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I'm differently sporty with my disabled son (Disability Dads series)

Guest Guest | 12:38 UK time, Friday, 16 March 2012

In our final Disability Dads blog entry for the present, James Melville-Ross writes how he and his wife had to have fertility treatment to conceive. But the life and parenthood they worked so hard to achieve didn't turn out the way they had planned.

In April 2003, we learnt that my wife Georgie was expecting twins. We had gone through a lot of tears and effort to get to this point and were thrilled. Finally we could dream about our future with children and start to imagine what sort of people they would grow up to be.

Parenthood so nearly didn't happen for us. For three years we had been trying and for three years the monthly, heartbreaking arrival of Georgie's period would dash our hopes.

After several attempts at IVF with all its probes and invasiveness, we finally received the news we had been waiting for. It came from a small deadpan East European doctor who was in the middle of scanning Georgie's belly, she said: "Yes, definitely two heartbeats," thereby acknowledging the presence of twins.

My eyes strained to see and my heart strained to believe the images on the screen in the dim lit scanning room. I guess it was at that moment, with their existence confirmed, that I started to wonder what sort of people our children would grow up to be.

As a sports nut, I wished for a son, someone to play football with in the park and cricket on the beach. Despite an absence of any talent, I absolutely adore sport and am known as an obsessive. No longer would I get a little feeling of resentment towards other Dads playing in the park with their kids. Finally that was going to be me!

On 27 August 2003 our twins, Thomas and Alice, arrived. They were delivered at just 24 weeks old, however, and weighed just a pound and a half each. We were told they had a 20% chance of surviving.

Over the coming months, they faced a daily battle to stay alive as everything imaginable was thrown at them: brain operations, heart surgery, hospital superbugs, collapsed lungs ... they had to deal with it all.

On day three, we nearly lost our son. He suffered a massive pulmonary haemorrhage and, as his tiny body lay grey and lifeless in an incubator, the doctor told us very matter-of-factly: "Thomas is going to die in the next 20 minutes. Would you like to have him baptised?"

On autopilot, we nodded blankly.

"Once you've baptised him, we'll disconnect the life support, you can take him to the Quiet Room, hold him and say your goodbyes," the doctor said.

Thomas was just three days old, we couldn't believe we were going to lose him so soon.

As the short baptism service was concluded, a miracle happened - our little boy struggled back to life. Where medicine had failed, the sign of a cross on his forehead had apparently won his life back.

Struggling to believe what was happening, I leaned in to speak to Thomas through the tiny port hole of his incubator. "Thank you for fighting back, my son. I promise that if you make it, I will not rest until I know that you have the best possible life.... We are going to have such good times together."

And survive he did. His sister too. After nine months in intensive- and special-care, the twins came home.

Their early arrival and difficult first few months had paid their toll, however. Within two years the extent of their disability became apparent. It was a bitter pill to swallow after the lows of IVF, the highs of finally conceiving, the trauma of their spell in hospital and then the victory of their survival.

The paediatrician told us: "These children are unlikely to ever walk. Speech is likely to be unachievable. They are going to need permanent care for the rest of their lives. You will always have to feed them, change them and attend to them at night. They have severe dystonic, quadriplegic Cerebral Palsy."

I didn't even know what most of those words meant.

A bomb had gone off in our lives and the juddering knock to our dreams was painful and extreme. For me it was that loss of sporting ambitions that was tough to concede. My potential team mate Thomas and I would never compete together.

In many ways these feelings of loss were doubled because Alice was in the same position as her brother. She and I have a wonderful loving relationship but as this blog is about 'boy stuff' for other dads who might be reading, I've focused mostly on Thomas.

And so one day I found myself back in the park again, jealously watching fathers kicking a ball with their sons. I looked at Thomas in his wheelchair, his legs rendered useless by his disability, never to run and compete with friends.

Then I remembered clearly the night he pulled through, and the promises I made and I realise: Why shouldn't we do these sports together? We just need to find a way to do these things our own way.

Since the experience of that third night after Thomas's birth, he has been something of a hero for me - someone I look to for inspiration in difficult times. Thomas made a conscious decision to survive that night, spurred on, I have to believe, by my whispered promises to him.

Which is how on a blistering hot June day three years ago, with my son now aged six, we find ourselves lining up with 1,000 other runners in our local 10k race in Thame, Oxfordshire. Thomas is in his wheelchair, and I'm in my sneakers. What an experience! And what amazing support as we run the course!

As we turn the corner into the final straight the cheers go up for us and I raise Thomas' arm as we cross the line. His face beams with delight at the rapturous applause ... and I'm grateful for the sweat of exertion which is concealing the tears of joy running down my face as my sporting dreams are finally fulfilled.

Afterwards I ponder how far we've come. It's not the way I'd imagined it during those short months that I'd watched Georgie's belly expanding.

It is a different outcome to my dream. But different is what it is. Not worse. Just different.

Parents of disabled children sometimes have to adjust their expectations and create bonds and fun in alternative and inclusive ways. How have you achieved this? And how do you make sure your disabled child doesn't get left out of family activities? Tell us your story in the comments below.

Comments

  • Comment number 1.

    I have cerebral palsy. I am now 46 with a young family of my own. All my life my mother has treated me normally. To her I am just me, to my husband I am just me. The greatest gift you can give your family is love and normality, because in the outside world normal doesnt exist for cp sufferers. I am blessed to have my life, and to me without the cp, I would not be who I am. Keep doing as you are doing and good luck to all of you.

  • Comment number 2.

    What a lovely story, and one that certain people in government could do with reading before they continue with their benefits-slashing... I am a mum of two children, a girl aged 4 who is incredibly beautiful and gifted for her age, and a boy, 2, who has a very rare genetic disorder, Kabuki Syndrome. This means he is developmentally and physically delayed and will have a lifetime of check-ups. But he is the most gorgeous and happiest little boy you could ever meet. The feeling that I am currently trying to deal with (as his diagnosis is fairly recent) is that he shouldn't have been like that - he is made from the same genes as my daughter and so he should also be clever and able to cope with life with the same verve and spirit as she does. But he is what he is, and I know how lucky we are to be blessed with two beautiful children. Best of luck to the family in the article and all those in a similar position.

  • Comment number 3.

    I'm lucky enough to be a 55-year old, first time father of two healthy, energetic boys aged 6 & 3. I had tears running down my face as I read this, thinking "there but for the grace of God...". My biggest regret? - that I'm unlikely to be around to see my grandkids, so I took early retirement to make up for the 20+ years i've missed out on and spend as much time with them as I can.

  • Comment number 4.

    What an inspirational story! I too like probably most who have read this have tears running down my face. I can only relate to some of the emotions these wonderful parents have gone through. I am an ordinary hard working woman/wife with a very loving and supportive family. I am a twin too and have one older sister who both have children but unfortunately I was unable to have children. Like this family I make my life as fulfilling as I can with work, friends and recently took up running so I know how proud it feels to complete your first 10k, well done you. I wish you all the best and many more happy years. Thank you for sharing your story.

  • Comment number 5.

    Your beautifully-told story moved me to tears, and as the bed-tempered mother of surly teenagers held up a mirror of parenthood. You should be proud.

  • Comment number 6.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 7.

    I think your son is very lucky to have you as his dad. You remind me of another amazing father:
    http://www.youtube.com/watch?v=Kt7w8hV90SI

  • Comment number 8.

    As an embryologist (the person that actually 'generates' the embryos in the lab), the HFEA have a huge push on over the last few years to reduce the incidence of twins born through assisted conception. There has been widespread compliance with the targets set by the HFEA and the bulk of staff are for these reductions. The staff all know the issues regarding twins and high-order multiples.

    I read this story with interest and nearly cried reading it. Its not easy trying to convince patients to only put one embryo back as the majority of patients believe that replacing two embryos doubles your chance - it doesnt. The statistics back this up. The quality of the returned embryo is the critical factor.

    The amount of times i have sat in front of couples with them demanding that two are returned and after discussing the risk of twins hearing 'we dont care,','we just want to get pregnant' or 'an instant family','it means i dont have to go through this again'.

    We should have to make the couples read this families story before making a decision about returning two embryos. More than not, its the patients decision to have two - not the staff.

    Thanks you for posting your sad but also wonderful story.

    All the best for the future.

  • Comment number 9.

    This is a wonderful, heartwarming but bittersweet story. However, have you the parents given any more thought to what happened at the baptism? Was it really your little boy fighting back, or was it truly a miracle from the God whose sign had just been placed on his head? Perhaps you should investigate further? Or maybe you already have.

  • Comment number 10.

    25 years ago our children were both born prematurely, our son 8 weeks early and 2 years later our daughter was 12 weeks early. Our son had no ill effects but our daughter weighed only 1200 grams and spent 6 weeks in intensive care and each day brought a new crisis. Each day we prayed through the latest problem, it would be resolved and we would face the next trial. She survived and grew into a gorgeous child and is now a lovely young woman. We were told that with her disabilities she would never finish primary school - she is now studying for a humanities degree throught the Open University (who have been wonderfully supportive of her special needs), so don't necessarily believe the limitations people put on your disabled babies.
    If you are a halfway decent human being you fall in love with your child when they are first placed in your arms, and as James shared in his blog, you resolve to do your best for them and give them the best life they can have. If you honour this commitment then you will reap rewards of true value. My kids are my best friends and a constant source of joy to me. Through them we have been richly blessed.

  • Comment number 11.

    I'm sorry to disagree with the author and the other poster but I see no uplifting side to this story. I speak as someone with a quadriplegic CP child in my extended family. My view is that the multiple interventions, brain surgery etc are very seriously misguided and a result of a certain degree of arrogance from the medical profession ("we can fix this bit") without ever considering the effect on the whole family of a seriously disabled child surviving. There are devastating emotional and economic effects on the carers which are lifelong. The number of hospital and therapy appointments that such children require means that the primary carer often has to give up work to provide full time care. They are in and out of hospital with the multiple difficulties and conditions that accompany the main disability. When deciding to intervene with a seriously sick baby I believe the child's quality of life should be considered together (equally) with the quality of life for the rest of the family if that child survives as a result of the interventions. The medical profession needs to take a good hard look at what they are achieving when they "save" a sick baby so that it can grow up without speech, mobility, cognition, motor function and sometimes blindness and deafness too. Just because they can intervene doesn't mean they should. Keeping alive a severely brain damaged baby is not a medical miracle. It's often a very serious mistake, and a tragedy in my view.

  • Comment number 12.

    Thank you so much for writing this blog entry. Despite the fact that I can barely type for tears running down my face, it has helped me a lot. We also spent three years trying conceive and our daughter was born in January 2012.
    But due to a major blunder at the hospital, she is facing a lifetime of hip replacements and walking with a limp. In regards to her future we have been told she will have to rely on her wits rather than her brawn. Although a drop in the ocean compared to what you have had to go through - we are finding it tough to comes to term with.
    But we too are trying to 'modify' the dreams we had for her and your blog really gives me hope that we can find a place where we can be 'differently sporty' with her too.
    Thank you.

  • Comment number 13.

    Similarly to this dad I had twins born early. Fortunately only one has mild cerebral palsy. She is incredible and I think part of that is due to the disability. Although, just nine, she realises that she has to work just that little bit harder, as a result she ends up doing all the things people as busy telling her she can't do. Reading fantastically well, swimming, touch typing, drama, arguing!!

  • Comment number 14.

    I am a mum of three perfectly healthy children, and am posting this comment because of a negative one I saw which made me feel very sad. We would all love to have healthy children, who are able to run alongside their classmates at sports day and bring home a medal or two, or even a trophy. The fact is though, some children can't do that, but it doesn't (for most people) take away from the sheer joy of being a parent. These children also have the right to be loved and cared for, even if it means it takes a little more from the parents, for much longer than they expected to have to do it.
    This blog shows that even those children who are very affected by their conditions can take part in activities which will them feel proud of themselves, and enable them to experience a small part of 'normal' life (what's normal anyway? Just look at the news and there are people far worse off than us here in Britain) with their parents. I cried reading this, thinking that the challenges I experience and complain about on a daily / weekly basis are nothing compared to this families' and so I feel uplifted by it, and grateful (and a little ashamed) and to all you parents who celebrate your children no matter how different they are, I think you are amazing and will learn from your positive example.

  • Comment number 15.

    Thank you for this report, everyone who contributed. It is an important part of life to talk about -- one with which relatively few have had contact.

    Some 20 years ago, I had the privilege of doing a bit of work for the World Institute on Disability, based in Oakland (& Berkeley), California. At that time, I met many extraordinary parents of disabled children; also, disabled parents of abled children -- and also disabled parents of disabled children.

    The heroism and awe-inspiring Goodness of these parents can hardly be described. I was deeply moved, and learnt so much just from being in their presence.

    California was one of the pioneering states in the USA in terms of making life easier for the disabled & supporting their dignity and rights. Much of that was due to the insights & intelligence of California's present Governor, Jerry Brown, in his prior terms in office, when he appointed an extraordinary disabled man and advocate, Ed Roberts (1939-1995) to a Cabinet position. One of the best days of my life was the day I met this exuberant, brilliant human being whose energy was extraordinary. In spite of being so limited in his body, with modest means, he did more for other human beings than many fully-abled and well–funded people!

    The most important part of a person is not their body, but their Soul.

    I do not know whether Stephen Hawkins believes he has one, but in fact the feats of the Disabled -- as of those profoundly challenged in other ways, for example the brave opposition fighters & activists in Syria who died rescuing several Western journalists, including the gravely wounded Edith Bouvier -- demonstrate to me the supremacy of Spirit over Flesh.

    Congratulations to this wonderful family, who have generated so much joy for themselves and for others by refusing to allow disappointing disabilities keep them from living and loving.

  • Comment number 16.

    What lovely pictures, so much obvious happiness. Thank you for sharing your story.
    DIS-abled only means UN-able to perform as society considers 'normal'. Whatever a child's condition it is normal for them. They can be just as happy and fulfilled as any other child if they have loving and caring parents, as these two clearly have. This family will help many people during their lives, just by example, whether they know it or not. Not all disabled children start their life that way, it can happen at any age, and stories such as this will help a family to cope.

  • Comment number 17.

    I have a disabled son, 19 years old who can not walk,talk or look after himself in anyway at all. The shock/disappointment was terrible and it was a few years before we got fully used to the idea and now as he is getting older it is starting to get more difficult again.
    However there is a lot of guff being posted in these comments about parents being heroes,awe inspiring etc. In reality we do not have time to dwell on the situation although of course we do have some extra pressure and restrictions in our lives. On a daily basis though we are actually quite normal, we argue, go to the supermarket, wash dishes, cut the lawn , have to work, watch the TV , have other normal kids who also cause stress, even have too many glasses of wine sometimes etc etc .
    If we do need any help then we don't need sympathy or hero worship or money or special treatment or outreach workers, counsellers etc.What we need is people to roll their sleeves up and muck in with the boring day to day stuff , like feeding him 3 times a day and changing him 6 times a day. Normally not so many people are so keen on this part......

  • Comment number 18.

    Thank-you for writing this blog. I came across it by complete chance - you could be describing our own experiences to a T. Several years trying for children, eventual IVF, twins (boy and girl), 12 weeks early, both birth weights under 2 pounds, heart problems, bowel problems, horrendous lung problems inc. punctures etc etc. Our son spent ~14 months in, mainly, two different ICUs while our daughter 'got away with' just the 4.
    Our daughter is now a bubbly ~3 y/o with 'just' a moderate rare hearing loss. Our son was eventually discharged, on home oxygen for a year, and now is described as having severe chronic lung disease, dystonic cerebral palsy and profound hearing loss.
    The description of your grief(?) at the loss of what you'd hoped for mirrors my feelings exactly and it's great to know that there's light at the end of the tunnel, albeit a different colour to that which we'd imagined.


    @11 julianabanana

    For your information, there was nothing overt about either of our twins, either pre- or immediately post-birth, which suggested they'd have _any_ problems what-so-ever. Your suggestion that the medical profession not intervene to attempt to save lives such as these is, frankly, badly conceived and ethically flawed.


    @8 pmilne

    What do you expect of people desperate to conceive? As for being able to tell "the quality of the embryo", forgive me for laughing. Both of ours were 'perfect' blastocyst implantations. Pray tell me how you can assess the quality? You can't.
    NHS guidelines recommend three FREE cycles and yet no Trust that I know of will go beyond a single cycle. If the NHS did what we're told they should be doing, many couples would take your advice re. a single embryo implantation as they would know they can have a second one on the NHS. So we're left with prospective parents desperately pleading to have two embryos re-implanted or private clinics coining it in from wealthy and/or desperate people.

  • Comment number 19.

    @ Ian Brown, yes, exactly. There's nothing heroic about doing something when you have no choice in the matter. I wish you well. I couldn't do it and I wish it didn't have to watch my family members being crushed by the responsibility.

  • Comment number 20.

    The post by julianabanana strikes me as being somewhat intolerant plus utopian.
    It is a matter of chance whether a mother gives birth to a healthy baby; unless you have the resources to have the screeneing.
    My mother gave birth to two healthy girls, plus myself who has Aspergers plus Epliepsy; the latter -Epliepsy - was what my late eldest of my two elder sisters had.
    By implication, julinana is saying that two out of three children were mistakes; that I find offensive, demeaning and totally inaccurate.
    Full marks to the parents in this story.
    To juliana, my response is simple; please think before you post.

  • Comment number 21.

    I grew up as the first child of a mother with polio (caught whilst pregnant with me) and was separated at birth to a childrens home for my first 6 months because my father couldn't or wouldn't cope with mums disability and a baby.....after being reconciled they went on to have 6 more children (one twin Terrence drowned in a dolly tub in the garden aged 18 months with mum looking on helpless in her wheelchair) and as the eldest I had to look after the rest and mum whilst dad had to work...no benefits or family allowances then..... Mum recieved hate mail by the bucketful, mainly from so-called christians, but was also lauded in the press as a 'Mum in a Million'...which she was. But I have never considered that all people have a 'Right' to have children...able or disable bodied....if nature says no then that should be good enough....there is a reason for it....To deliberatly bring severely disabled children into an uncertain world is wrong...the parents cannot say what the future holds and making others responsible for the result of your 'dream' is at times inhuman.

  • Comment number 22.

    @Charlie If you had read my comments correctly you could not possibly draw the conclusions you have.

  • Comment number 23.

    @ 11 julianabanana

    As a member of the medical profession I am offended by your suggestion that we are somehomw to blame.

    You seem to insinuate that we should somehow tell people what is best for them and their family, advising them that saving their child's life will result in a lifetime of worry and regret.

    If you want to have a debate on how far medics should intervene to prolong / save / end life then that's fine but it is not up to the medical profession to draw the line. The public / courts / or (god forbid) politicians should decide these things. We don't intervene because we can, we intervene because it is our duty and not to do so is negligent. We don't make the rules, we have to play by them.

    I agree that sometimes the lines are drawn in the wrong places but they can only be changed by honest debate. Though I completely disagree with you in this case you do raise a valid point though I feel you have expressed it rather poorly.

    As medics can do more to save or prolong life, it is right we question this as a nation.

  • Comment number 24.

    Absolutely inspirational. Thank you for sharing this with us, I very rarely have tears in my eyes but your journey provoked that reaction not out of any sadness though, more an admiration I think.

  • Comment number 25.

    I find it difficult to understand how these comments spiralled into arguments over whether the parents are heroes or whether the medical profession should help severely disabled children. Firstly, heroes come in all shapes and sizes and are heroes to those who perceive them as such so nobody can ever tell you that you can not call someone a hero. If they are heroic to you then that is enough.

    Secondly, the debate on when a life is worthy of saving is distasteful as if someone aged 33 was hit by a car and became quadriplegic and had a brain injury meaning they would need help would the argument be valid then to not offer any medical assistance?

    The medical profession are not doing these things out of ego but out of the fact that there job is to do everything they can to preserve life.

  • Comment number 26.

    James, I think it's great that you have found alternative ways to enjoy sporting activities with your son, and that you've gone into this with a positive, can-do attitude. However, I find it distressing that you never for a moment considered playing sports with a daughter. There is no reason why girls should not play football with their dads, and where disability prevents that, other sporting activities which you seem to think belong only to boys. I was a keen tree-climber and fencer as a child myself. Look at any of the female paralympic athletes if you want to see inspiring women in sports - my cousin happens to be one of them. Being a parent is about allowing them to follow their own dreams, not yours.

    You may also want to consider that while your son's baptism occurred at the same time as the beginning of his recovery, this does not mean that it caused it. There is nothing wrong with acknowledging the feats of medical science, while also recognising that his baptism and recovery coincided in a way that is spiritually meaningful for you.

  • Comment number 27.

    Utterly inspirational and what gorgeous and very happy children you have. You should be proud of the journey you have taken and for everything that you and your wife have had to deal with subsequently. As someone who lost their first child at 5 months, followed by 2 miscarriages - and who is about to embark on IVF - I applaud you for sharing your very honest story. As my dad continues to tell me, memories are better than dreams... and I am sure you will have many more happy ones to come.

  • Comment number 28.

    I also have six-year old twins, born prematurely. They are identical, except that one has cerebral palsy, causing people to do a double take: the same girls, but one is 'different'. James' story really resonated. For me, too, my disabled daughter is a hero: her tenacity and joi de vivre are an inspiration.

  • Comment number 29.

    I agree with julianbanana (we're not related!). I am child-free by choice so perhaps don't understand what these emotions are most of you are feeling but I see nothing great about creating life when it turns out to be severely limiting both to parents and child. Full marks to you for getting on and apparently enjoying it. I couldn't do it.

  • Comment number 30.

    I taught in a school where a teenager with CP had the most brilliant attitude to his 'disability' - he couldnt represent the school at any athletic sports so he made darn certain he represented us at everything else. Shave for a Cure? He organise it. Prefect's fundraising? He was in the thick of it. He openly acknowledged that his parents attitude was the reason for his determination - 'Find what you CAN do - and do it well.' He will have a wonderfully fulfilling life, for all its apparent limitations, and his parents will delight at his successes.

  • Comment number 31.

    I so understand what this father is talking about. My only child was born legally blind and it took me quite awhile to realize the same sense of loss as this father describes. She now has won a national bookwriting contest, and has even won a local karate sparring competition where her opponents didn't know she was legally blind, but just wore funny eye protection. Parenting has proved to be far more consuming than I ever imagined beforehand.

  • Comment number 32.

    We were told we had a six million to one chance of me carrying a healthy baby full term so we decided that the risks were too high. When, a week after our wedding, we found out that I was accidentally pregnant we were full of concerns. We had test after test and they all came back normal. We were reassured by all the professionals that we had a healthy baby. For the first two years we had a normal child then as he turned two his language disappeared and things changed. He is now four and we are awaiting tests to confirm whether he is autistic. Like most people with a disabled child we have been on a roller coaster ride. Whatever the problem turns out to be, whether it has a label or not, it is all just a part of our wonderful son. It doesn't stop me feeling guilty, angry, disappointed and sad at times but knowing other parents with disabled children also feel these things helps. Thank you for writing this blog. It helps.

  • Comment number 33.

    Another family here who can relate to this story. My daughters birth went horribly wrong and she has also ended up with Cerebral Palsy although fortunately it has turned out to be fairly mild. I can totally understand how this father must have felt as those first hours when you are told things are not looking good for your newborn baby are a complete nightmare. My daughter has been a fighter from the start and I cannot believe what she has already achieved against the odds in just a few short years of her life. No, she will never be sporty and there are those other children who laugh at her attempts to run and jump in the school playground. However, she is the most determined child who has never let her difficulties stop her doing anything yet!

    I agree with girlfromwales that it is sad how negative attitudes towards benefits and those with a disability are prevailing under the present government - especially with a Prime Minister who should understand how difficult it can be to raise a disabled child.

  • Comment number 34.

    Some of the comments here have really hit me as much as the original post - my husband has CP and has a great life. Yes he is not severe (fiarly mild in fact) but he was labelled as 'thick' at school because they could not comprehend a child who was physically disabled but not mentally. He now works as a community pharmacist and is a quiet campaigner for disabled people's rights. He has refused to let the CP stop him from doing things he wants to - in his teens he sailed competitively. Yes I do anything involving fine motor control as his is non-existent.

    Cerebral Palsy is caused by oxygen starvation at birth - it is not a genetic defect as occasionally people believe. People with CP can have fulfilling lives, can attend mainstream school (I am a governor at a school where I have seen this) and can contribute to society. I truly believe that parents will always find a way to help their kids to achieve their potential. The story in this blog has made me cry as a father explains why things are different for him from what he expected.

    This story hits me from another personal direction - both my sister and I have been unable to conceive naturally - she went through 4 failed IVF attempts. My husband and I took the decision to not even go down that road - after watching my sister & brother-in-law and knowing how I react to hormonal medication. I respect those who do go through it - and will always have a slight nagging regret I did not even attempt it, but we made the decision to go for adoption. We feel that it is right for us.

  • Comment number 35.

    I love this story, I know what your life is like, the joys and the sighs, but I delighted in it because here is a man that shared this with his wife. My husband did not even want to bring my daughter home from the hospital; you think you know everything about someone.....I love that your children got a mum and a dad even though they are disabled, and felt honoured reading this when you described how your children are your inspiration. Sincere hugs to you all..........

  • Comment number 36.

    It is good to read a story such as yours. Our son is soon to be eight and he is the light of our life. He suffered the same fate as your child but through birth trauma. Maybe it's just me but I believe what he has lost in normal use of his body and functions he makes up for in his charm and humour. I am proud of you. Only a parent as yourself and countless other parents of disabled children can know and understand that love.

  • Comment number 37.

    Hi everyone, the blog's author James here.

    Wow, certainly didn't expect to trigger so many comments. Thank you to those of you who posted your thoughts, especially the positive ones. It's good to see that the message got through to a lot of you.

    A few comments to respond to:

    @juliana banana: you might be surprised to hear that I agree with nearly everything you say. Our lives changed beyond all recognition when our twins arrived, it's a major undertaking for us (especially my wonderful wife), the drudgery is endless (operations, sleepless nights, stress, arguments, etc) and we are very aware of the significant financial burden our family brings to us and society at large. I just don't think that that part of our story is helpful in getting people to understand the amazing inspiration that can be drawn from disability. People who aren't familiar with disability need to be comfortable with it and inspired by it, not freaked out by it. I'm sorry I disagree with your last line though, I can't and won't ever see my twins as a mistake or a tragedy, no matter how hard life is for them, we can only make it better for them by bringing fun and laughter into their lives. I know many disagree, but that's our strategy and it works!

    @Ian Brown, again, I agree, it's not about being a hero. As a perfectly able bodied parent we do the easy bit. We all know who the real heroes are here. Also, you're 11 years further along with this than I am. Our twins are eight and they're getting heavy. I worry what happens if Thomas ends up being my size (6'4") when he gets to 19. You have a better idea than I do. But again, my view is that we need to paint a positive and accessible picture around disability, not frighten people off. You're right, we do need people to muck in, but I believe people will only be encouraged to do so for the inspiration they can get from disabled people. We have a tendency in this country to be very happy with our taxes going to help the disabled - 'just don't make me have to deal with it'. I think that's wrong and I think a lot of people are missing out as a result.

    @Macbrack: you say "to deliberatly bring severely disabled children into an uncertain world is wrong". As I mentioned in the blog, the twins' disability was not apparent until they were past 2 years of age. Abortion was a distant option and there were no life support machines to switch off by then. We're just trying to make the best of the cards we've been dealt.

    Thanks for your kind messages and support. Thomas and Alice bring such joy to their friends and family - it's good that a little bit of their story is heard and appreciated by a few more of you. And to those of you who are new to disability - good luck. It might feel rubbish at the moment, but eventually it all comes down to whether you see the glass as half full or half empty.

  • Comment number 38.

    Ooh sorry, very important one...

    @Sophie1977, you're absolutely right. We were very worried about Alice not featuring strongly in this article. Alice loves riding, swimming and at Christmas we took them both skiing, which she loved. Alice also plays in the cricket and football matches we have on the beach with the twins' cousins. You do NOT want to get in the way of Alice and her wheelchair when she's bearing down on goal. For everything you read in this article about Thomas, the same applies for Alice... The near death experience, the whispered promises and the hero worship and achievement of amazing goals. We just didn't have room for all of it. Sorry!

    As for the baptism, well you all just make your own minds up on that one...

  • Comment number 39.

    @julianabanana Thank you for your comment. While I was very moved by this beautiful story, I also feel many people do not appreciate the life-long toll a handicapped child puts on the family.

  • Comment number 40.

    I have to agree with @julianabanana (09:41 17th Mar 2012) comment.
    Although I have every sympathy for this family, and I do not doubt for one moment the joy and the love reciprocated within this family.
    Clearly you cannot euthanase babies/children/adults with disabilities.
    However without intervention these children would have died – brutal but true. In these circumstances we are meddling with nature, sad though it is and a very hard fact of life to swallow which we as a society try our upmost to defy but nature has a way of natural selection and for very good reason.
    The stark fact is that no amount of tax they have paid/will pay will cover the cost of the medical and state intervention required to provide for children with such profound disabilities.
    It has to be said that we as a society cannot sustain these costs, along with the 'everyday' running costs of the state/society. I do not believe that keeping a person alive be they young or old 'because we can' is necessarily a good thing for themselves, the family or indeed the larger society. We are simply dividing a 'cake' into slithers which will ultimately mean that every aspect of society will suffer through lack of funding/increase in taxes.
    I have 3 children, I have suffered multiple miscarriages, and these I believe were nature’s way of natural selection. Also I too have friends with a child with similar disabilities and I have witnessed the impact that this situation brings to a family.
    Yes these people find a way to live... but at what cost...?

  • Comment number 41.

    Some comments suggest that "we" should or should not medically intervene in these kinds of cases. My point is that it's 100% up to the family whether to intervene or not - it's an entirely personal choice and nobody's business except theirs. I'm so happy for the parents that they enjoy a vibrant loving family life together, and that their wish for children came true.

  • Comment number 42.

    The widespread use of IVF seems to be just another manifestation of a consumer society - a sense of 'rights' and entitlement beyond reasonable expectation. IVF produces statistically higher adverse birth outcomes and places an incredible drain on healthcare resources, simply because of this mythical 'right' to have a child, whereas a child is privilege. All I read in this blog is that two children are severely disabled because of the 'right' to have them. Sometimes, Mother Nature knows best and we should listen to her more often.

  • Comment number 43.

    I came across this blog by accident and was saddened by the heartbreaking journey that these parents found themselves on.
    I have never commented on a blog before but felt compelled to do so by some of the apparent ignorant and narrow minded posts. These children aren't disabled as a result of IVF, nor were they brought into the world knowing that this would be the outcome. This is a story about 2 parents doing everything that they can for the children that they desperately wanted and brought into the world, about making the best of the hand that has been dealt them and offering their children a positive and fulfilled life. Life is precious and disability could affect any one of us at any time, so people have no place judging these parents. Thank you for shaing your story and I wish you well on the rest of your journey.

  • Comment number 44.

    @42 dangermouse

    You're missing the point; or being deliberately selective with your bile. Our case and that of the blog author relates to IVF in the sense that it was involved. In our case it was pre-eclampsia which caused the problem (something that still happens in ~10% of pregnancies, 'natural' or IVF) followed by the problems associated with the prematurity.
    Re. the 'rights' and IVF, what of the fertile parents at risk of having a child with a severe, fatal genetic disorder? IVF technology shouldn't be used to, say, screen for embryos which won't suffer from the disorder?? There's probably a discussion to had re. IVF but we're talking shades of grey here rather than your black and white.

    Your 'Mother Nature' comment is, well, absurd. Perhaps we should let Mother Nature take Her course whenever someone is taken ill? What about the stroke victim? The diabetic? The baby born with something like cystic fibrosis? The cancer sufferer? Malaria? HIV? Polio? Flu pandemics? Etc etc etc etc.
    Been affected with any ill health yourself? Know anyone who's had a life threatening problem? Medicine shouldn't do what it can to save the lives of such people or ameliorate the suffering of those it can't save?

  • Comment number 45.

    @ 42 - Dangermouse

    So, in the case of a woman, such as myself, whose husband is infertile, are you suggesting that Mother Nature is dictating that should find another man, have a quick romp with him behind the barn and hope for the best? You might believe that my case is the exception, but, male infertility is quite common, and sadly, there's not much you can do about it. Yes, there's always the sperm donor route, but many men have a hard time accepting this, and raising a child that is not genetically theirs.

    I really enjoyed this article. I love reading stories about couples who really want children and are able to overcome whatever obstacle to have them. For those of us currently going through the 'fun that is IVF', it's a good source of encouragement. Thanks again for sharing your story - I'll do my best to keep my spirits up.

  • Comment number 46.

    I have played football with James (the author) for years. He has made me run, made me swear, made me proud, but never made me cry. Until I read this article.
    James, you are an inspiration on the pitch, and you are an inspiration as a dad. I'm proud to say I know you. Your children are very lucky.

  • Comment number 47.

    You are a real inspiration for many. Your children are very fortunate to have a father so loving and considerate as you and wish I had been there to see Thomas' face when you crossed the finish line. Life is a wonderful gift in any shape or form.

  • Comment number 48.

    This is a great blog post, It really brings it home that there are certain things in this world that are really important such as family. One of my good friends had a relative who had to under go heart surgery which is again can be life changing. I found a great website with lots of information about heart surgery - http://www.thekeyholeheartclinic.com/keyhole-surgery/

    Horatio T Burns

 

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