Kayleigh 'Kayles' Welburn (1988

The One and Only

Kay I felt that I could say
How much you are missed every day
Even though I wasn't there
Doesn't mean that I don't care

I felt as if I 'velost a bit
A bit of me from deep inside
That family feeling which doesn't hide
The sadness that you've left behind

We now believe you're safe and sound
And now believe you have finally found
The peace you deserve for ever more
You've finally won your personal war

The illness you had was too big to fight
Yet you proved people wrong and with all your might
You fought for years and had a blast
Now go and have a rest at last

We'll meet again in years to come
We'll catch up on all the fun
We had in lives and in the sun
You've done all you can. You've won

Every year on this day
We will celebrate and pray
For you have gone
Where eagles fly and doves sing songs
Where harmony lives
In the great beyond

Written in Kayles' memory by her cousin, Abi.

Our angel,Kayles Marie Welburn was born in Peterborough on Wednesday 28th December 1988 and passed away on Galaxy Ward, UCLH, London, Tuesday 4th January 2005 aged 16. Kayles, as she became known during her later life, was born very prematurely at 23 weeks in Peterborough. After spending 3 months in the Special Care Baby Unit, she was transferred to Great Ormond Street Children's Hospital in London as she was not able to breathe without a ventilator. It was discovered here that she had a disease called papillomatosis, which meant her airways became blocked with wart like lesions. She had a tracheostomy put in her neck, to breathe through when she was 5 months old. My little girl spent the first two years of her life in Great Ormond Street, only coming home for short (1 or 2 days) spells. She was a favourite on the ward and having began life as a very stroppy and moody baby, became an extremely happy go lucky girl. It was on Peter Pan Ward, GOS that we met Carmel Mullen who became Kayles' Godmother when she was 3. Kayles spent many, many years in and out of hospital, going through very bad patches, and enjoying some brief interludes of relative good health. At one time she was even well enough to ride a bike - something she enjoyed immensely. However, her life was always blighted by her airway problems and on top of her laser treatment, under general anaesthetic every 2-3 weeks in the early days, and toward the end of her life every 8 weeks, she also suffered from regular chest infections, which seriously damaged her already degenerated lungs.

Over the years, we had many, many fun times - her sister Alex was born in 1990 and they were extremely close. We enjoyed huge amounts of family time together. I was a single parent until 4 years ago, so we were a very close knit unit. Some of our favourite things when the girls were smaller were going to Victoria Park, sharing the one bike we possessed, feeding the ducks (although Kayles was petrified of them and would hang well back), paddling pool at said park in the summer, Covent Garden in the summer, playing cafe's in the kitchen, making houses in the front room, watching Rod, Jane and Freddy (worrying if any of you remember this!) and of course the girls having their friends over. One time springs to mind particularly - I was quite protective of my little girls and wouldn't allow them to play outside with the local 'riff raff'!!! So they would sit at Alex' bedroom window watching the kids play outside (it sounds so much worse than it was!) Alex came down to me crying that Kayles had burned her with the lamp's bulb - on further questioning, it transpired that they had wondered how hot it was, so Kayles answered the question by placing it on her sister's arm! Ten minutes later Kayles came down crying because Alex had convinced her that it was only fair and right that she be allowed to return the favour and burn her back!!! They were quite a worry at times!

During this time, Kayles would be in and out of hospital. Eventually when Kayles was around 10 she started needing oxygen overnight, and this really was the very beginning of her descent. I had always been told that Kayles would never live for too long due to the continuing damage to her lungs, she had surpassed anybody's expectations of her life expectancy - year after year she amazed everyone with her fight to live. Shortly after oxygen being required overnight (which now meant it was very difficult for us to go anywhere overnight), she also required a tube inserting in her nose to give extra feeds as she wasn't eating very much - eventually having a permanent one in her stomach as it became obvious that she would never eat enough to sustain her. Over the last few years of her life she became more and more oxygen dependent, requiring it during the day as
well, having a portacath inserted under her skin for access to her main artery to her heart for IV drugs due to the frequency of chest infections, and finally during the last summer, a ventilator for overnight. The last few weeks of Kayles' life meant she was restricted to this equipment even during the day. Over the last 6 months of her life, Kayles spent much of her time in hospital, suffering pain and breathing difficulties on a daily basis and vomiting the majority of what was fed into her. This was not a life Kayles was enjoying, she deserved better and finally when she died on Tuesday 4th January 2005, it was a blessing. She had suffered physically for most of her life and had well over 600 operations in her life. My brave little angel was gone. However, I don't want to remember her like this - ill, wheelchairs, oxygen, equipment, pain - I want to remember my girl and the life she had in her - she was such a lively little thing, and I know where she is now she will be making the most of her new found energy, working lungs and sturdy body. I want you to remember the positivity of my daughter - those who never met her, but especially those who did. Kayles would have a smile and a question for anyone who walked through her door - from the top consultant to the domestic. Kayles didn't judge by appearance or status - she was truly a person who did not possess a single bad bone. She was well known for her interrogation techniques and the way she lulled you into conversation without you even knowing it - I'm sure she has taken a good few secrets with her!

Godmother
As her Godmother, Carmel often said, Kayles would know your bra size within 10 minutes of meeting you! It usually fell to Carmel the task of explaining the likes of why blind people couldn't drive to Kayles! Kayles and Carmel were extremely close - in fact, Carmie was like a second mother to Kayles and I know she misses Kayles every second of every day the same as I do. To Carmie - we are forever grateful and thankful that you were in Kayles life and looked after her the way you did - it was plain to see how much you adored each other.

Norm the Nag!

When Kayles was 13, I met Norman who quickly ensconsed himself in our home and hearts! Norm gave Kayles one of the most precious gifts he could have given her - some independence and self-sufficiency. If it wasn't for Norm, I would have mollycoddled her for her entire life. Norm made her do things like washing up, which it has to be said, did not go down exactly well for a while - in fact, she was very affronted when he suggested that she perhaps should pick up her snotty tissues and cotton wool buds off the floor and put them in the bin!! It has to be said though, after an initial duel at dawn, they became very, very close and had a unique relationship which even Kayles would have to admit to cherishing! Norm is forever known in our house now as Norm the Nag. It came to light fairly recently that Norm even allowed Kayles to drive our car! I being the unassuming sensible adult, thought when this was told to me initially during a slip up in one of their conversations, that Kayles had sat in the passenger seat and held the steering wheel for a short time. But no, it was exactly as was said - Kayles drove the car. I mean really drove it - as in sat in the drivers seat and went down the road!! Norm to this day says that he couldn't resist letting her do it - knowing her life was not going to see her into old age, he felt 'obliged' to let her experience this. So, may I now take the opportunity to apologise to anyone whose car was parked on that particular street that night?!......

Music
Kayles loved her rap and r n b - Eminem,

Ludacris

, Usher (was 'Da Man'!) etc. She never did the 'pop' thing (well apart from S Club 7 - sorry Kayles!) and was often found in later years at home with Norm in our bedroom listening to a CD blasting out. Education I think they called this! Norm certainly encouraged her to play her music good and loud!!!

Lil' Bro'

One of Kayles best moments was her little brother Jules being born in 2003 - she loved him so much and had always wanted a little brother, although he quickly grew into an unmanageable terror and far too heavy for Kayles to manage. She would have been proud because shortly after her death, Jules said her name for the first time. He blows kisses to her photo every time he sees it and knows that whenever he sees a little white feather that it's a present left for us by his big sister. I hope wherever she is, she can see him. I intend to buy Jules his first pair of Nikes with the money that Kayles had left in her bank account when she passed. She was forever threatening to bling him up when he was older as well, but I think we'll not honour that one!! One of Kayles great disappointments in life was that she did not have afro hair - she would have loved to do Jules hair now he is growing up and has an unruly mass of perfect ringlets!

Hospital
Time spent in hospital would often result in debates with various nurses as to which artist was 'buff'
Usher

or 'butters',

and she was forever getting CD's burned for her by both nurses and doctors! Although Kayles did not have many close friends her own age (kids that age are off doing their own thing and Kayles simply could not keep up with them, and couldn't go out unattended) she was very popular and had a great many people who respected and loved her - especially amongst the younger nurses, who became very good friends with her. She did not believe in going to bed before 2am in hospital - way too much gossiping to be had, although I did try to enforce this (not very well) from time to time! Kayles, needless to say had her own ideas. One thing that has become apparent to me over the last few weeks is that our little girl was so popular on the ward. A lot of the tributes are left by nurses and doctors, yet all of them have called themselves her friend. How true this is. Thank you to each and every one of you.

Holiday

Kayles dream was to have a sunshine holiday - something that was extremely difficult due to the amount of equipment she required and her ever deteriorating condition. Eventually, thanks to Sharon and Jane and everyone at Rays of Sunshine, this was granted. Kayles, despite becoming weaker and weaker thoroughly enjoyed herself and developed a passion for crazy golf and subjected us to many games. We treasure these memories. Kayles features on www.raysofsunshine.org.uk although the webpage is not yet finished. Click on wishes fulfilled, and you will see our little girl there.

Last Goodbyes

Kayles' 16th birthday was on a Tuesday and we had planned a big party for her. Knowing that her life couldn't go on too much longer, I told Kayles we would celebrate her 16th birthday party in style. She chose a 'bling' theme - and duly sent out invites. We did think about hiring a hall for her party, but due to the unpredictable nature of Kayles' illness, which meant she could be desperately ill at any time, we decided to have it at home instead, where equipment, oxygen and drugs were more easily accessible. On the day itself, Kayles was up and ready - she was exhausted as the photos showed.

I managed to find some clothes trendy enough and small enough to fit her tiny frame, and bought her new jewellery to wear - bling enough for a true star! We decorated the front room of our house in true bling style - gold and silver everywhere, posters of all her favourite artists - Eminem, Busta Rhymes, TuPac, Usher, etc etc. We even made up some bling necklaces and bracelets for those who arrived unsuitably dressed!

I had not anticipated the kindness of our friends. The ward clerk from Galaxy, UCH had a banner made up for Kayles - massive with Kayles 16th Birthday on it - with champagne and bling to boot. Av, our friend had arranged for her sister, a baker, to make a cake.

Carmel, Kayles' wonderful Godmother brought half of her kitchen and organised the food with me.

I had also not anticipated how many friends Kayles had. People we had not seen for a while, people who had miles upon miles to travel, true true friends of Kayles and us, they all came to celebrate in Kayles' special day. I lost count of how many nurses, from GOS Peter Pan Ward (where Kayles spent a huge time before she was transferred to Galaxy Ward, UCH), UCH and the community came. I was brought to tears by the kindness shown to her and I know that everyone at her party that day loved and respected Kayles because of the person she was.

I was so busy rushing round that day that I didn't get to spend too much time with my little girl, not that I could have got near her anyway!! One by one all of Kayles' guests spent time with her - it tore at my heart seeing my little girl surrounded by her friends and family, knowing that she wouldn't have much longer left with us. Carmel made a lovely speech which just about finished me off, but we kept brave with a smile on our faces, a bittersweet day. At the end of the day (which had seen some of the best people crammed in our little front room!) we were all exhausted. Thank you to each and everyone of you who took the time to come and spend time with Kayles on her day. To her good friends Nix and Nina who couldn't make it - I know your thoughts were with her - she was so sad you couldn't be there, but of course being Kayles understood why.

At the end of the evening, I sat with Kayles and spent some time with her, chatting about the day and looking at her beautiful presents - of which there were many. I didn't know that this was the last time I would spend with my lovely girl at home. We believe that Kayles hung on for her birthday to say goodbye to everyone. This was the last time most people saw Kayles.

Kayles woke up on the morning after her birthday and was desperately ill and barely conscious. We rushed to the hospital by ambulance (a common occurrence) and a mothers instinct told me that this would be Kayles last journey.

I was right. Kayles' life ended exactly one week after her birthday with Norm and Carmel at her side. I couldn't bear to watch her leave and had to wait in a room up the corridoor. I still don't know if this was the right thing to do, but I couldn't do this last thing for my precious daughter. As I waited in that cold room on my own, I prayed so hard for God to take her, for my brother Chris (who died 5 years before Kayles) to come and meet her. It struck me as odd that after all these years of praying for her to fight and stay alive, I was now praying for her to give up and die. This is the hardest thing I've ever done. I will be forever thankful that the two closest people to Kayles other than me were with her when she passed. Carmel and Norm stayed with her all night, holding her hands and talking to her, telling her they loved her, letting her go. They told me afterwards that right before she took her last breath she turned her head and looked at them both, one each side of her bed. Norm's first words to me were 'your baby's flown'. How true that was. Free at last. When I went to see her, she looked at peace - for the first time in ages, her little chest wasn't heaving and struggling for breath. My baby had indeed flown. I was relieved that her suffering was finally over, but heartbroken I had to live the rest of my life without my lovely strong firstborn by my side.

We held Kayles' funeral 2 weeks after her death. I wore the same clothes I had worn for her party and asked everybody who came to wear bright clothes. I don't even know how many people came to celebrate Kayles' life that day and say their goodbyes - I do know however that everyone there was heartbroken to say goodbye to the bravest little girl they had ever known.

Kayles' body was cremated and we have her urn at home with us - eventually we will put it in a plantar and have it in the garden, a quiet place where we can remember her.

I could go on forever, it is so hard to fit a lifetime into one page, and my daughter did have a lifetime. Some people live to 90 and don't ever achieve the love, respect and happiness my daughter did. Kayles was rarely seen without a smile on her face. She lit up every room she was in. Considering she had such a little body, she had a huge personality. Kayles was the funniest, brightest, warmest person I have ever known, I'm obviously biased but I didn't call her my angel for nothing.

God Bless my angel.

Always a part of our family
We love you and miss you and will see you up there.

Thank you so much everyone that has lit a candle or left a tribute. Please everybody, do the same. Reading your funny stories and memories about Kayles is what is keeping us going. All we have left are our memories, we would love to share yours aswell.

All our love always Kayles - we'll meet again and when we do we will never let you go
Mum, Norm, Nathan, Alex, Jules
xxxxx

How a grieving mum feels:

You say to me, "It's been a year,
when will your grieving end?"

"Why can't you be like you once were,
my smiling happy friend?"

If you really want an answer,
though, I wonder if you do,

I'll take you deep inside me,
where sadness dims the view.

First, my "friend", for your sake,
come close and take my hand,

And we will pray that what I share,
you won't have to understand.

The me you once knew is no more,
it went with my child,

A voice was stilled forever, yet,
the echo drives me wild.

You say you lost Aunt Bertha,
so you have known death too,

Aunt Bertha, however, was not your child,
and she was ninety two.

I barely survived those first months,
coping was a dreadful task,

I'd tell you I was fine,
while sobbing behind my mask.

If I talked about my precious Kayles,
you turned away in fear,

You couldn't stand to see me cry,
nor would you share my tears.

I wanted to speak of her, please,
won't you say her name?

But, you pretend she never was,
so she died over and over again.

Oh, I see that you're uncomfortable,
you no longer want my hand.

So as it was before we talked, my "friend",
you don't want to understand!

I have met lots of lovely mums of Angels since Kayles passed - these are just some of their children's sites.

I have met a lovely lady called Gail whose little girl Meshael passed over when she was nearly 15. Gail knows the pain of watching a child die too and has provided endless support in times of need. To visit her daughter Meshael's site click here: www.geocities.com/dadtochris7/meshael1.html

Katy is a very special friend of mine, who happens to be a psychic medium who has brought me proof that Kayles continues to live on in spirit - her lovely son Mark passed over and also lives on, helping Katy with her work. To visit Mark's site click here: www.markvenvell249.com

My friend Tracey lost her two babies when they were tiny. Carrie and Emma are forever together now. Tracey is one of the bravest mums I know. To visit the girls site click here:
http://chrisangels2.bravehost.com/index.html

Funda and Ben's little girl passed away following tragic events. Sibel looked like an angel down here with her golden skin and hair. To visit Sibel's site click here:
www.sibel-royer.memory-of.com

Wishing all Angel families peace.

It was your time to go Kayles, you had suffered enough and you held on to say goodbye to most of the people that loved you and cared about you. I hope these people still hold you in their thoughts and remember you for being the brave and inspirational young lady you were.

I love you more than words will ever say and I know that you will be with me today as I struggle through another day without you.

Happy Birthday darling. I love you and miss you always.

Your ever loving mum.xx