The response to the original blog in question and feedback has been fantastic - I have noticed many of you have been reading and it’s been a record breaking blog in the life of LucasWeatherby.com - so thank you all for reading and giving positive feedback.
Feel free to read the comment below - it is somewhat of a short essay in fairness, some 1,700 words, or skip below the formatted text to read my response: I will quote and respond to bits in part.
Lucas, you have written very well, though I can't help but feel there is a sense of anger with you -v-cp! What you have to remember is this, and you have been told this a million times in your life. "You are here! You made it! Your sisters didn't. Unlike you, born very prem, but even earlier than yourself, they too at 26-wks gestation had a fight on their little bodies, and it was obviously God's plan for better things. You have to remember how very very special you are to us, and I don't mind telling the world I once told the late Dr Peter Hope and his team at John Radcliffe Hospital Oxford, I didn't care if you grew another head on your shoulders, as long as you lived! Me and your dad had already lost Frances and Clare the same year as you were born in March, and just before I had conceived them had lost a baby too, only to be told at an emergency scan at 3 months. So when we found out we were expecting you, nothing mattered, as long as you were ok. I certainly couldn't stand losing a 4th baby within just over eighteen months!
Life in 1988 was horrendous for us, and for the first few years following, as we wondered how life would pan out with your health. Not many baby's have gone through having 2 bleeds on the brain,and needing a shunt, (as your photos show). Because this operation was classified as less urgent than your 'nectrolizing entrocolitis' disease on your bowel, as you had poisoning in your blood system, a full blood transfusion and a flush of your small stomach was urgent with them fitting at the same time, an ileostomy bag. We let you go to theatre not knowing if we would ever get to hold you alive again! It was as dire as that! We knew the odds, but it was a life threatening operation, and you would have definitely have died had we not let them do it!
Mr Green told us later he managed to salvage a short strut of ilium small bowel, and as you were a baby you would grow, and so would your bowels! You ended up with an ileostomy bag, fortunately only for 6 months, (I was the happiest mother in the world when they reversed the operation and you filled your first nappy and the nurse saved it for me to look at!!!!) Absolutely true! To me I was elated, it meant the reversal worked! once hunch we had got over for you, and with you. But we were warned that operation may have turned out to be a permanent removal of all your bowels...just depended how bad your necrotic bowel was when they opened you up!...apparently it was like sewing cling film the bowel surgeon, Mr Green at John Radcliffe told us.
Dad & I spent the morning in the chapel at John Radcliffe praying all would go well!...who had the other 4 kids at home at the time, I can't remember!!!! I think it is no secret to your elder sisters and brothers that they took 2nd place in those early days, as we had no parents or grandparents we could turn to or family close by to help out....we relied solely on parishioners! Life was cruel...for you and us! You got over that but within a fortnight of that operation, the hydrocephalus, water on the brain, caused by the bleed on your brain) was swelling considerably, you were dosed up on diamorphine, as we were told off the neurologist that you would be having probably severe headaches. Lumbar punctures on your tiny spine to tap off spinal fluid was done twice, each time you were severely sick...Anyone (Adult) who has ever experienced a lumbar spinal puncture they are very sickly and painful operations. For a premature baby to cope with it, you were just a miracle! The idea was to relieve the pressure as you were too sick to operate on, but desperately needed a shunt fitting. Eventually they did it at the Radcliffe Infirmary Oxford.
Mr Carr the Neurologist who conducted the operation came out to our home in Temple Rd at 10pm the night before the operation to explain the dangers to us. He went into graphic detail, (because I wanted to know how he'd do it), this is not a horror story, and dad will read this and will correct anything that isn't right, but this is very accurate Lucas, it is etched in my brain and heart what you went through! Mr Carr told us he would use a drill to make a hole through your skull and fit the shunt to relieve the water on the brain. It was to drain in your chest cavity as the normal procedure, (apparently), is to fix in the stomach walls, but as you had only just had surgery 2 wks earlier, a risk of infection and it flowing back up the tube into your brain, so it was decided to put it in your chest cavity. That's what the approx. 3" scar is above your right breast bone. You can see clearly the tube to this day running down your neck. I asked when would it be reversed? He told us that there is many a soldier walking about with bits of shrapnel in their head, and it is safer to leave it once it has done its job, than to risk further infection removing it!... That nearly happened when you were 11 wks old as you had an abscess form in your neck and your neck disfigured with swelling, strong antibiotics once again saved your life!
You had your appendix removed at the same time as your bowel op too! and ended up with no belly button and a huge scar right across your stomach and a small scar where your ileostomy was and where your long line was too in your stomach...( a long line is a permanently sewn in tube whilst you were in hospital to administer your drugs, so they didn't have to keep stabbing you with sharp needles! you have one on your right inner ankle too). In between this, I had been expressing my milk on an Egnell Breast Machine for 11 solid weeks and taking it up to the hospital for them to drip feed you 1 mil, 2 mils, 3 mils etc, but eventually you took sick again, and was diagnosed as suffering with Lactose Intolerance.
You had to have some awful, (I can smell it now, it was pungent)! It was called Progestamil Formula, only available on prescription, and chemist had to order it in for you. All that effort of keeping my milk going was to no avail. That had been hard going, I was stressed, I had no baby to stimulate the milk, and I'd be at home expressing it on the machine which took 10-20 minutes, then the same length to drive to the hospital too, all to no avail!....James your middle brother was a fan of breast milk being breast fed for 18 months! I was a NCT (National Childbirth Trust) keen breast feeding mum....but Disappointment you had to have this awful stuff, at least it nourished you and kept you alive...That's all that mattered.
I got my first cuddle on Christmas day, holding you complete with wires sprouting out of you from every direction....2 weeks is a long time for a mother to hold her baby for the first time.
When Dr Hope told me and your Dad, "He's turned the corner (10-wks), he's going to make it, but I am afraid, he's never likely to play football for England" That's what he said, and bombarded us too that it could be 2 yrs. before we'd know for sure just how much your disability has effected you, and couldn't predict if you had been affected mentally....obviously not!
You stood in a flexi stand strapped up till you were 14 months old. You had many many hospital trips and physio, and hydrotherapy treatment, conductive education at the Omerod, and assessments at HEPAC, (Hugh Ellis Pediatric Centre). You were 20 months old when HEPAC told me and your dad after spending Monday to Friday 5 days of intensive specialists looking at you, we stayed at the centre 9-5pm each day and had interviews with the specialists, bowels, brains, cp. specialist,Psychiatrist as you had behaviour problems, speech specialists, hearing specialists, everyone who had ever worked with you were there on different days. It was a centre that families went to for diagnosis and help. It was then that we asked them had you got cerebral palsy, we had waited nearly 2 yrs. for a diagnosis!
My aim and still is today was not to treat you any different, and that meant choosing (and fighting) for you to go to a mainstream school. Some experts in the field of education and your welfare thought you may be best going to a special needs school, but we were adamant we would get you walking, we would make you hard, and not wrap you up in cotton wool...you see Lucas, you had already proved to us time and time again, you were not as delicate and fragile as we all thought...you were a tough nut! You definitely are a walking miracle, and so if you have got to go through life one handed as you put it...its a very, extremely small price to pay for what you have been through. You do have dignity, brains, sense of humour, a heart of gold...please Lucas for your mum, don't dwell on what you haven't got, be thankful for what you do have! You have defeated many many consultants and specialists and amazed them, but we your mum and dad had faith in God that he would pull you through...and he has! We are so proud of you, and that's why i have posted this blog to tell the world you rant and rave, but you have been through hell and back in your life time, and come out on top! Well done!
Love you, Mum xxxx
Response:
First I think it is only natural to respond to my original post in say that:
“I can't help but feel there is a sense of anger with you -v-cp! What you have to remember is this, and you have been told this a million times in your life. "You are here! You made it! Your sisters didn't. Unlike you, born very prem, but even earlier than yourself, they too at 26-wks gestation had a fight on their little bodies, and it was obviously God's plan for better things.”
It is an emotional response to some of the things I have said, which can be perceived as being negative. However in the spirit of awareness and equality, I feel it is only fair of me to point out at the same time that while I am lucky, surpassed expectations and have a lot to be grateful for - which I am - that I wrote in similar vein, pointing out that appearances can be deceiving and that I (and indeed others with CP and disabilities) have just as many, if not more problems than your average Joe Bloggs.
The comment also goes on to explain many of the things I cannot remember or articulate myself because I wasn’t there to understand and record all that happened to me in quite the way my family did. It is easy for me to say “Yeah, well, I’m here now”, but I have to admit, if it were somebody else’s baby, then I’d be impressed at the miracle of science and strength and resiliency of the baby in question. It is sad to report - I feel that this is the right place - that while I survived those crucial first couple of years, David Cameron’s child Ivan, born with Cerebral Palsy and Epilepsy has recently passed away. It only serves as a stark reminder that we are all lucky to be here, not just myself.
“When Dr Hope told me and your Dad, "He's turned the corner (10-wks), he's going to make it, but I am afraid, he's never likely to play football for England"
This is true, but I’d like to share an anecdote here. Years ago, at St. Margaret Ward, I was approached by Stoke City’s Disability Football Club for trials thanks to my PE teacher trying to get me more involved. I was very interested and nearly went through with it. However an upcoming operation changed my mind (the multi-level surgery one), which left me with a metal plate in my left leg. This for the past 6 years left me being able to feel the plate in my leg like a spring and caused pain while walking, climbing the stairs. In September I had the plate removed, you can view my fancy collage of the wound below:
Anyway, obviously since the first operation I was not keen on risking any injury though now this particular risk is gone so in theory I could try and pick it up again. Its been a few years though since I kicked a football so I’m not so sure I’d be anything as half as good now!
“...it could be 2 yrs. before we'd know for sure just how much your disability has effected you, and couldn't predict if you had been affected mentally....obviously not!”
To finish replying to the quotations before my final thought, I’d just like to say that it’s perhaps not so obvious. In the way you are speaking surely. But I’m sure there are some people, friends, with many stories to tell (which do usually involve when I am drunk!) It’s like the Josh Blue joke, the Comedian with CP: “I’m not drunk I have cerebral palsy!” I know it doesn’t fool you Mother, but it certainly has fooled people on more than one occasion - including a chip shop man who tried to refuse me entry before apologizing when learning the fact I have CP, and on the same day avoiding trouble with the police because I was so obviously drunk in public and could barely walk!
Final Thoughts
I don’t wish to overshadow the great effort that many people have grown through for me to keep me going, keeping me actually alive physically and getting me where I am today. But it is important that while I do have Cerebral Palsy, to not treat my grievances in this context as an unfortunate cause of the problems in my life. What I believe to be true rather, is that I am just like any other person - with grievances. Having something life CP only exacerbates these difficulties, just like it does for somebody in poverty or unemployment, or somebody with a family or without food, something with other serious health problems or perhaps even (minor) consequences of human nature in dealing with being left handed in a right handed-centric world. That is what is important and that is what awareness and equality is about: treating me as is, (equal human beings) and yet understand the uniqueness of our own individuality. I don’t think there is any two people with problems that affect them in identically the same way in every form so we must try to emphasize with each person and what they are conveying. So if what I have said appears to be defeatist and negative, then I apologize. There is both good and bad in all our lives and only looking at the good will only achievement a sense of being content or perhaps even apathy within our lives and what life brings. I wish to understand the bad things and bad times as well in order to gain a sense of moral and personal development to become a better, more stronger person - moving beyond contentment/apathy to a stage of self-fulfillment, happiness and enlightenment. In other words, spend more time worrying about being good than looking good, and being a better person, a good person, not just an average person or worse, feeling sub-human, an untermensch.
Thank you for reading,
Lucas.
PS. You will notice now that there is a separate blog theme for cerebral palsy posts. I originally intended to make a series of posts related to the upcoming operation. Given the success of my first blog and through suggestions from readers and looking at my analytical data with Google on this blog, it seems only natural now to take this further. I have also renamed the blog as well so it will be found better by search engines as well.
If you wish to read the original post and comment, you can find it here.
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