Helping young people living with kidney disease
Ruth - My Memories
Danielle Sarah Stretton was born to me on the 28th February 1990 at 8.51pm, she weighed just 3.13oz (insert 2 photo’s). Dan never made a sound for 2 days, but when she did eventually cry, all the nurses came rushing in just to hear her, It was a tiny squeak rather than a cry. She did however soon learn how to use her lungs to the maximum and we all know that she decided never to squeak again,
As a toddler, she was adorable, yet very stubborn. I don’t think I ever saw a child who was more stubborn than Danielle. One day however, my eldest daughter, Sarah and I got our revenge. Dan like most kiddies, are big lovers on emptying the toy box and on one occasion she must have thought there was still an item in the toy box so she looked in and saw there was nothing, but as she turned she lost her balance and fell backwards into the box ( photo). Dan screamed and shouted to be helped out, even turning a lovely shade of red, but we sat there trying to ignore her, Sarah being the first one to give in and help her as she could never resist a plea coming from her little sister, which I hasten to add remained so throughout Dan’s life.
On Danielle’s first day at school, like most parents I was terrified of leaving her there, but Dan turned round and said “Mummy don’t worry, I’m really looking forward to school “. Dan always cried when I cried, so with a tearful hug I kissed her goodbye and watched her walk away thinking to myself that time goes by so quick.
The second day I left her after making sure she had everything and that she was safe. That afternoon I had a phone call from school informing me they were in a panic as they could not find Danielle anywhere, they were truly worried. I raced to school fearing the worst only to be told on arriving that they had found her, safe and sound behind a big bookcase reading a book. They and I breathed a big sigh of relief. This happened quite regularly but from then on they always knew where to find her.
Danielle had lovely teachers throughout her school life and on the whole she was always very happy to go to school each day. One day though in her early years at secondary school, she defended a good friend of hers that was being bullied quite badly but unfortunately in doing this the bullies turned on Dan and this continued relentlessly throughout the rest of her school days. Astonishingly the bullies did not deter her in the slightest as she would still be a champion to anyone who was being bullied, even if that person was just feeling down or lonely she would take them under her wing. In an odd kind of way, I believe the bullying made her stronger and she would never back down, and faced up to anyone she thought was a bad person. This strength carried her through the most horrendous times she faced in her adult life.
Danielle’s biggest love from an early age was dancing and singing. I took her to her first dance lesson at the Silverdale Community Centre at the age of 5 and she loved it. Dan went on to achieve medals and certificates galore. She also sang all the time. She loved a variety of music from rap to mainstream pop, but her main love was singing to musicals for example, Wizard of Oz, Calamity Jane, and Mama Mia being 3 of her favourites. Tony (My husband and stepfather to Dan) and I bought her the CD of Doris Day for Christmas 2014. She said she wanted to play it Boxing Day morning in her flat so she could sing loud and with abandon. Tragically she never got to sing to it. (photo).
We had so many memories of camping holidays over the years and if I tried to talk about them all, I would literally have to write a book, but the memory that will always spring to mind was the first every time is Newquay in Cornwall.
We all had fantastic memories of sunshine, beautiful sunsets, playing cricket till it was dark, Watergate Bay, Crantock Beach, where we laughed and played from morn till night, and as I mentioned before, always singing. Dan sang a song she loved at that time which was Lily Allen’s, Smile, she sang it so loud that it drove T (as she always called my husband) to distraction, threatening to throw her out of the car. She would just laugh and carry on. I just giggled.
We did however have many more brilliant holidays which I hope will remain good memories for her friends including, Rachel Cox, Zoe Smith, Rachael Stevenson, Lisa Braddock and Hazel Zafarese and I bet each one will say they all had an amazing time and I hope that none of them will forget those happy holidays.
I know this may not mean much but on all of these holidays Danielle always seemed to know when I was nearby so I asked how she knew. She said, “I can hear your bangles”. I have worn my bangles since she was a baby, they helped her to sleep by holding on to them whilst still on my wrist. Those bangles went with her in her snuggle box.
Birthdays were always an important time in Dan’s life, made even more special in her young days with the help of two wonderful friends Joan and her daughter Julie.
For Danielle’s 11th Birthday. having the best disco at the local community centre, dancing with all her friends especially, to Cher’s, I believe song, except for Liam Wood and Adam Kenney who just clowned around as they always did at parties, but Dan loved them both.
For Danielle’s 12th Birthday. Tony and I took Dan along with her best friend Zoe Smith on her first flight from East Midlands Airport to Edinburgh. After a trip round the city, we finished up at the Zoo, it had been snowing which for Dan it was a big bonus as she loved snow. When we got home she said that she had been to see a winter wonderland.
For Danielle’s 13th Birthday. Dan always wished that a Limousine would come and pick her up from outside school along with her best friends, so Sarah, Dan’s nana and grandad and myself hired and paid for just that, and made her wish come true. (photo)
For Danielle’s 16th Birthday. Family and close friends took her to a posh restaurant for the first time in her young life, which again she wished for. We always tried to do something special on her birthday.
For Danielle’s 18th Birthday. Dan had her first OFFICIAL taste of town, again her close friend Hazel and her sister Sarah went with her but not before Tony and I opened a bottle of champagne toasting her coming of age. (photo)
Danielle’s 21st birthday was a big event. We hired a room with good friends and family attending. There was party food and a disco with Sarah being the DJ. The night ending with Dan being very drunk, looking very funny with tired eyes and trying to light a Chinese lantern. She finally succeeded and sent it soaring into the night sky with me making a wish. That wish did not come true.
My birthday, on October 5th 2014, was yet another memorable time. We had a lovely meal with lots of presents coming my way, but then I gave Dan a present. It was the cheque for compensation she was awarded from clinical negligence claim. She looked at it but because she had blurred vision she struggled to read it as she had just been diagnosed with severe diabetes. So after squinting with no success, she turned to my husband and asked (how many zero’s is that T?), he replied “Oh about 4 “. We all laughed because her response is something that I cannot repeat. Unfortunately she did not get the chance to enjoy her new found wealth.
Danielle moved into a flat in November 2012, and she was over the moon as she wanted to achieve an independent life. With the help of good friends and family we created a beautiful, safe flat that she soon called home. There were children living near to Dan’s flat and they soon learned to love her and they would flock to her so much we nick named her, The Pied Piper.
Danielle loved her flat initially but then started to hate it as she began to feel very lonely. Her old friends had busy lives of their own, jobs, husbands, wives, and babies, so Dan felt the world was leaving her behind .She began to just cosy up with her slippers and fleece which became a trade mark of hers. The dialysis unit became used to her arriving in said fleece, slippers and odd socks. All the nurses and patients knew when she was going out afterwards as she would be wearing a daytime out fit and would usually be heading off to see either Zoey or Gemma, two of her remaining friends that stuck by her through thick and thin. It was however the most heartbreaking thing for me to see my Gazelle like, athletic, fun loving daughter becoming an old woman before my eyes. On one of these occasions at dialysis she told me that living for her was the hardest thing to do.
Because Danielle got so poorly in the last 2 years of her life we became even closer, not that I thought that was possible. I did something to help her every day, washing her hair because she had crystallised bones in her shoulder and could not raise her arm. I cleaned her flat as she had OCD and did not have the strength to do her own chores. I had to bathe her because she had so many scars that needed to be kept dry. I also did her shopping as she did not have the strength to carry her goods. I drove her to and from dialysis as transport was a constant let down for her. In doing all these things for her, I thought that I had a purpose and that purpose was to help to make life more bearable for her, unfortunately we argued frequently. She felt so frustrated at not being able to do things for herself that she used me as a punch bag, so much so that I miss the feeling those punch’s gave me so much that it hurts. On reflection, it was apparent that even though she so desperately needed me, she resented me too. It was no fault of Dan’s or mine, it was her horrendous illness that forced the situation on us both. No one will ever understand how this illness took away both Danielle’s prime teenage years and interfered massively with her early 20’s. Dan told me on many occasions that she could not see a future in her life. Listening to that as a mum who loves her child unconditionally, it was soul destroying.
I would at this point tell the story of all the horrendous operations that Danielle had to endure. All the terrible procedures she went through and all the extreme conditions my daughter accepted in the hope that she could eventually live a better existence. That has already been told in Danielle’s story. However I feel there are two stories that need to be told. The first one, is such an important moment in time when Danielle knew her life would change forever. Doctor’s and Consultant’s were bombarding her with very frightening hospital procedures, but the one thing that bothered her above all was needles. She was terrified of even the smallest of them, so much so she was diagnosed as needle phobic. For the first 4 years she was in constant fear every time Doctor’s, Phlebotomists and nurses came even close with a needle, but with sheer guts and determination, she faced her biggest fear and therefore made an unbelievable decision to needle herself. This was not just a small ordinary needle this was the size of an old fashioned darning needle and for her to make that decision was the most frightening time for Danielle and all the family. As a reward for her bravery I bought her a chocolate medal and presented it to her with pride so much so, my heart was fit to burst. (photo)
The second story is, after every operation when it came time for a shower, I would be there to help her, she would be so nervous of getting her new scars wet and she would scream at me saying, “Mum be careful”, I would laugh trying to put her at her ease saying, “It’s just like hosing down an Elephant”. She would have to give in and laugh. Sadly I have to say that through all these ops and procedures, the look of horror and sheer panic on Danielle’s face is something I will never forget as long as I live. Sarah and I went through every one of those operations together and I believe I speak for Sarah too that she went through her own hell, because not only was she there for Dan, she was also there for me. Sarah was not only sister to Dan, she was also like a young mum as she looked after her in childhood probably as much as I did, so when Danielle said, “I DON’T LIVE, I JUST EXIST” is just another of the hardest things to hear from your sister, and from your own child.
I know I reflect mainly on the last 5 years of both mine and Danielle’s life but I feel I have no option, given this is the story of me as the mum to my very poorly daughter. We did however have good times in those last 5 years. A year ago in May of last year Sarah wanted to take Danielle and myself to Drayton Manor Park. On leaving the A42 Dan noticed a sign for Macdonalds. The family all knew that Dan loved Macdonalds with a passion, so I would have to drive into all of them on her and my travels and this day was no exception. We eventually arrived at the park and had such fun, made more special as Sarah and I heard her laugh which became very rare in that last year. Her laughter most of the time that day, however was directed at me as each ride I went on I screamed and swore so much that in between her laughter she told me I was a complete disgrace. We left the park and on arriving back to the car we opened our picnic and sat on the grass in beautiful sunshine. People often speak of something being idyllic. This moment in time was just that for the three of us. We spoke on the phone every day and Dan would txt and watsapp on a daily basis. Danielle was so predictable because when we did speak, if she called me mum, I would instantly know that she was either poorly, or needed my help in some way, but if she called me mother I would know that she was angry at me or someone at the hospital. Lastly if she called me mummy it was because she needed a favour or she was just happy, obviously mummy was my favourite way of being addressed by her. I drove Danielle to so many places on a daily basis and I took to singing songs to her mainly silly songs just to try and put a smile on her face. She joined in on most occasions and we would sing at the top of our voices often ending up laughing. These funny little moments become the ones you miss the most.
In November 2014, I started yet again to notice a subtle difference in Dan, she seemed tired more than was usual for her, being sick constantly and her smiles or laughter never seemed to reach her eyes. I truly believe the last seizures she had took their toll, so I therefore became even more protective of her. I started to become more aware of when she did or didn’t dialyse, I would interfere constantly to the point that in the middle of December, I booked her into to a dialysis slot knowing that she was going out with her friends for Christmas. She was so angry with me for doing this so she opened the door to my car as I was driving her home and threw herself out. I was beside myself with fear, I just stopped the car, jumped out and by the time I got to her she was being violently sick, blood oozing from her mouth and nose. I became terrified that she’d harmed herself. She eventually calmed down after screaming how much she hated me. That week Danielle booked herself into see the Renal Councillor, which was the first time she’d ever gone to see her. It was all so positive as she realised that she had scared herself and me to the extreme. I truly believed that things were looking up and I even told people that this would be the best Christmas.
Danielle had a weird love for the Coca Cola Christmas lorry so two weeks before Christmas I took her to Derby Cathedral Square to see the lorry. Dan spent well over half an hour looking around it in total awe. I loved it too because the look on her face when she first saw it was one of sheer delight.
Leading up to Christmas she tried to show enthusiasm for the festive season as she always said, Christmas was the best time ever. Sarah took her shopping and they both had a wonderful day in town. I took her to Long Clawson dairy just so she could buy cheese for her sister as she knew Sarah had a passion for unusual cheeses.
On Christmas Eve Danielle rang me, truly distressed as she’d had a misunderstanding with someone. I tried to calm her down, telling her that I would try to put the situation right. I was so worried that her blood pressure would shoot up as that was the one thing that triggered her seizures. I kept her busy with phone calls for the rest of the day to try and take her mind off her troubles by telling her all the hassle I was having baking. She giggled at me as she knew I didn’t like baking.
On Christmas morning, Sarah and Simon picked Danielle up from her flat and they all came to Tony’s and mine. We had a fantastic morning opening presents, giggling and laughing throughout to either the nice presents or the funny ones that we all received. Unfortunately around 5pm that evening, Dan was being sick and asked if I could take her home. I was so reluctant to do it and tried to dissuade her but she said she just wanted to get her fleece on and watch the DVD’s that Sarah and Simon had got her. I drove her home and went upstairs to her flat with her to make sure all was safe as I usually did. I gave her a hug and did what became a bit of a ritual between me and Dan.
I kissed her on her forehead saying that’s an angel’s kiss.
I kissed her on her nose saying that’s a fairy kiss.
I kissed her on both cheek’s saying that’s a little girls kiss, lastly
I kissed her on the lips saying that’s a mummy’s kiss.
Danielle rang me approximately 7.30pm to remind me to watch a comedy on TV called Mrs Browns Boys. I asked her how she felt and she replied “I’m ok”. If I had that response once, I had that reply a 1000 times. I rang Dan 8.30pm and we had a giggle about the programme we had just watched. I then spoke to her again at 11.30pm, she heard T singing Chitty Chitty Bang Bang. ( Dan had made him watch the film earlier ). She said “ Is that T singing?” I replied yes. Her response was “BLOODY HELL” and we all fell about laughing. That was the last time I heard her giggle. I then had a phone call from her at approx 1.40am which I missed but something in me must have heard the phone as I rang her back within the minute. Dan spoke softly and told me that she did not feel well, she had tummy ache and cold sweats. She was agitated, saying that she didn’t feel right. Thinking about past seizures, I asked her to keep calm, telling her that I would get things sorted with her ongoing upset from Christmas eve, I also told her to put the television on again, have a cup of tea and keep warm. I reassured her as I did in many of those conversations without realising what was to happen. I did also advise her to phone for an ambulance if she felt worse. The last words I spoke to Danielle were to tell her that I loved her. This last conversation I had with her haunts me as I have it recorded on Dan’s own phone.
Sarah and I broke into my Danielle’s flat on Boxing Day. The memory of that day will stay with me all my life. I saw my eldest daughter trying to breathe life back into her sister and I know in my heart, that will haunt Sarah for all her life too. I laid with Danielle for approximately 3 hours as there was no way I was going to let her lie there alone, I kissed her, hugged her, shook her all in the hope that she would wake up.
Thoughts of that night haunt me because of something I heard soon after.
“NO ONE SHOULD EVER DIE ALONE”
To see my daughter in her snuggle box as we named it, was an agony, a feeling I hope I will never feel again. I went to see her every day in that last week, I cried all the time but I remember as I leant over her sobbing, that one of my tears fell on her neck in the very same place that I used to look to see if she was still breathing after every operation she had. I kissed her in our special way every day, and the very last time was the 18th January 2015. The next day I buried her.
The last 5 years of Danielle’s life were harrowing, tortuous and painfully hard. I worried for her everyday but that worry has been replaced with despair and I can truly say I would have that worry over despair every time.
I will put my hand on my heart, where incidentally she is locked away, and say it was not my duty to take care of her as I did. It was an honour and a privilege. I have and will always have the upmost respect for my daughter and when people say, Who would you most like to have a half hour conversation with?”, it would not be someone famous, it would be my Danielle.
I know that Danielle is dead, but I have to believe that she died like Jesus did to save others and in Dan’s case to help youngsters, to put a smile on their faces and to help with other aspects of their sometimes awful lives. For me that is where the charity comes in because without this I will always think that she died for nothing and for me that is unacceptable.