Wednesday, 30 November 2011

A Box of My Life - The 10 Year Prediction

Following on from yesterdays blog 'A Box of My Life (Up to 2011)' some people have suggested that I should try and predict or think about what I would like the additional five items to be put in 'My Life Box' in 10 years time.

So here goes, this would be my wish list :

1. A photograph of both my boys in their school uniform together, happy and smiling and proud
2. A photograph of J1 at his 18th birthday party holding his own beer!
3. A laptop, on which I have written fiction novels
4. A copy of my first published book
5. A photograph of Hubby and I on our 10th Wedding Anniversary and our cards to each other

All kept in a ... bigger Tiffany box of course...

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Tuesday, 29 November 2011

A Box of My Life (Up to 2011)

I started this blog as a memory book for my boys, and in a vain hope that if it got buried for 200 years someone might find it and think 'How lovely life was back then.'  As I have said on numerous occasions it, for me, has become so much more than that. 

It has become important to me to post on a regular occasion, sometimes it makes me feel empowered, that I am doing something that is completely my own, sometimes it makes me feel proud if I think something reads particularly well or if I feel I have articulated what I wanted to say, sometimes it makes me feel more organised if my mind has been particularly muddled with thoughts and / or issues, sometimes it helps me vent my emotions.

By the time I stop writing this blog, which I hope won't be for a long time yet, it will be quite lengthy.  So I started to think about my life 'In a Nutshell'.  I was thinking about what things / memories I would put in a box to encapsulate my life accurately up to and including 2011. 

This got me thinking about an exercise that my Year 9 English teacher asked us to complete.  He asked us to write down all the roles you play in life and to think about how important you believe each one of those roles to be to you and in the life of others.  Of course back then it was, Daughter, Sister, Niece, Cousin, Student, Friend etc.  My 'Life in a Box' would have been somewhat different then, it would have been full of 'I hope', 'I wish', 'I intend' and about moulding my future, studies and career.  I don't think I was even thinking about personal / love life.

Now I am in my 30's I feel as though that needs revisiting, so here are the things I would choose to put in a box so if someone did find it in 200 years they would get a sense of my life and who I am at this point, in my life, at 30. 

It would be lovely for people to join in with me on this, so please share what your 'Life in a Box' would be (max 10 items).  Say what item you would put in and what you feel it would say about your life.  Here goes mine :

1. My Birth Certificate (who I am)
2. My GCSE and A-Level Certificates (Educated well)
3. A family photo from my first Florida holiday with my parents in 1994 (Happy Childhood)
4. Photograph of me and my friends (Good friendships)
5. Sex in the City Box Set (My inspiration and encouragement to dress fab and go for that career and for love)
6. Letter of Offer of Employment from my London 'Head of Department' job (Made it to Management in my career and worked in 'The City') 
7. J1's Birth Certificate (My baby, My family)
8. J2's Birth Certificate (My baby, My family)
9. Marriage Certificate (My happy and amazing committment for my hubby and I)
10. Photograph of my hubby and I on our Wedding Day (Happiness and Love)

Maybe I should schedule to do this again in 10 years, and be allowed to enter a further 5 items that captures those 10 years.  One final thing, some people may be surprised to see that something 'Tiffany' wasn't in here as I (as am most girls I think...) am in love with Tiffany and am proud that I have spent at least 2 days of my life wondering around dreaming in the Fifth Avenue NY store (over four separate visits to The Big Apple).  Well, my box holding all of these things would be this :

Monday, 28 November 2011

Christmas ... All Wrapped Up

A friend of mine made a very good point the other day.  She noted that she had purchased and mostly wrapped all her Christmas presents and placed her Christmas food shop to be delivered late on 23rd December, and was very happy about it. 

Another friend noted / asked wasn't she sad that she wasn't going to have the joy of doing it in the throng and throws of Christmas in December when it was more ambient?  This has always been the stand that I have taken, I love having the same Christmas music piped in every shop while you queue for 20 minutes to pay whilst sweating out in your winter coat, that is what I remember from my younger years, particularly as I started to earn my own money and was responsible for purchasing my own gifts for people. 

My friend noted that with working full time and fitting in all of her childrens activities it would not be a happy, ambient time and any spare time left in December would now be available for some quality family time, something that in previous years had lacked a little.  And I would have to agree that I do understand exactly where she is coming from.

I always worked full time, a necessity as a single mother as I was at the time, but until I started working in a position that meant I had four hour round trip commute to add into the mix I didn't realise how much I would appreciate Internet shopping and a very generous mother that received all the delivers for me!  Wrapping was done in snatched hours here and there when J1 had gone to sleep and I think the grocery shop was done at stupid o'clock one morning at a 24 hour Tesco's.  Nothing Christmas-y or ambient about that.

And even though I am now a stay at home mum, having children that you are trying to keep only aware of the spirit of Christmas (i.e. not buying presents sneakily while they are with you, they ALWAYS see something or wrap them while they are not in the house, rare) doesn't make it the easiest thing to do.  Also, even though I no longer have a full time job in the mix, last year between October and March it was a manic time. 

We had a wedding to plan in a short amount of time, my mum's 60th birthday, Christmas, J2's first birthday and whilst all of that was going on J1 had to have massive surgery on his hips in November, which put him in a double A frame leg cast for six weeks, which because of his size the set had to be wider than the door frame, thus meaning he was bedroom bound for the duration. 

I realised that I was going to have to sort Christmas in a practical manner rather than an indulgent one like I used to be able to do BC (Before Children) and again, because of all that was going on, including having a nine month old as well, the 'preparation' Christmas spirit was lost a little for me.  However, what was gained was quality family time, we sat in J1's bedroom and played Christmas music and watched our favourite old Christmas movies, we made Christmas decorations from kits and wrote letters to Santa.  We decorated J1's bedroom so it was his very own Christmas grotto, and we all loved to be in there in the evening as the lights twinkled away.

And that is what my friend had found in previous years, she was so busy trying to fit everything in to get that Christmas spirit that you can afford when you are a young, single person that she spread herself too thin and ended up not enjoying any of it, and she was trying to rescue that this year.

That inspired me to do the same because the plan this year was to leave it all until December this year, to drop back to old habits.  But then I remembered how lovely those Santa Grotto evenings with the children was, and with our tradition of buying a new 'holiday / seasonal' movie every year we have got a fair few to watch. 

So this year hubby and I struck a deal, we would do the bulk of the shopping as and when we saw things, and via the Internet as long as I had one afternoon in which to purchase 2 or 3 gifts, in the old traditional style.  And we were lucky this year, our annual weekend away took us to Cardiff, Wales and the Christmas decorations in the City were awesome and it was manic, even though it was November not December, so I still got the 'old' Christmas tingle.

And I still have the excitement of getting everything wrapped, which by tradition my mum and I do together all in one afternoon while listening to our old Christmas Cd's (and I believe my mum still has a few 'tapes' - retro) and eating a Terry's Chocolate Orange each (traditional, none of these new fandangled ones they bring out).

So I am very much looking forward to December, I have no panic buying to do, only wrapping, tree decorating, eating, watching movies and making old fashioned Christmas decorations with the boys.  I haven't even got Christmas Dinner to do this year as it's our turn at my parents. 

December cometh.

Thursday, 17 November 2011

The Disability Diaries (The Life of J1) : The Long Learning Process

Following our accidental 'Diagnosis Day' (The Disability Diaries (The Life of J1) : Diagnosis Day or Finding Out by Accident) the life of J1 and myself became a long learning process, that continues for us all to this day, as every day can present new and unusual challenges. 

On top of all the usual learning processes that comes with having your first baby, I had to learn induct us into a whole new world, our whole new world.  There was a new lingo to learn; disability; special needs; physiotherapy, occupational therapy, speech and language therapy, paediatric specialists, hi and low muscle tone, melaklonic goes on.  A new day to day routine to establish which included 3-4 sets of physiotherapy, hydro pool therapy sessions, sensory sessions and a whole multitude of doctor and hospital appointments.

First of all I had to learn what Cerebral Palsy even was, I used wonderful charity sites such as Scope and Cerebra.  But since CP is such a wide and varying condition it was difficult to get any real solid information, what I did learn was that it isn't a degenerative condition, good news, but that until J1 started to grow it would be difficult to ascertain how he would be affected.

I found it ironic that a condition which would probably affect J1's learning capabilities, meant the whole family all found themselves needing to learn a whole new way of life.  Before J1 started school, when you are in the usual stage of being with your baby 24/7 I would struggle to think of ways to fill our days (other than the medical sessions).  I put off trying to meet with friends with able bodied children because it would completely send J1 into a freak out, and once he got into one it was almost impossible to draw him out of it.  Plus, again I didn't want to see all the milestone he wasn't hitting.  Also I felt a guilt towards them, that by us trying to join in it held them back. 

The only people that J1 would settle with was my parents so we spent most of our social time with them.  I did discover however, that J1 did like to walk around the shops, it would kind of mesmerise him and that became something we would do often. 

One thing we are very lucky with is that J1 can eat, properly, and he so enjoys it.  So many in his school classes and groups do not have this pleasure, instead having to be tube fed, and for this I am so grateful.  I remember the professionals always being so surprised.  This is something we have always been so proud of for him and so happy that he can get true enjoyment from it.  And of course that lent itself to the activity of 'going for lunch' or 'going for cake' and J1 would always be such (and still is) an angel in restaurants and cafes.  Whilst other mum's ran around trying to get their children to sit and eat nicely and look harassed this was something we were good at.  People used to comment on how you could see how much he was enjoying it; that was our 'adventureland'.

It is a constant learning process, going on holiday that was another eye opener, we can not just 'book' holidays.  We have to know that the rooms will be suitable, that the area will be flat, that the beach will be accessible, that we can hire (although some airlines do not have them so even possibly buy or rent - which is far from cheap) a special flight seat for the aeroplane and that they will have wheelchair accessible vehicles for transport once we arrive.  

Before we go on a day out we have to ensure that the parking isn't on mud, or has an accessible area, that is is relatively flat, that there are adequate facilities where we will be able to change J1's pad (the ideal thing is a 'changing place' these are RARE, usually a 'disabled toilet' is still for an able bodied person and our choice is to leave him in a wet or dirty pad, or change him on the floor - I believe this is unacceptable but if you ask most places as far as they are concerned they are providing adequate facilities as stated by the law, i.e the bare minimum).

The biggest shocker in the learning process always comes when something happens that you just didn't consider you would be dealing with on that diagnosis day.  Like, because J1 can't walk, his hips start to form in the wrong way, the bones start to mould into the wrong shape and it becomes painful for him to just sit.  This has resulted in two massive and rather harrowing hip operations.  One when he was four and one just last November.  Following the huge operation he then has to suffer 6 weeks in a double leg cast.  I would rather have my own arms cut off than for him to have to go through that, but he has, twice.  Sadly we can't guarantee that he won't have to suffer it again either, the one thing that can undo the work undertaken already is rapid growth spurts and J1 certainly has those.  And the operations help but do not fully solve the issues.

You learn to help soothe him when he is on morphine for the pain in hospital.  You learn how to move someone that has had massive surgery on their hip in a double leg cast when you need to change and wash them or just take the pressure off of their bum and back.  You learn as they get older the leg casts have to be set so wide, they do not fit through normal doorways and are bound to one room for six weeks.  You learn how to make that room a fun entertainment centre through the day, and as cosy as possible for long uncomfortable nights.  You learn you need friends and family to visit to buoy you all up.

You learn to deal with all these things because you have too in order to make life as easy, fun and special as possible everyday.  But you don't realise that at the beginning.  You learn that too. 

You also learn to count your blessings for everytime J1 does hit a milestone I want to throw a party for it, I see that it is a miracle and when J2 hits his milestones that is a miracle just as much, I think about their little amazing brains processing and filtering information and absorbing.  Sometimes I don't think parents get to appreciate that as much as they would like.

Everyday I learn something new about J1, he shouldn't eat after 7pm otherwise his chances of reflux increases, that if he doesn't get physio or some form of exercise and good diet throughout the day it can cause him constipation for days, that he remembers things that were said from months previously and recites it in his sleep, but the most treasured thing I have learned is that J1 never fails to surprise or amaze me at least once a day and his progress is something I love learning about.

Wednesday, 16 November 2011

World Prematurity Day - Prem Birth Story : Caroline and Sammy

Caroline and Baby Sam's story

Having a premature baby was, to me, quite a distressing experience, especially as this was nothing to do with my baby but due to a very rare and distressing condition that affected me during my pregnancy.  Basically I had severe hypotrophy of the breast, AKA Gigantomastia which meant that I had a very rapid and severe overgrowth of my breasts which resulted in me struggling to fit into an L Cup bra which was the largest cup size I could get.   As I am of a petite frame I looked completely bizarre and in fact nobody realized I was pregnant.  All I seemed to be subjected to were stares and vile comments. 

Emotionally I was a wreck and physically - by about week 26 of my pregnancy – my health was deteriorating too.  I was having trouble breathing due to the sheer weight of my top half and my legs had swollen up too.  Nobody could tell me when the growth would abate and I was told it would basically continue until the baby was born.  Most women dream about having a fuller figure but this was just ridiculous and I just wanted it to stop.  I was worrying constantly about the effects this was having on my baby, but was reassured by the top Breast Specialists in the Country that this wouldn’t cause him any problems.  However I still worried.  I also felt completely alone due to the fact that this condition was so rare and there was no-one I could speak with who could offer encouragement  and support and say “it will be fine” as there is hardly any information or case studies recorded about this.

By about week 32 my Obstetrician decided enough was enough and it was time to think about delivering our baby.  My husband and I were so frightened – a) because we knew this would be best for me but b) it wasn’t the best option for our baby.  However we knew we just could not continue much further as my health really had deteriorated rapidly by this point.

So on 5th April 2011 we made our way to the hospital for our baby to be induced at 34 weeks + 4 days.  The whole experience was definitely frightening as our main concern was about our unborn baby.  Luckily enough we had a very supportive and sympathetic team of medical experts with us throughout who were very considerate to my feelings of anxiousness and also embarrassment, and who helped reassure us that this was for the best.  I don’t think we would have coped so well without their support and encouragement.

We had a few scares as the heartbeat of our baby kept dropping during labour which was extremely worrying and my energy levels were dropping quite low.  Eventually we were taken to theatre as the baby was lying in an awkward position and there was the possibility of my needing to have a c-section.  At this point I did have a major panic as I just wanted our baby to be born safely and I started to feel out of control.  Luckily at 6.08 pm on 6th  April 2011 our beautiful baby boy Samuel came into the World by forcep delivery weighing 5lb 9 oz..  His weight was fantastic considering everything and when we heard him cry the relief we both felt was overwhelming.  I cried tears of joy – he was the most beautiful little thing I had ever laid eyes on. As is the norm with prem babies he was taken down to NICU virtually straight away to be checked over.  I then felt as if my right arm had been cut off and despite knowing these checks had to be done, I just wanted to hold my baby and have him by my side.

It seemed like forever before we were eventually allowed down to NICU to see him.  Both my husband and I just wanted to see, hold him and be assured that he was doing ok!  He was put in an incubator and was suffering with a little jaundice but other than that our baby boy was perfect in everyway.  We both were so happy and relieved that despite everything our son was proving to be a little fighter.

When I think back to other babies in the unit, I am still so thankful that Samuel was such a healthy weight.  He spent a total of 6 days in NICU which was nothing compared to the length of stay for some of the other little babies there.  I really felt that someone was watching out for us by delivering our baby safely after such a traumatic pregnancy.

The hardest part of it all was going back to the ward on the first night.  All the other women had their babies with them but obviously I didn’t.  It was very strange and I found that most of the other women didn’t ask where my baby was  either – I think they  just didn’t want to intrude as I was visibly upset anyway.  I got very upset when my husband went too as I just wanted to have him by my side however I must say I was so tired I did manage to get a good night’s rest despite my worries.

Going to NICU each day was draining, more so when I was discharged after 2 days but Samuel wasn’t.  Obviously it was draining emotionally but also physically my breasts still hadn’t reduced at all and my body was just dealing with the after effects of labour.  In an ideal world you would be at home just bonding with your baby and resting up but it was so much harder for me as I was away from home and constantly on the go when what I needed to do was to rest my feet up as much as possible so my body could recover from labour.   We were only there 6 days but that was enough – I just got fed up with being there and craved being at home where we should have been. That aside, when at NICU it was wonderful, especially when we were allowed to cuddle and feed Samuel and after a couple days in his incubator he was put into the nursery room so we were able to cuddle and feed him pretty much the whole day and night if we wanted to.  That was just the best thing ever.   It is heartbreaking when you see your baby covered in wires and it just takes your breath away every time you see them move or open their eyes.  This part of Samuels’ arrival into the World will stay with me forever as one of the most worrying, frightening times in my life. However the doctors and nurses in this unit were fantastic and we are eternally thankful for the help and support they provided.  They always kept us updated with Samuel’s progress and told us we could ring anytime day or night if we were unable to get there at all.  That gave us much needed peace of mind.

I did feel a little resentful of other women who were able to take their babies home straightaway and also had some tearful moments whilst at NICU but I think that was just a natural emotion to feel considering the circumstances and didn’t last long.

Samuel is now 7 months and doing wonderfully – he is eating solids and having regular development checks.  He has put weight on steadily and is just beautiful – he brings such joy into our lives!  As for me, I am still awaiting news of a reduction operation but that is another story. In the meantime we are just enjoying every second with our beautiful baby boy!

World Prematurity Day - My Prem Story : Lynsey & J1

It was a shock to find out I was pregnant.  I had done all the right things - or thought I had (I suppose I will never find that out for sure unless time travel allows me to go and review those few weeks).  I was at a mature student in my first year of my Law degree at University and for once had tried to plan out the next 5 years of my life.  Maybe that was why it happened, to teach me that you just can't plan what goes on in life!

My due date was 25th December, my little Christmas baby was nicknamed 'Santos' by my good friend and on that cold 2nd November night as I sat up on my parents sofa having just finished watching a movie with them I would never have predicted that my waters would just 'break'.  Of course I didn't realise that this had happened, I was merely laughing with my mum about the film and suddenly stopped laughing when I thought my bladder had given up on me!

Being a first time mum and completely green to what was going on, off I waddled with just my handbag and a towel wedge between my legs.  Little did I know that I would not be returning home for another 3 weeks and I would be coming back with a brand new, premature baby boy and a permanent look of shock on my face.

For three days I was monitored, I had an extra scan and was told that there was still water around the baby and if the leaking had stopped they could replenish themselves.  The baby was approx 4lb 7oz.  The doctor visited on the Wednesday morning and said if the waters continued to hold I could be discharged the next day and they would try and get me to at least 34 weeks.  I started to pack up in anticipation of going home and went and had dinner in the hospital restaurant with my cousin who had come to visit.

Then I felt the, what I now know was inevitable, happen.  My waters started leaking again.  The midwives put me straight on the big belly monitor and my brother came to visit.  Just as he was leaving I was checked again and told that they just wanted to Registrar to come and check me.  They suggested that my mum stayed.  O.k I said with no idea of what the next 24 hours would hold.

The Registrar arrived and after much being talked about and not too (very annoying) I was told I was to go to the Early Delivery Ward as the babies heart rate kept dipping.  Nothing to worry about they said but in the EDW they would be able to monitor the babies heart rate all the time at the nurses station.  I remember asking the nurse if I needed to take anything with me.  I was told, yes take everything dear.  Looking back now I should have sensed the pity in her eyes that I didn't have a clue I was imminently going to be delivering an 8 week premature baby.

On arrival at the ward I was hooked up once again to the Big Belly monitor.  The Registrar popped in several times to update me that there had been no improvement and eventually broke the news that I was going to have to deliver by emergency c-section.  Now?  I questioned.  Yes, now.  I was told the nurse would be in to prep me.  I realised at this point I really had not done my homework, I vaguely knew that a c-section meant that they were going to deliver the baby by surgery but that was about it and I had no idea what dangers having a premature baby were.  But as stated before, it was probably for the best in one way but not in another.  By that I mean I didn't question anything, I literally knew I had to put mine and my babies wellbeing in the hands of some complete stranger.  I had a strange sensation of it being like on a crashing aircraft, you just had to hope.

What seemed to be an eternity later, the fear having had time to attack, I was taken down for my emergency c-section and at 3.02am on 6th November I became a mum to a 4lb 9oz little boy.   All I saw was a grey, floppy little body being vigorously rubbed before being wrapped up and was told he had to go straight to intensive care in the NICU.  I was left shaking uncontrollably with a vision of a scrunched up little grey face flying past me, the door closing on it's soft shutter and hearing just the faintest little warble of life as the door clicked closed.  

Thus I set about my first few days as a mum in, quite frankly, complete shock.  I hadn't even chosen a name and it seemed like an enormous task to do so.  I decided I couldn't pick one until I had been to see him.  My mum warned me that when she had been to see him, he had a large mask (CPAP) covering his tiny face and not to be shocked.  But when I arrived that had gone and 13 hours after he was born I was allowed to hold him.  I remember thinking 'My god he has got big feet' they seemed huge against his little cocktail stick legs.  Little folds of skin covered him everywhere, where he had no fat!  He also didn't have nails on his fingers and toes or eyebrows.  But he was the most beautiful miracle in the world to me.

For some reason I had it in my head that at 32 weeks he would still be undeveloped facially and alien like, you don't imagine for a second that they are a perfect little baby inside of you.  I decided on a name and had visitors just like normal but it was so hard being on a ward with all the mum's and their babies while you are laying there minus the crib.  And you feel torn, having had a section I was in pain and needed to recover, but all I wanted was to be by my baby.

We had a relatively smooth run in Special Care, no unforeseen infections or problems.  I had been told not to expect him to be out until the original due date and had steeled myself for that, but he progressed quickly, gained weight and started to bottle feed along with tube feeding after two weeks (apparently he was too young to have the 'suckle' ability prior to that).  I was allowed to hold him and give 'Kangeroo Care'.  Eventually we were transferred back to our local hospital by which time I was told that I could have a private room with the view that I would be fully caring for him as I would at home, but for a few nights would have the hospital on hand should I need it. 

After successful completion of those few days we were discharged, a full month before he was even due to be born.  My tiny little scrap was all mine to love and care for.  We had no idea at the time that we would discover J1 had suffered brain damage during the last hour of the birth and that he would be diagnosed with quadriplegic cerebral palsy at 11 months, no idea of what to expect or not to expect.

Life has obviously never been the same and never will be.  He brightens every day and is packed full of character despite his physical disabilities.  Life is wonderful, as is he and I hope to be able to write about his achievements with as much glowing pride as any mother within my blogs.

Monday, 14 November 2011

Be Careful What You Wish For... (Monday Madness)

Last week I penned a blog called 'A House is Not a Home' in which I outlined how we had outgrown our current house and was starting the long haul search for a new one.  Why long haul?   Well with J1 and his special needs of a house that would suit his disabilities and equipment storage requirements, finding something suitable is far from easy.  I also wistfully wrote about having more family living space and as an extra bonus a utility area and room for a dining table.  A pipe dream.

So I thought.

Once we had found an estate agent that actually grasped the concept of our predicament of having certain things within a house for J1 (and believe me, many will listen and then send you a whole bucketful of unsuitable properties anyway) he sent us a few details to review and they good like they were worth a look.  The first of the 'possibles' we wanted to jump all over, it was a bungalow for a start (quite rare in the size we need) but we both had a nagging feeling that something was not going to allow us to have that property and that was right, another agent had already started the letting process with some tenants.

I was disheartened.  I know how long it took to find this house and suitable ones just are not in abundance.  To have found one so good was a long shot to start with so to lose it was disappointing.  I was not in good spirits when the Estate Agents office sent through another two.  Hubby noted one was a house (so I was quite dismissive to start with 'Hmpf, great a house, unless it has got multiple reception rooms [so J1 can have one as a downstairs bedroom] and still give us extra space then it's not worth even bothering to look - more hmpfing and grumbling') and one was another bungalow... hmmm o.k worth firing up the laptop to look.

I could immediately see that the bungalow was not going to be suitable (with a 'here we go' - months of looking and not even going to view them), as already mentioned, with most bungalows it wasn't going to be big enough.  I thought I would glance at the house details quickly so I could formally dismiss it and we could continue with the search, the Estate Agent had mentioned that he may have a suitable property coming onto the books in January.

As I nonchalantly flicked open the details of the house, did my eyes deceive me I wondered?  This property looked like it could work, I felt a little flutter of excitement, because not only did it look like it had a suitable 'reception' room that would work for J1, but it would give us more family room, a fair bit more and it was a 'period' property, with bags and bags of character (I use this as a 'I know I have hit 30 and 'grown up hood' because I am now loving 'period' properties with 'character'!)

On viewing day I got more excited as the time ticked by to go and see it.  Hubby was less enthused but I just knew I was going to love it.  And love it I did.  We spent time viewing and then working out logistics and then viewing again.  I expect I was an Estate Agents dream, I couldn't hide my excitement.  Once Hubby was on board, we entered the scary phase of negotiating rent and putting in our application to the landlord.  I hate that bit and envision everything possible going wrong, I suppose like for buyers being gazumped, or the chain breaking.

I am still in disbelief that we have managed to find and secure somewhere new to live so quickly.  And thus comes the stressful part... packing and moving right before Christmas.  Madness?  I think so.  I struggle to get the normal day to day stuff done in between school runs and the entertainment committee that J2 requires to get him through the day.  Where I am going to get the opportunity to pack up an entire house, an entire full of stuff house, is a mystery to me right now.  Days are ticking by and I have only just bought up my first lot of bubble wrap.  My aim is to try and do it little and often, a cup here, a drawer there and hope for the best.

But once that is done, all those things I mentioned as a wish list in 'A House is Not a Home', the space for a dining table, a utility room, more room for J1's equipment to live without us all walking into and being covered in bruises, a nicer area to live will be real for us all.  And for that I am very thankful.  And I apologise to anyone that may feel the wrath of the stress of the next month!

To a new home and an exciting new year.

Friday, 11 November 2011

A House is Not a Home (Family Friday)

This may shock some people but we don't own our home.  We are renters.  And quite frankly with the current economical climate very happy about it.  We have the obligatory discussion about if it is something we should consider, now we are married with 2.4 children and we always come to the same conclusion -nope not right now.
I believe the right time will come, in the right place, with the right house but that isn't right now.  So for now I love the house we rent.  It has some character but has been nicely fitted out by a landlord that demonstrates good tastes and we are very lucky to have it.  Due to our family circumstances of J1 being in a wheelchair and severely physically disabled we do not have the pick of any house we want.  The chances of finding a perfect adapted house are zero so we work around it.  We have to have either a bungalow or a house that has large enough downstairs space (i.e. multiple reception rooms or a large dining room) so that one of those spaces can be made into a bedroom, large enough to house bedroom furniture and a bucketful of equipment.

Just something else that is not easy as it can be for other families.

So to find something suitable and something that you love as a home is tough.  But we managed it with this house.  We have spent two happy years here.  But children grow.  Children's 'stuff' increases (and believe you me, I am brutal on clear outs) and although we have managed to date, the last month when Hubby has been home 24 hours a day too it has become glaringly clear that we have out grown this house. 

When Hubby first started to venture into these waters I was venomously against the idea.  Not only was the house doing its job for us but it's in a fantastic location, I can walk to the schools, walk to the sea, walk into town, walk to my mum's, walk to the 'Gardens'.  I argued that I would not move anywhere that wouldn't give me and the children, who are here all day and need stimulation the same pleasent quality of life.

But this year, no matter how we try and think about how we could re-arrange our small family area, we do not even have the space for a Christmas tree. 

We have no room for the gifts that Santa will bring.  J1 will only get more and bigger equipment to aid him in life and J2 will only continue to grow and charge around at a more feisty pace.

This coupled with our local Council making some very dubious decisions about what is to happen to the happy seaside town in which we live at the moment has forced me to re-think.  So I am to start detaching myself from this house, and letting in new ideas. 

A new area is in the frame but not too far away that we would need to change J1's school at the moment, and budget permitting a house that gives us more family room, maybe enough space for a (intake of breath) dining table!  Maybe a kitchen big enough to have all my kitchen stuff out of the loft... 

...well maybe not 'that' big, think how long it'd take to clean.  But maybe a living room large enough that we can have a Christmas tree.  Our need for more day to day living space has got to take precedence over my longing to have all amenities within walking distance.  Of course I wouldn't choose something that would harm our quality of life, but I am thinking about being more flexible about what is essential. 

Once I got over my habit of immediately saying 'No' to a new idea (think 'Monica' from Friends) I realised how (hard work it would be, yes) but exciting too.

Finding a new home to fall in love with that fits our new families needs.  Of course coupled with the excitement comes the fear of the aforementioned hard work and the fear of disappointment (experienced once this week already grrrrrrr) but I think of us being able to eat around a dining table together and know it is the right thing to do now.

And whatever happens WE ARE HAVING A REMOVALS COMPANY!  Because we do not want this happening to Hubby again...

Thursday, 10 November 2011

Wow, I forgot we took these!

Having just located the hard drive (thingy) that holds all of our photos I have been happily grazing through lots of pictures that I forgot we had.  In 2009 Hubby and I took a Winter trip to Egypt for some winter sun and we booked ourselves onto a 'Star Gazing' excursion in the Sinai Desert.  After being disappointed with the first half of the trip the Star Gazing certainly made up for it, but I forgot we got these awesome photographs of the moon through a very powerful telescope they had set up.  These are some of my favourite photos ever taken.

and then, she {snapped}

World Prematurity Day is in ONE WEEK (17 November 2011)

On Thursday 17 November 2011 it will be World Prematurity Day and March of Dimes is asking all bloggers to do a post about any experience they have had with premature babies.  I will be certainly be taking part and am encouraging as many people as I can to join in and raise awareness of just how many premature babies are born into this world.

So if you have had an experience you would like to share - DO! on November 17, take a moment to visit the March of Dimes website and grab a badge, and spread the word!

March of Dimes

If you would like to post but do not have a blog or know of someone that might want to tell their story then email me on and I will set up a page on my blog to feature all stories.

Me with my little Prem Miracle

Wednesday, 9 November 2011

The Disability Diaries - Sneaky Sneaky...

Everyone has down days.  I have spoken about this before in a post entitled 'The Good, The Bad and The Ugly'.  Everyone is entitled to them and it is perfectly normal to have them.  We are not all Mary Poppins 'Height - Practically Perfect in Every Way'.  We do not live in a movie or a TV series.  We have real lives, with real issues and real emotions and sometimes, no matter how hard we try, and how much we busy ourselves to avoid them, sometimes, just sometimes, they get out. 

Since I had J1 and our lives surrounding the words 'disabilities', 'special needs', 'equipment' began I have to admit those 'down' days became much more frequent to me than they ever were before.  In fact, at one point not long after J1's diagnosis I was told I had 'reactive depression'.  And I had to admit I did.  I took heart that because it was a condition that had arisen due to a rather large shock that time would heal and it would drift away.  And it did.

And I am pleased to say that since that wretched year (it took about a year to bugger off and my brain to process all that had happened and start to cope again) I have managed to avoid any bouts of it since so I am happy that it was exactly what they said it was; reactive. 

What I have now I believe are perfectly normal 'down days' and after I have had them (and I again, am pleased to say that they do generally only last for one day) I look at them and think 'Hmmm cycle related?  Tiredness? Exhaustion?' Usually it's a combination of all 3 and my brain must think 'Er no, not today love, I need a day to wallow'.  But the important thing is I can pick it up, look at it, assess that it was a one off and file it away in the 'Down Days' lever arch with no worry.

I haven't had too many of late I am thrilled to say.  Probably because things have been so out of kilter with the Hubby's operation and such that I just plain haven't had the time and maybe that is why I just did not see the last one coming!  It caught me so off-guard it nearly knocked me into the next century because it followed our amazing day we'd had for J1's birthday.

In fairness, it was feeling under the weather, yet again, that was the first blow.  We have been blighted, like most households seem to have with this darn headcold that 'just won't quit' for over three weeks now.  And now it's delights have channelled into the sinuses, which led me to have my first ever migraine.  Dear Lord!  It was the worst pain I have felt bar child-birth and a mere mortal Ibruprofen did not touch the sides.  J2 looked at me with fear and trepidation as I cried in pain at a mere hair on my head moving.  Despite the Hubby's medical issues right now, he had to step in with the childcare, putting me in a darkened room with some codine and taking J2 on a jaunt on the train leaving me in silence to try and sleep it off.

But once I was down I was down, I could tell and I knew it was going to be a long and tearful day.  I cried at the tv, I cried at the happy birthday pictures from the day before, I cried at all the equipment in J1's room, I cried at the fact that although I love our house it just isn't big enough, I cried at all the tidying up I didn't feel up to doing, I cried at hearing sad news that my friends wife had finally been moved into a hospice, I cried when J2 wouldn't get his pyjama's on.  I maudled.  I felt sorry for my self.  I felt guilty for the struggles J1 endures everyday that I can't change.

I went to bed.

Sneaky Sneaky it sneaked up on me this time but I'll be ready next time and the next day I woke up anew and counted the blessing that I have in my life and filed that day away.

Tuesday, 8 November 2011

The Disability Diaries - Dear J1 ' A Perfect Day' (Birthday Letter 2011)

To My Dear Duckling, J1

On Sunday 6 November 2011 at 3.02am, you turned 8 years old.  When you awoke (very early) on your very special day I told you the story of your birth for the millionth time and we started one very amazing and most perfect birthday-day for you.

We started by secretly eating Maryland chocolate chip cookies in bed while daddy slept and we watched Peppa Pig (the birthday episodes).  Nanny looked after J2 so that you could have Mummy and Daddy's undivided attention, something you love, but these days rarely get, such is the hardship of having siblings (but believe me seeing how loving J2 is with you already I think he is going to be a good brother to you in the years to come).

Next came a McDonald's breakfast, again something you love, but that is rarely bestowed (mostly due to the fact that it is unlikely we can get up and out in time before the 10.30am cut off and of course that we are aiming to be perfect parents that only feed you healthy breakfasts, ahem, well try our best...) After your choice of a bacon roll and orange juice it was time to get to the good stuff - presents.

With Nanny, Grandad and your baby brother arriving with an abundance of annual dreadful singing and many kisses, we announced present opening with some trepidation.  You see, J1, present and card opening in the past (along with the singing of Happy Birthday) has usually been met with a melt down.  I have never understood why, all we could do was try and smile our way through and say 'But it is all good darling, just take your time, little by little' and the session would be quite a painful and sad experience. 

But this year, this year made my heart swell to bursting point when you swiped the present out of my hand and with only minimal assistance ripped the paper off, admittedly you were somewhat more interested in eating the paper than what was in it, but once you had finished, you said something I had waited 8 birthdays and Christmases to hear; 'Can I have another one now please?'

YES!  Of course, here you go son!

And you opened heartily and smiled when we told you what the cards said and kept announcing you were 8.  It was a precious moment to me, en-captured in my heart and memory forever.  I did not need to get hot and flustered because I worried you were going to get so distressed it made you sick.  You enjoyed the experience like any 8 year old would.  And that to me was a miracle happening right before my eyes.  For those that don't believe in them, they should have been there in my shoes watching that day.

Choosing what activity to do to celebrate your birthday J1 is always a little tricky.  An 8 year old may ask for a party with a class of friends at a play scheme, they may run around on the climbing frames and slides, or have a party with a magician or a bouncy castle, but that would give you little pleasure or us, watching you watch.  So we have tried mostly home, family parties in years gone by which have been lovely, but this year we were going to take you away for the weekend, however because of Daddy's operation we had to re-think that this year.

Instead we found an amazing resource centre, hidden just a 20 minute drive from home.  Just 20 minutes away and we only discovered it 6 months ago.  How glad we are that we did.  Willow Park Resource Centre is a fabulous place that has activities that you can enjoy and we can be blessed with having the perfect facilities to help you enjoy.  Willow Park has sensory rooms, numerous different ones, with HOISTS. 

It's like a dream come true.  So we indulged, we booked a Sensory Room (The Ocean Room) for an hour just for you and what a great time we all had. 

As we left you said 'That was nice that was' and tears sprung to all of our eyes.

Our final stop of the day was to refuel at your ultimate favourite Pizza Hut before making our way home for the most lavish (and hotly requested) birthday cake.  In years past, the candle blowing would have been fodder for a further meltdown, but again, this year no such drama, infact we had to do it all three times!  And how happy that made us.

You were tired and exhausted by the end of the day, a day full of happiness and joy for all of us.  This has been the best birthday ever so far and now we are all really looking forward to Christmas as now we have two little boys that are going to really love the excitement of it.

So, to my 8 year old miracle, sunshine and cheeky Monkey.

I love you always.


Friday, 4 November 2011

Dear Boys - Letter of Life 2 (Family Friday)

Dear Boys

October / November 2011

These last few weeks have been very hectic and your normal, calm, perfect (I know, I joke) routine has been knocked out of kilter quite dramatically.

It all started when we were excitedly watching Aunty Marina on TV - Yes!  TV.  Aunty Marina was on best form when she was trying to win money for a fabulous charity called Bullies Out (and let's hope and pray that by the time you are grown up and reading this you will never have had to use them) on a game show called Holding Out For a Hero.  J1, my dear sweet boy, this made you happier than if Father Christmas had appeared himself at our door and we have watched it every day since it has been on!

However it was at this very moment that poor Daddy was very unwell and we had to take him to hospital.  Daddy had gone and got himself a strangulated hernia and had to have an operation on his belly and a stay in hospital.  This meant, J2, that you had to have frequent visits to Nanny and Granddad's (yes Nanny is much stricter than Mummy) which in turn made you extremely clingy (but still very cute) and J1, you got to stay at Nanny and Granddad's like a holiday visit, and you loved it.

Another exciting thing for your boys to have happened over the last few weeks is that we had our very first Halloween Party.  J1, you were 'Chair Charging Dracula' a great idea for you as the cape went right over your whole wheelchair and did not make you too hot (my little sweaty betty) and J2, I told everyone you were going as a little devil, for which I did have a costume, but then I found an even better one and we surprised everyone at the last minute...

Yes dear baby boy, to my unashamed pleasure I got photographs of you in this for the sole purpose that they will be gracing your 18th birthday board in 2028!

J1, what I am learning about you mostly at the moment is that you have so much character and are really quite cheeky, but all in a fabulously good way.  Your ability to drop a one liner and have us in stitches is becoming a common occurrence and for this my heart swells with pride, it is not something I thought would ever happen, let alone at age 7.  You amaze me everyday.  What I would really like you to try and learn for mummy now is to blow your nose into a hanky and not your hand as it really is gross.

J2, your development has me in wonderment, as every milestone you reach on 'normal' time is a great sense of relief and again achievement.  Your little mind is working overtime at the moment, and you are trying (and mostly succeeding) in saying new words everyday.  Your most used one at the moment (as it has just been Halloween) is 'Pooky' [spooky].  You are learning Twinkle Twinkle Little Star at nursery which is lovely, especially when you wake me up singing it in the morning and kissing my eyelids.  I am just not so keen on when my eyes don't immediately open you try and stick your fingers in them and force them apart, we need to work on that...

With J1's 8th birthday approaching fast (Sunday) we have lots of fun activities and eating to look forward too and then it will be full steam ahead for Christmas, which as you are both getting older is just getting better and better.

Until the next time my dear boys.

I <3 you.

Thursday, 3 November 2011

Me - In the alternate universe (Thoughtful Thursday)

I am sure that everyone has a version of themselves in their head that they think they would be if they were ever transported back to when they were young, single and child-free.  I do, I like to call it 'Me, in the Alternate Universe'.

Don't get me wrong, I don't wish to ever be young, single and child-free again, no thank you very much, but I like to think that if I went back and knew what I knew now, in my 30's

I would be a lot more savvy and a lot more appreciative of certain things, those things that as a wife and a mother we very often, give up. 

Now again don't get me wrong, I haven't sat down and written a list of 'things to give up' now I am a wife and mother they are just things that I can no longer legitimately put at the top of my priority list and they fall by the wayside.  Some of those things (e.g. drinking and partying) I have been happy to say goodbye to, most certainly day long hangovers.

But some of them I hold onto in my 'Me, in the Alternate Universe' in the hopes that one day, when the kids are a little older and I get time to appreciate my husband once again I will also have time to appreciate me and the things I loved and have learned I would have loved had I had the knowledge I have now in my 30's, in my 20's.

They are a wide and vast array of things, the things that I appreciate having or having time to do in my alternate universe but here at but a few...

In my Alternate Universe I do work, but at my original job at the local university.  I so did not appreciate the extra time I had when I worked a mere 10 minute drive from home.  And they ran a scheme whereby they would allow you a set number of 'work hours' to go and do volunteering.  This was an amazing missed opportunity by me and in my Alternate Universe I definitely take this up.  

Working locally would mean that I would have the time to fit in at least 3 early evening runs per week

followed by a lovely, luxurious deep, hot, bubble bath with my favourite music blasting away in the bedroom whilst I undertook, at leisure, any beauty regimes I wanted.

I would have pride in my flat, and decorate it myself slowly and deliberately, and it would be uncluttered and have display cabinets / space for my lovely things to be out for me to appreciate (rather than packed in storage in the dark and desperate depths of the loft) - be free gorgeous hot pink stemmed Martini glasses that I painstakingly managed to get home from New York in one piece, be free to look beautiful!

I would take one evening a week to catch up with friends, one evening a week to relax and watch movies, one evening a week to experiment with new recipes in the kitchen, one evening to clean and iron (and I only need one evening because there is only my clothes to iron) and one evening to be creative and maybe take a dance class.

Weekends I would wake at 8 (which now I understand IS a lie in) and enjoy freshly brewed coffee

before enjoying getting washed and dressed singing to my music (where clothes, shoes and accessories would match) and (in take of breath) hair would be straightened. 

Saturdays would be spent visiting friends and family and visiting places all over.  Driving and seeing where it took me.  Visiting all the fabulous shopping centres and places of interest that the country has to offer that I have never made the effort to see when I had the perfect chance (although 'Me - in real world' does get access to doing lots of cool kid things that without kids you don't get the opportunity to do either even though you think it would be so cool to do).  Evenings would not always been spent out, a few of course and doing a variety of things but I would like to offer to babysit for friends and family so that they could enjoy some Saturday Night 'alone' time with their loved one, because I understand now that can make all the difference to a couple in the throng of life with 2.4 children.

Sunday would be race days, I would try and run in a race in a different area every other week, again a great way to see lots of different place.  The alternate weeks would be 'Lazy Sunday' the morning spent in bed, reading the delivered Sunday paper before getting ready to go and meet friends for Sunday Lunch at the pub, or cooking and having friends over before of course getting fully ready and prepared for the week ahead.

As I say I do not crave to go back to being young and single, but I suppose what this blog post points out to me is I miss organising and controlling my days time and activities (lets face it we swing around on the pendulum of what the kids need and want and it's almost impossible to schedule anything with any definitive time line, it's inevitable that J2 is going to poop and need changing the minute I get his shoes and coat on).  And I would just appreciate time and what I did with it more.

But some time will come back and then I will be writing a blog reminiscing and rose tinting about the days and times life was unplanned, unscheduled and ad-hoc.  But hey, I'm a laaaaddddddyyyyy and that's my prerogative on Thoughtful Thursdays...

Wednesday, 2 November 2011

The Disability Diaries (The Life of J1) : Happy 8th Birthday to J1 (well almost)

A house full of equipment
Medicines locked away
I never dreamed of this for him
On his Birth Day

A perfect baby
Is what you dream
But after you leave hospital
Things aren't what they seem

It's Cerebral Palsy they tell you
Well, what's that you ask
It means he has brain damage
Your tears you try and mask

You can't change what happens in life
The challenges your lot will get
But no matter how hard you try
You still feel pain and regret

Regret you didn't speak up more
Ask more questions why
When the birth wasn't going perfectly
When things were going awry

Guilt that you worked too hard
That you should have put your feet up more
That you should have taken more notice 
When your tummy felt a little sore?

But all the why's and where's and who's
Doesn't give you the reason
You are told so many different things
People should be tried for treason

You just have to learn to accept
Life for your child will be hard
And you will have days you cry and cry
Because he'll never run around the school yard

But slowly the amazing resiliance of your baby
Starts to shine through
And you start to notice
All the things he CAN do

For he has already achieved
More than they ever said he would
And you stop looking at the 'Can't'
And think more about the 'Could'

And you suddenly have hope
For your little star
That one day
He will go far

For my little star - who I can't believe is going to be... 8!

By Lynsey Summers

Tuesday, 1 November 2011

Halloween Party Virgin No More

Happy Halloween, ok a day late but I started this yesterday to no avail!  Sunday we hosted our first ever Halloween Party.  Now as any parent knows, fitting party planning and preparation into an already full schedule of entertaining, looking after, feeding, bathing and generally making sure children are safe is no easy task.  So instead of intense planning and shopping for a week like I used to do pre-children, any event requires much notice so that this can be done over at least a span of a month.

On various daily walks we swung by the shops with the decorations, sweets and non perishable items and purchased a few each day (whatever could be fitted on the buggy and generally length of time in shops is determined by mood of J2 so usually visits are short and not-so-sweet).  The food list was written and revised several times over (as numbers attending swelled) and undertaken in two 'big' shops whilst J2 was at his nursery afternoon.  It bugs me to have to use the small amount of non-child free time I have to attack the shops but it was a needs must, either that or my visitors would have been offered dust bunnies as an entree.

As Hubby is still pretty much out of the equation due to recent surgery on the child care front, my mother stepped into save the day when the looming tasks of decorating the house, sorting the kids Halloween costumes, cooking food, displaying food and organising kids entertainment started to make me hyperventilate.  She undertook the 'scary in itself' task of looking after J2 (who I am not sure if it has just been this Halloween themed week that he has been adhering too but has pretty much become the incarnation of a little devil for 75% of every day - a.k.a approaching the terrible two's...) for a couple of consecutive afternoons and the morning of the do. 

All I can say 'In her we Thank'.  And my goodness I never knew Pumpkin Carving could be so therapeutic, I was quite pleased with my first attempts, however, having seen some friends 'creations' over the last few days on facebook, I have to say they made mine look like J2 had done them, but hey, I now know to raise my game next year!

Although at times I doubted myself, my relentless organising, list making, task arranging (which fanaticism when I get started on something can be annoying to others but essential to me) did come into their own and I got everything done, phew!  My family gathering certainly gathered the family from all over and everyone talked at 500 miles an hour to ensure all stories, rants and updates were given.  As the hostess I don't think you ever really get to catch up with people, you are too busy filling cups, whisking dirty plates away, restocking depleted crisps bowls, stopping the kids from getting tooooo over excited as their sugar intake hits new highs, but it was lovely to see my older relatives get to see the whole brood. 

The only part that made my stress levels hit screechy voice stakes was when 'our' (i.e.  'The Hubby's) 'surprise' of lighting wish lanterns for the kids nearly saw us setting fire to next door's brand new shed.  An abrupt halt was called on those.  My advice, take them to a beach when the wind is blowing out to sea

So in short, an exhausting but successful first Halloween Party, I can see why they are becoming more and more popular over here.  And top dibs to the kids that attended, they outdid themselves in the costume department!  But I have to be biased, my favourite was J2...

My very own little real life Pumpkin, and a cracking photo to keep for the 18th Birthday Board...WAHHHAAA HHHAAAAA HAAAAAAAA...