Dumfries

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Over the past year – #Family #Life

Published December 21, 2012 by mandzmagee

I’ve been sitting thinking back across the past year and well what a year it’s been!!

Stu and I have continued to grow and develop as a couple, yeah we’ve had our ups and downs but we’ve always been there for each other and no matter how difficult things have been we’ve supported each other through everything.  He’s an amazing person, I don’t know what I’d ever do without him.

Alisdair is forever turning into the young man, which is absolutely making me feel so old but I genuinely couldn’t be any more proud of him either.  He took his options for his GCSE’s at school and has stuck in doing really well at reaching target grades, well all except PE but lets be fair, it’s not everyone’s forte!  He spent the best part of 6 weeks in Europe with his Dad’s family living experiences I can only dream of and shared all of them with us when he got back, so proud of his photo’s and treasures that he bought along the way.  He goes with them every year for the summer holidays from school and it’s a long time to be away from him but hearing his stories and seeing how happy he is and sharing all the knowledge he’s gained it genuinely makes it such an amazing experience for us also!

Theo, well what can I say about him, every day he continues to strive, develop, surprise, frustrate, however most of all, make us smile!  His speech has absolutely came on, fair enough it may only be the people that’s around him every day that understands him but the progress has been amazing.  He’s grown in confidence in different situations, our holiday to Southerness for example, we were so worried that the change to his routine would have knocked him for six but he settled absolutely fine!  He didn’t care that he was away from home, he absolutely loved seeing his family that he hadn’t seen in years having remembered all of them and called them by name (in his “language”) without being prompted too!  He’s became more acceptant to playing with others and sharing his toys, which was a massive no-no this time last year!  On the whole it’s been a fantastic year for his progress and is ending the year as a happier and more confident, loving boy.

Alex, he too has developed massively, he’s genuinely such an intelligent child!  Having started year 1 at school his reading and imagination work has been truly unbelievable!  His confidence has been a little patchy but we’re working on that and have seen it grow and develop before our eyes too.  You’d swear that the little man has been here before!  He’s forever reminiscing about things we’ve all done together and relaying absolutely EVERY little detail about what’s happened, he’s like a walking diary for his life!  His Mammy is going to be having a baby in a few months and he’s never been more proud about going to have a little brother, it’s so lovely to see the pride in him telling our friends and family that he’s going to be a big brother.  It brings a tear to my eye every time!

Unfortunately it’s not all been high’s along the way this year, we lost a dear friend Jimmy within weeks of receiving a diagnosis of cancer in the stomach.  My Uncle Sandy to natural causes, I hadn’t seen him in such a long time but it absolutely hadn’t eased the pain of saying goodbye.  Then of course my Uncle Bill a couple of months later.  Uncle Bill went through a long ongoing struggle of alzheimer’s and other medical issues it was just a matter of time, again however, it doesn’t matter how long you’ve got to prepare yourself it doesn’t hurt any less.

Death may take away the person but nothing takes away the love and memories!

Over the years we’ve all lost friends, family and loved ones.  I absolutely believe we’ll see them again, and I know that this Christmas they’ll all be celebrating together and making sure that my Ickle Bubbs is having a fantastic time until we’re all together again.

I want to thank all of my family and friends for being there for me through out the year.  I love and appreciate you’s each in your own little ways!!

Stacey P – For seeming to always have a day off for bringing me back home from Dumfries!!  Coming down and keeping the friendship and bond with the family and me even with the miles between us!!

Kenty – Just for being you in general, you’re always the sensible one to talk too.  You make time for us when we need you and well our debates are always fantastic – we’ll always be able to agree to disagree after a few hours (and drinks!)  haha!!  You were my best friend down here before I even met ya!!

Lucy and John – You’ve also both been there for me since before I moved here, it’s ridiculous that we only live around the corner and never see each other.  I was so proud to have been invited to your wedding, the kids and you’s were so beautiful, it couldn’t have meant more to have been there to celebrate the day with you all!!

Tammy and Ecky – You’s are like my sisters and I love you’s unconditionally forever more.  You’s have dragged me out of the darkest of times and are always at the other end of the phone.  We just need to see each other more often!!

Jackson and Jasmine – Always my little miracles, growing up far too quickly and it doesn’t matter what you’s are going through I’m ALWAYS here for you’s!!  Just a phone call gets me there as soon as I can be!!

Kirsty –  I know we’re not in touch as much as we should be but with what we’ve been through in our lives together I simply can’t class you as anything less than a best friend.  Your friendship has always meant the world to me and again, we just need to see each other and keep in touch more often!  I have to admit tho, when we do get together it’s as if we’ve just picked up where we left it the last time!

Marion – I spent years wondering about you and I’m so pleased that you’ve been able to step back into our lives.  I don’t need to go into detail about how much it’s actually meant but you’ve helped so much you’d not believe!

If I’ve not mentioned you – well this is a big enough essay already haha!!  Those that I love and respect know it.

I wish you’s all a fantastic Christmas, a brilliant Hogmanay (you can take the girl outta Scotland, not Scotland out of the girl however haha!!) and all the best for a fantastic and magical 2013!!  Love and hugs to you all!!

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Theo’s Education #Autism

Published October 18, 2012 by mandzmagee

Before we moved to Washington Theo’s schooling was an absolute nightmare.  He was stuck in a mainstream school that had a Learning Centre that was for children with additional needs.  He had a one to one support worker called Mrs Herries, she was an angel with invisible wings!  He really took to her and stopped having anxiety attacks leaving me because he loved her company, she lifted such a massive weight off my shoulders it was unreal!  The head teacher of the Learning Centre however was her absolute opposite, I call her “The Battle Axe”, (I called her it to her face so I’m not being two faced!).  This woman wouldn’t accept help from Speech and Language Therapists, Occupational Therapists, Sleep Therapists, no one and nothing was up to her extended knowledge of children who were needing additional support.  Her idea of a school day was for Theo and his angel to go walks as soon as he showed signs of being stressed – normally this was spending five minutes in her company!).

The Battle Axe told me nothing other than “Theo will never do this”, “Theo will never accomplish that”, negative, negative, negative! The best line she ever came out with was “Miss Magee is such an incompetent mother, it’s the lack of parenting skills that has stunted his development.”, I couldn’t speak to her at the time, I couldn’t trust myself not to bite her head off and stick it where the sun didn’t shine!

He was only there for two years, then Stuart and I decided that we were moving to Washington, it was killing him being away from his son for as long after being used to seeing him every day.  When we made our decision that we were going to move my eyes were opened up to see what a different educational life Theo was going to have.

After we’d found a house and got all the moving dates sorted out we had a meeting education for both Ali and Theo was next on the agenda.  Alisdair was going up into secondary school – massive step for him that was coming several months early with the difference in the education systems in Scotland and England.  Alisdair was a bit nervous about it – he knew he wasn’t up to the same levels of learning because he was basically missing a year out.  He coped with the move fantastically though, the support that they were giving him for his Dyslexia was amazing in comparison with Scotland!

Theo on the other hand was going to be starting a specialist school for children on the Autistic Spectrum.  I met with the Head Teacher and his Class before he started and I was absolutely amazed at the school.  The head was very proud to tell me that the school was one of the top five in the country, I completely understood her pride!  I went onto be introduced to the Speech and Language Therapist and Occupational Therapist who were based at the school.  I had to double check that I’d heard that right and it was true, they were infact based at the school!  We’d only received a letter from SALT at the beginning of the school year to say that Theo was on a waiting list for SALT in Dumfries as he wasn’t a priority.  To actually have this support on site, every day he was at school, absolutely amazed me!

Theo’s class was fantastic, there was him and seven other children in his class.  One teacher and three – yes three learning assistants!  Each one of them were amazing, not one of them questioned Theo’s Autism, they were all filling in his home to school diary with all the positive things that he’d achieved, what they were going to be trying to do with him next, I genuinely couldn’t believe there wasn’t a system put into place like this in Dumfries with the amount of ASD children there is there!

The activities that the school were involved with amazed me too, horse riding every week, swimming every other term, football coaching from the professional coaches and players at Sunderland Athletic Football Club, just to name a few!!

Over the past three years both Theo and the school has completely blew me away.  Nothing is ever negative, I never hear what he wont achieve, I never hear what he’ll never be able to do.  If there is something that is becoming an issue the school consults with me then we as a team put a strategy together for to try and help him.

Today I received his school review and it’s been very tear jerking to read!  He’s made phenomenal progress, when I sit and compare the difference between the two schools where there’s only just over 100 miles between them it astounds me the differences.  Even the differences in him, he is now a much more confident little boy, has learned self calming techniques so he’s able to participate so much in other things that before were just never possible!  He’s truly amazed me and does so every day!

Keeping Faith

Published September 23, 2012 by mandzmagee

Five years ago September 3rd at 6:16am I gave birth to a beautiful little girl who I called Faith.  I have to admit I don’t really follow my religion so she wasn’t named that for any religious belief, I called her Faith because I was always going to believe in her.

Good Friday 2007 I found out that I was pregnant with Faith when I went to an ultra sound appointment because I had possible polycystic ovaries, my periods were all over the place (or so I thought), I was bleeding really erratically – you could imagine my surprise when the screen was turned to me to see a little life of 15 weeks infront of my eyes!

I was taken straight away to a side room after having the ultrasound and receiving my picture where I was informed that this little baby inside me had a life threatening condition, even as small as 15 weeks they were able to tell me about her Congenital Diaphragmatic Hernia.  My mind warped, I wasn’t expecting to be told that I was pregnant never mind the fact that this child had a life threatening condition.  The midwife went on to tell me all about CDH, however no matter how long she kept talking I was taking very little in – I was just in absolute amazement at the little picture that I was staring at!  I managed to remember that there was a 70% chance that the baby would have a chance at life and I had to make my decision as quickly as possible if I wanted to keep her.

I left the hospital and went to my parents to pick up Theo then went over to call my cousin – You’ve no idea how much I appreciated the fact that she got finished work early on a Friday.  We took the kids out to a local forest and i told her everything I remembered.  I actually think that she was more shocked than I was, I’d already made my decision at that point of time that I was going to be keeping the baby, she’d made it those 15 weeks – I couldn’t not give her a chance at life!!

What CDH means is that she had a hernia in her diaphragm on the left side which was allowing her organs from below raise up into her chest causing troubles for her upper organs to grow and develop naturally.  Her right lung had grown but not to capacity that it should have been, her left lung had stopped growing and her heart had been pushed over to the right side of her chest, consequently it hadn’t developed as much as it should have either but it was still beating strongly!  If you’d like to know more about CDH please look here http://www.cdhuk.co.uk/

The following few months were like the biggest roller coaster that I’d ever been on.  Trips to Dumfries to Glasgow, constant hospital monitoring appointments, constant Dumfries hospital appointments, diabetes going higher and lower, developing pubic symphysis, the stress of not knowing of what the end result was going to be among all Theo’s appointments with different health professionals, social workers, setting up respite for to be able to give birth in Glasgow as no one was able to take on his care in the family, him going through his self harming stage, trying to make sure that Ali understood everything that could possibly happen.

My care plan was put together, I was going to give birth in Yorkhill Hospital for Sick Kids in Glasgow, it was going to be a natural birth as that’s best for babies with CDH, She’d then be taken up to the ward and I’d be residing in the Ronald McDonalds House across the road from the hospital.

Well when she decided that her wait to show face was over she kept everything true to form.  She arrived at 36 weeks, my waters broke at stupid o’clock in the morning and I was too far dilated to get to Glasgow. On arrival to the birthing suite I took a funny turn at the exact same time as Madam – I completely passed out, nursing staff struggling to bring me back round, they lost all Faith’s stats at the same time.  When I woke up I was surrounded by a team of 9 midwifes and 3 doctors.

Needless to say I wasn’t travelling to the hospital that she was supposed to be born in, this terrified me as I knew that all the staff and care equipment that she was depending on having immediately at birth was 100 miles away!  I was told that I was having a C-Section just in case I developed any more problems as I had just had.

Arriving into the theater where she was to be born I was introduced to the surgeon who was going to be carrying out the procedure.  .

“Hello there Miss Magee, My name is Dr *We’ll leave this bit blank*, I’m going to be carrying out the operation, have you chosen a name for your daughter” then he paused “Oh I mean baby, sorry do you know the sex?”

Well was a bit late if I didn’t wasn’t it!!

“Yes Dr *WLTBB*, you’ll be pleased to know and her name is Faith”

“A beautiful name Miss Magee, I really recognize your face should I?”

“Well does the name Theorathamos P S mean anything to you?”

“Ah, I see Miss Magee, it really is lovely to see you again, I’ll go get organised while you get your epidural”.  He genuinely couldn’t get away any sooner than he did on finding out how he recognized me.  Three years previously he told me my son had ADHD, went on to ask me if I would like to have Ritalin after spending no longer than 10 minutes in his company.  After the complaint was lodged he was taken away from the child development centre and well – apparently he was now dealing with babies births – Great!

“It is lovely to see you Doctor, in a twisted bout of fate I suppose you’re the one person that can genuinely tell me that they’ll make no mistakes and do their best to keep her alive”

Yup the look on his face was priceless but I was terrified and full of dia-morphine and lets be fair – anyone that knows me knows that I’m not backwards at coming forwards!

As the whole procedure was being carried out I lay and spoke to a male nurse the entire time about my Youth Work and Autism.  He was a lovely guy, I must point out now it wasn’t an intentional conversation for this Doctor – the guy was really interested about my experiences with it because his nephew also was under the Autism spectrum.

Mid conversation all of a sudden he said “6:15, sorry no 6:16!” I looked at him bewildered “Faith’s time of birth.”

I turned to look in the opposite direction to see the surgeon rush out of the room with her, I was prepared for this, I was told that was the way that it was going to happen.  The nursing staff respectfully let me just sit quiet and dwell on my nervousness, I didn’t want to speak to anyone until i knew that she’d at least survived the birth.  about 15 minutes later the doctor came back to me and let me know that she’d successfully been put onto the ventilator and as soon as I’d recovered from the epidural they’d take me through to see her.

My mother arrived with my two cousins Tammy and Erica to support me through going to see her and spend time with me before I was going to be setting off for Glasgow to be with her, as soon as I’d seen her she was leaving pretty much straight away so that the specialists could care for her and arrange her operation to fix the hernia.

She was the most precious, beautiful little girl I’d ever set eyes on, of course i’m totally biased tho lol.  I was a bit freaked out by all the wires and ventilator but i knew it was essential, I couldn’t hold her as she was too fragile but I didn’t mind because i knew that in a few hours I was going to be by her bedside able to talk to her and stroke her hand.

Or so I thought …

At lunch time I’d been told that she’d arrived there safely and once all my post operation checks had been sorted out i’d be supplied with an ambulance to take me to Glasgow.  I sat up to eat my lunch and all of a sudden my bed was soaked in blood, over the hours to come I’d developed pains in my shoulders and my ribs and 36 hours later I was having surgery because I’d began bleeding internally from the damned polycystic ovary!!  I spent 4 days trying to get over two operations, fretting about Faith’s tightrope of a lifeline she had and on the Friday when I got told that she was going to the operating theater to have the hernia fixed I decided that I was going to move hell and high water to get there to be with her.

Against the doctors advice I got to Glasgow by 5:30pm for her getting back to the ward and settled in.

I went up to the ward with one of the nurses from the Queen Mum’s. When I got into the room that Faith was in I couldn’t help myself but break down. That little girl was laid out on her bed looking as if she was taking fits (it was just the type of ventilator she was on tho!). “What the hell have i done to her” I asked Carl Davis. “Given her the chance to live” he replied.

He went on to explain about the ECMO machine and how Faith had to go onto it to give her lungs a chance to develop. They wanted to put a fluid into her lungs to try and let them grow and develop as they were very condensed by her stomach, liver and bowel in her chest cavity.

I went back over to the Queen Mum’s and waited on them putting her onto ECMO and the doctors coming over to talk to me about everything since i had such a lot to take in. Tammy, Erica and Aunt June came up to make sure I was alright following a call from the hospital asking them to come and stay the night.

Erica stayed the weekend with me and supported me with everything. I stayed in the queen mothers for 5 days then finally got discharged. I went to stay in Ronald McDonalds, the parent accomodation across the way.

Daily I’d spend hours with Faith, her ups and downs with her health was just like that rollercoaster i mentioned earlier.  The fluids they were using to try and expand her lungs wasn’t working efficiently so they decided to try her off the ECMO machine and going onto Kidney Dialysis.

All the time she was on ECMO she maybe looked puffy but she always looked a picture of health. It’s so deluding how healthy they can look when it’s the inside that’s not working.  I got told she had less than a 50% chance to come off ECMO because of the capacity of her heart but she turned that around n was able to come off … again … less than 24 hours later … fair enough she went back onto it but she still got off it!!

The second time that she was back on it they were talkin about her future plans … they wanted to move her into another ward … PICU where they could give her 24 hour kidney dialysis instead of 12 hour kidney dialysis. This was scary but such a vital thing to happen.

She moved through there and within a few days they wanted to try taking her off her kidney dialysis again, they tried twice on the Friday morning and she almost slipped away both times, however they topped up her fluids and gave her a dose of steroids and she was fighting again. Third time lucky!!

Kidney dialysis was working fine … she was running at negative levels for the first time in her life (which amazed everyone as she always liked to be a little positive!).  Then she caught an infection … blood cultures showed that she was sensitive to a couple of the medicines that they’d been giving her.  They started giving her antibiotics and fight against the infection.

In the mean time she was struggling to maintain a temprature, her bowels hadn’t moved in several days and on Tuesday 30th October she took a cardiac arrest in the morning.  The doctors asked me to attend a meeting in the afternoon to discuss the plans for Faith and they asked me if they could switch her machines off as it was getting harder and harder for her to fight and they’d nothing more that they were able to do to try and help her, they’d tried other specialists all around the world to see if there was something that could possibly be a solution but everything had been done.  As much as I was devastated that I had to make this decision I knew that without all the machinery she’d not be there.  If I was to tell them that I wasn’t going to switch off the machines I’d be prolonging her pain and making her worse.  They had my consent.

Tammy and my mother came up the road and was there when Faith passed over. My first longed for cuddle was my last one, but at least she got to pass in my arms and feel my warmth and love toward her.  Tammy sang to her, I think that was to stop her crying but she did so well and it stopped all of us from crying.  Faith fought on for a very surprising length of time after all the machines were switched off.

She did herself proud!

After she passed I got to bath her and get her dressed into her clothes, she looked so beautiful, so peaceful, there was no cables or wires coming from her little body.  She ended up with glitter on her … I’ve no idea where it came from but I certainly feel it’s just like angel dust.  My little angel was taken away at 6:15pm I left her at 9:45pm.  I spent my time with her giving her the cuddles she deserved so that she knew that she was loved.

Even tho Faith was only here for a short time, she’s had a massive impact on many other peoples lives.  She certainly changed me for the better!!

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