that have lots of small print finding people who are there just to help was a breath of fresh air.

Oh, we now have an addition to the family! A lovely little pussy cat called Molly! Phone the rescue people on Saturday to enquire, bought her bed and bits an hour later and picked her up Sunday lunchtime! She's a beautiful girl, rescued as a stray on a farm and produced 6 kittens the following day. She's only a baby herself, they think she's a year old at the very most. Kittens all rehomed and mum now spayed she's at this minute curled up on a chair behind me fast asleep. I'll have to get some photos later.