In The Powder Room

Oct 11

Life is rich

Comments (13) by Sam Carlisle October 11, 2009 - 9:05 PM

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Sam Carlisles daughter Elvi (now aged 7) was born with a genetic disorder so rare it took specialists two years to even reach a correct diagnosis.

Along with the devastation, shock and adjustment at home, Sam a national newspaper features editor, was also being tested by another set of battles - an over-stretched system littered with admin errors and lacking in people skills.

She has since become mum a second time around to Sonny aged 2.

My gorgeous, beautiful daughter has special needs. If a new baby is a hand grenade thrown into your lovely, ordered, straightforward life, being told your child has severe special needs is the full arsenal. All certainties melt away. You know you have to cope. You know you have to be strong. You know the dreams you dared dream for your child will never be met. You know the babies that lay alongside yours in the maternity ward will start to walk, talk, run and jump while your child doesn't. You know you have to make life as wonderful as it possibly can be for this broken little thing. The battle begins.

When my daughter was six months a shaky health visitor scribbled the devastating note in her red book: 'failing to thrive'. After two years of false diagnoses, baffled consultants, high-fat diets, and our own research we were told she had Rhyzomelic Chondrodysplasia Punctata - normally fatal by the age of two. By this stage her bones weren't growing properly, she had severe learning difficulties, cataracts in both eyes. There was no prognosis because there were so few children in the world with this condition - 40 according to Great Ormond Street. The calendar became peppered with appointments. Paediatricians, liver specialists, geneticists, orthopaedic surgeons, physios appeared. Eye specialists, dieticians, portage teachers, speech therapists, occupational therapists were called in. All of them well-meaning but over-stretched. So many different specialists contributing a tiny fraction to the life map we wanted for our girl. Despite our search no one we found could fix her.

Each professional wanted to hear our story over again. First question was always: "was it a normal birth?" We got tired of spelling the name of her condition. I snapped at a registrar who asked if was a doctor because I knew so much about RCDP. Health visitors were confounded by a child that didn't fit into the red book centile charts. 'We can get you free nappies' they offer meekly. Our GP knew nothing of the syndrome and offered no guidance. As her age-group peers started hurtling around playgroups we watched as our beautiful girl was knocked out for a brain scan, we clutched her tightly as gentle nurses tapped first her arms then her feet for blood samples that never came easily. We held her as a skin punch was taken to send to Amsterdam because her case was so rare. We tried to keep her head still for eye drops and eye tests, probes on her brain, hearing tests.

Our lives became a series of messages left on social service answering machines asking for appointments or equipment. Asking became begging and finally threatening to kidnap some poor administrator's relatives because she'd lost our last two messages and she really didn't know why our child's walking frame hadn't arrived two years after it was ordered. I had to stop myself driving a stake through the heart of the clinic receptionist who tutted because my girl was sobbing having waited two hours for an eye appointment. The clinic had a dismal basket of knackered battery-free toys. It was sat next to a Tesco shopping trolley used as a filing cabinet for patients' notes and above that a 12 inch TV (perfect for kids with bad eye sight) that was never switched on. We had to visit this hellhole every six months.

When, aged three, our daughter was statemented for special needs by the local authority they confidently predicted she would be suited to a mainstream school. It was only when we visited our nearest primary that a teacher took us to one side and whispered that we were being short changed, that she was risking her job saying so but the school couldn't meet our child's needs. She couldn't have been more surreptitious if she'd been selling us drugs. By then the few special needs schools in our borough had been filled. We fought to get our girl into a school in a neighbouring borough. We fought to get her transport to that school. We fought to get the therapies to which she was entitled provided in a different borough.

People often tell you special needs children are given to special parents who will make a lovely home for them. But there is an anger in having a special needs child that has its seeds in the injustice of your baby being the one that is sick but that feeds on the battles you face caring for that child. I started picking fights with traffic wardens, friends who had melted away uncertain how to help, family members who didn't quite seem to step up, people who left their bins out so that they blocked the footpaths making wheelchair access impossible, consultants who kept us waiting for three and four hours, colleagues who still made jokes about 'spastics' and 'sunshine variety buses' without thinking. It's noticeable that the divorce rate among parents of special needs children is far higher than the national average.

But throughout this, what keeps me going is my gorgeous girl. Her strong personality, her hard work and resilience, her incredible, confounding achievements amaze me. The way she throws her legs back over her head when she finds something funny, the determination she had first to bum shuffle, then to walk in a frame when there was huge doubt she ever would. The day she got her first pair of glasses and it opened up her world. The way she now says and signs 'Good Morning, everybody' with a dramatic flourish of her hand. The fact Ernie from Sesame Street has been dumped for Zac from High School Musical. Her love of dancing in my arms while watching Strictly Come Dancing, her thrill at joining riding for the disabled, and just pushing her through our village in her wheelchair are the purest joys. She met Justin Fletcher, Mr Tumble on CBeebies' Something Special and she looked like she'd met Elvis. If she works herself into a frenzy, frustrated at her inability to communicate, a quick burst of A, You're Adorable complete with Makaton sign language almost always calms her down. Her first steps in a walking frame aged four were to us the finishing line of the Beijing 100meters. Her first words were an Oscar acceptance speech. She has an in-built receptor for decent people. My father and grandmother light up her life. She worships her Daddy.

Now aged seven her school has turned out to be the perfect place for her, nurturing, caring, and great fun. We've learned to negotiate the NHS waiting rooms. Other parents of special needs kids, some of them much more severely disabled, are a great source of solace and humour about our 'predicament'. We all share the deepest, deepest love for these fragile, vulnerable children. Life IS harder but Mr Cameron, you are right, life is richer.

Since writing this beautiful and very honest portrait of life with Elvi, Sam has begun a regular blog in the online paper she works for (okay, it's The Sun). You can catch up with her world here.

by Sam Carlisle October 11, 2009 - 9:05 PM

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  Report Tue Apr 14, 2009 - 6:01 am

  by  Noname

  Hi Sam I Am, Here's to all the parents who DO step up and make a difference to those children who would continue to 'Fail to Thrive' without them. I think life is richer too for the things we learn about ourselves in the process of clearing a pathway for our children. I am glad you have found a school that is great for Elvi and that you can trust. Elvi's progress and achievements to date make you and D parenting hero's....congratulations on rolling up your sleeves and getting on with the job! I curse the person with the wheelie bin with you and hear you about the toys in the doctors waiting room...they're a disgrace and an insult...receptionists around the globe 'Step UP!' To Team Elvi keep your machete sharp....and we're thinking of you from time to time and hoping for you many more memorable milestones. The Willivers

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  Report Wed Mar 18, 2009 - 9:51 am

  by  Noname

  "Look in thy heart and write" said a poet. You did just that Sam and touched my heart too. Love to you an Elvi from P.W.

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  Report Tue Mar 17, 2009 - 12:04 am

  by  Terry Carlisle

  I am Sams mum. I am so proud of my wonderful daughter. She is an amazing mother. Elvi has surpassed all out expectations due to her fantastic parents. She brings all of us who know her such joy.

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  Report Sun Mar 15, 2009 - 9:52 pm

  by  Noname

  Well written Sam. This is lovely. We too had a lot of anger and upset with all the questions and appointments when Cameron was alive and we still follow the lives of all the RCDP families we know of now. RCDP babies give you so much joy and so many happy memories. Elvi is a beautiful little girl. Love to you all, Claire,Criag & Joshua.xxx

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  Report Sun Mar 15, 2009 - 9:41 am

  by  Noname

  I have been honoured to met Sam, elvi and Elvi's dad, and it was a wonderful time. Charlotte the little girl i look after has rcdp and when we put got the girls together it proved that these girls were due all the help they can get, they do not need doctors and so called specialists telling they parents what to do and what to expect as basically they havent got a b***** clue. Sam's words were what i ear so often with all the families i am honoured to work with, its such a shame that they have to fight for everything. a message to sam: thanks for explaining what life is like as i am sure many people just dont appricate what life is like for families with a disabled child, Stress most people haven't got a clue, cause very few will have to encounter watching they son or daughter go though so much in they lives. Love ya Sam and Elvi xxx

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  Report Sun Mar 15, 2009 - 8:20 am

  by  Noname

  I find Elvi to be the most blessed girl in the world to be given Sam Carlisle as a mum. XOXO Bethanie

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  Report Fri Mar 13, 2009 - 9:22 pm

  by  Noname

  Sam As you know myself Dan and Callie (18 months) live in your world, Callie also having RCDP. I cried when I read this. It is exactly how it is ! I cant tell you how many times I have said full term, normal birth and RCDP. I cant complain about the care that Callie gets from her eye specialist, contact lense clinic, bone specialist, metabolic clinic, ENT, portage, physiotherapist, IDS, Speech and Language, Dietician, Paediatrician, family key worker,Gastrostomy surgeon, Homeward etc etc. Birmingham childrens hospital have been amazing too. We have started a UK based charity called www.rhizokids.org.uk and we now help to raise money for RCDP research in Canada. That is the only thing I will complain about, the lack of interest in researching this disease oh and also the fact that like with cancers we cant get selective IVF as it is classed as "designer baby". How can it be wrong to wipe out this disease by ensuring babies dont have it in the first place? I too am angry, I am angry with just about everyone and there is no place to vent it!

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  Report Fri Mar 13, 2009 - 12:56 pm

  by  Noname

  this is the sort of thing that makes you vow to never complain abut your so called 'normal' children again, or never complain about how hard life is as a parent. Of course that will not happen, well maybe for a day or two, but the thought is always there. I agree with the last comment on two counts, a book should definitely be forthcoming and these amazing ladies rock harder than Led Zeppelin!

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  Report Thu Mar 12, 2009 - 8:10 pm

  by  Noname

  An incredibly honest and inspiring article. Both Elvi and her mum rock! Perhaps a book might be forthcoming?

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  Report Thu Mar 12, 2009 - 5:23 pm

  by  Noname

  I thought this was so beautifully and honestly written, it makes me realise how incredibly precious our children, and all their achievements are. Big and small. Thank you for writing this.

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  Report Thu Mar 12, 2009 - 1:36 pm

  by  Noname

  What an eye opener - and incredibly moving. I'm sure you don't want or need admiration, but I have it for you in spades.

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  Report Wed Mar 11, 2009 - 9:06 pm

  by  Noname

  This is a wonderful article. Thank you so much for allowing us a view of your life, and your beautiful daughter.

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  Report Wed Mar 11, 2009 - 7:08 pm

  by  Noname

  I cried reading this. I love the fact that the maternal ties are so strong. I had a baby who died at birth and I grieve for her every day. When I knew I was losing her I was torn between knowing that if she had been born so early it would have been with severe handicaps and feared for how I would juggle life with my older child but as soon as I gave birth, felt her coming out, held her in my arms I knew I could have coped with anything. Having my milk come in and not having a baby to give it to was the most heartbreaking thing of all. Thank you for writing this.

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