Tuesday, 26 March 2013

Learning to live another way - www.giftsforangels.co.uk

It has now been 7 years since My daughter Lola died, I am learning to live a different way. I say different because after loosing your child you will never be the same again and your life has to change. I have become harsher, less tolerant of people, and much more cynical. I remember thinking, "Why me?" in actual fact I really should be asking, "Why Not Me?", Death discriminates against no one, it has no pattern. Its like a tornado,  it can come without warning destroying everything in its  path and once its gone it leaves you with unimaginable devastation. In 7 years I am still broken, still in shock and I still miss her in my daily life. Of course I miss Her, but what I mean is when I'm leaving the house or a  place where I am gathering up my other 3 children I still take a moment to check I have them all. I get a huge sense that I have left one or forgotten one. Even though my last 2 children were born after Lola's death I still feel a massive empty space. The pain never leaves and that suites me, its a constant reminder of what I have lost.
 I think the fact that John and I seem very together and fine to the outside world, must make people think we are unbelievably strong, hence the......,
"I don't know how you do it" and
"You two are truly amazing!" comments,

 Firstly I don't remember being given a choice and secondly we have 3 other children 7yrs, 5yrs and 2yrs so we have no option but to be outwardly happy and together and let me tell you this in itself is exhausting, but I don't want to give my kids even a glimpse of our sadness. Its bad enough that they have to be touched by death at such a young age. We speak about Lola all the time and she is very much a part of our family. We send up balloons on her Birthday but we try to keep the anniversary of her death away from them that is why its better to be around other people, the people that shared our loss, the people that loved her like we did, the people that carried us through those first few debilitating days, weeks & months. Being alone is just too hard.

Lola with her Big Cousin "Shaun", she really adored him.
 The tattoo Shaun had on his 18th Birthday.

Thursday, 21 March 2013

Lola's story 6 www.giftsforangels.co.uk

The surgeon Mr Selway, came to see me with what looked like an xray picture, it was in fact the picture from the brain scan. He held it up over a light box and there it was, covering the right side of her brain, it just looked like a dark shadow.  I was now face to face with this "thing" this "Tumour" that was causing us all so much pain. I felt numb, I was on my own at this point and I new there were at least 20 questions I should be asking, information I needed to have and to pass on to John, but all I could do was just stand there nod and stare at this abhorrent thing. He explained that they would have to operate to remove it in the morning and that I should try and get some rest tonight!
I sat down beside my Angel who was still unconscious and started to explain that when she was better Mummy was going to buy her the "Fifi" house that she wanted so desperately and the "Wiggles guitar". I think it was at this point that the terror and fear set in and I think for the first time since it had all started the possible reality hit me, I felt phsically sick and I immediately put the thought out of my head.
"She's going to be fine" I said out loud to myself! John had arrived with his two brothers and I was back to being strong and positive. He wanted to know why they were operating in the morning and not immediately (one of the 20 questions I did not ask!). His brother's left to pick up the rest of the family and were planning to return the next day. The nurses were wonderful, and advised us to go and get something to eat and have a break, we were reluctant but left for a short time. Withing 10 minutes of us leaving our mobile rang... we rushed back to the ward where there were a lot of people around Lola, preparing her for surgery.
"Lola's had a bleed to the brain, we need to operate now!" said someone.
Within minutes she was being taken to theatre, and we were left in the corridor watching her being wheeled away.......
We were shown to a tiny room with two beds, we lay there for a while until John spoke,
"Shall we pray?" he asked. We were desperate, John although been raised a catholic, was in fact an atheist.
We got down on our knees held hands and prayed, prayed so hard and begged God. We would be better, go to church, anything... just make her well.
My Sisters and Brother-in Law arrived at this point it must have been early hours of the morning and they just sat with us waiting. Some hours later the young surgeon, who had taken Lola down, wheeled her back. I noticed the blood on his shoes and I  looked at him with that same desperate star I used in Worthing.
"She's critical", he said. At this point his mobile rang , "Yeah, alright Mate I'll be there in a minute!" he said in a loud and matter-a-fact way. Now, I don't know who was on the phone, it may have been another surgeon calling him to do yet another life saving op, or maybe it was his 'mate' that was waiting for him in the pub. Either way, his complete lack of respect and empathy to Lola, myself and John infuriates me to this day.
We stayed close to Lola, who lay still with a very large plaster over the top of her head. We were scared but hopeful when a lady Dr approached us and explained that Lola would need a great deal of care and recovery time, they weren't exactly sure what type of Tumour it was but if it was what she thought we needed to prepare ourselves for the long road ahead. Well I was just pleased that there would be a road ahead, but some time later that morning we were sat in front of this same DR, Mr Selway the surgeon and a nurse (I think!) it was at this point that they told us, Lola's brain was dead, the only thing keeping her alive was the machines. It is impossible to relay my feelings to you..... even now when I close my eyes and think of that moment my body is numb and I shake myself out of it, I still can not face that moment.
They moved Lola into her own private room, most of the family had arrived now. I remember being in the bathroom, I had to be alone, the pain was so horrendous I could not stand.....
"I don't know what to do, Lola" I said out loud, I felt a warmth around me for maybe 2 seconds I may have imagined this but I just knew she was gone.... That night with all her family around her she was given the last rites. They all kissed her goodbye and left Us alone with our Darling Girl. I held her in my arms as they turned off the machine her little heart was still beating I passed her to John and Lola left this world the same way she had entered it, in the arms of her ever loving Daddy.

It was 7 years today that Lola died and our Love for her will never change, she will always be a huge part of our family. To all those of you that have lost your loved ones, I send you my deepest sympathy and I wish you strength on you journey ahead.

Tuesday, 19 March 2013

Lola's story 5 www.giftsforangels.co.uk

We had just  been told that our precious daughter had a brain tumour, I had completely gone to pieces. We were then shown into a tiny room to make the necessary phone calls etc and it was at this point that John completely broke down... He fell to the floor with his head in his hands this is when I came to understand the  term "inner strength"!.... I was now kneeling in front of him, telling him that everything was going to be alright, and that these days surgeons could do anything. I was holding it together as John and my sister sobbed. I remember vaguely ringing my mum and dad who were is Spain on holiday, explaining to them and reassuring them that everything was going to be fine.
"Pray for her," I said pulling on my some what distant faith.
Lola and I were then in an ambulance on our way to "Kings College Hospital" in London. Only one of us could go in the ambulance. I sat in there, flashing lights,sirens and all, my Perfect little Girl laying next to me, unaware and helpless, I don't no what I was thinking or feeling it was a mixture of terror, disbelief, shock and desperation. How could this be happening to me ? A question I used to ask a lot, why me ?
We arrived in London in no time at all, there were people there waiting to greet us & we were rushed up to the "Mount Batten" ward on the 10th floor. I remember there were other children in this ward with their parents. After they had finished plugging & hooking My Lola in to various machines I sat next to her stroking her hair and whispering into her ear her favourite story " Goldilocks and the three Bears". After I finished I could hear her little voice in my head saying
"Again, again Mummy".... Like she always use to.
I then sang her the song I had been signing to her since she was born, "You are My Sunshine"...
As I got to the last line of this song the tears started to fall as I slowly sung the last few words......
"please don't take my Sunshine away"..... I have never been able to sing this song again.http://www.giftsforangels.co.uk

Wednesday, 13 March 2013

Lola's story - 4 www.giftsforangels.co.uk

So we were still in accident and emergency at Worthing hospital, by this stage I was clearly in shock and utter disbelief that it had now been some time and yet these professionals were still non the wiser into what was wrong with My Baby.... They had called over a pediatric Dr from the main hospital they had cut off her old H&M top and she now had even more machines around her. There was a mention at this stage of "Menengitis" to the brain, which sent me into a mad panic and I broke down on the phone to my Sister-in-law, "Tracey".... Who was on her way to collect Ava for me. I remember   Her taking Ava and me just telling her to ring around and let the family know. We were then moved into a tiny room somewhere upstairs and here we were left alone just John myself & our Gorgeous Little Girl.... It can't have been long, but I remember the silence as we sat either side of her ... There were no words to exchange, we were both just trying to comprehend the last few hours, how did we get here? So helpless to the fate off our first born baby? Drs & nurses came and went giving us the snippets of information they could, but it was quite clear they were still unsure. My sister, "Francoise" had arrived by this point in tears of worry and so now there were three of us here in silence... The pediatric Dr came back and explained that they were still unsure, and that we would have to go to London, but first they wanted to give Lola a brain scan. As they prepped her to be moved  my mind was blank, I held her hand as she was wheeled down corridors and into the room where the scan was to take place. We were asked to wait outside and it seemed like hours but in reality it must have been more like 20-30 minutes. When the doors eventually opened I looked straight at the Person in charge. He was standing at the head of Lola's bed and my eyes met his, I could feel the desperation of my stare. He looked away..... This spoke volumes to me and I couldn't help but ask,
"Well was everything ok?".....
" We'll speak upstairs," Was the response, his eyes fixed on the floor.
This terrified me, and I new then that there was a major problem, but nothing was to prepare me for the next sentence....

"Lola, has a very large brain tumour covering the right side of her brain".

I wish I could describe to you the strength at which these words hit me, but that would be impossible. I  was sitting down yet I felt like I was falling uncontrollably . My heart stopped and the tears started
streaming, I felt like I was screaming or trying to but http://www.giftsforangels.co.uknothing would come out. I could feel John's arms holding me tight as if to keep my body together.... I was falling apart....... My life was never going to be the same again.....

Thursday, 7 March 2013

Lola's story 3 www.giftsforangels.co.uk

http://www.giftsforangels.co.ukI do apologise for the late blog post this week, but we have been experiencing Internet connection problems.
I left off last week ranting on a bit about the last GP visit which took place on Monday 20th March 2006. The rest of the day Lola slept a lot, and occasionally complained of a head ache, this was put down to the lack of fluids and dehydration. John got home from work that evening and carried Lola up to our bed to watch a "Pepper Pig" DVD, which she was thrilled about, but soon fell asleep. Lola remained in our bed that night and it must have been the early hours of the morning when she suddenly became full of life! Jumping around singing and making siren noises! I presumed she was better and now wide awake as she had had too much sleep. So, and I hate myself for this next bit - but I got very cross with her and insisted she go back to sleep because, Mummy was very tired still. John took her into the spare room, and although she was still demanding "Mummy" , he managed to get her to sleep eventually. I went happily back into a deep, deep slumber thinking that all was well with my world.
As he had such a late night John decided to stay off work the next day. Lola was on the sofa eating a boiled egg, (the first thing she had eaten in ages) Ava was crawling around on the floor in front of us. "Noddy" had just finished on cebeebies and I was doing an impression of "Policeman Plod", who for those of you that don't know he raises one arm in front of him and says in a very large booming voice, "STOP in the name of PLOD", Lola copied me still from her sofa position and it made me laugh. John and I looked at our little girls with total ore,
"How lucky we are to have such healthy, perfect children" he said and I couldn't have agreed more as I sat next to Lola and gave her a little squeeze. Within minutes her eyes looked glazed and fixed, and her tiny little hands had started to tremble, very gently. I called over to John,
"This looks like a fit," I said very calmly. John jumped up and said that we were going straight to the hospital he rushed up to get dressed while I stayed with Lola, who was not responding to me, her eyes still fixed on one point. John placed her in my arms in the car, where she closed her eyes and I held her tightly. I remember the car ride very clearly,I was calm and positive, she was fine it really wasn't anything major. I know that might sound mad to another Parent reading this, but I was always the optimist and still very much on the mindset of "It won't happen to me!"
We got to Worthing hospital, Lola was still asleep and John carried her in his arms while I carried Ava. We were seen immediately, they kept trying to wake her, but she did not respond, but when they were putting her on various machines and injecting her I could see her tense with pain, so she was awake just not fully. They asked me to have a go and I remember saying,
"Ooh look Lola, Fifi is here.... and Mummy's going to buy you the wiggles guitar, if you wake up now"... nothing, then John tried, he used a very different tactic.
"Now Lola, Daddy will get angry with you, come on now" he said in his angry voice, this caused more of a reaction than my approach, just like with the injections you could see her move a little in response but she still did not wake up fully. Every now and then instead of the gentle tremor she had at home, her body would tense up and slightly twist to one side. The hospital staff confirmed it was in fact a seizure but they still did not know what was causing it. At this point, my still positive, naive or maybe even stupid mind was calm... I even thought if its epilepsy, that's OK it wont hold her back, she won't be able to become a flight attendant!
"Flight attendant...." what the hell was I on?.... I am telling you the truth, you just never expect anything bad to happen to you, especially not your children! I had no great aspiration for my child to become a flight attendant and yet here she was lying in a hospital bed hooked up to every machine you could think off with Doctors, nurses rushing around her and I'm thinking about what career choice she may or my not have!!!!!!