‘Sometimes the smallest things take up the
most room in your heart’: a
quote by Winnie the Pooh ...
 |
| Scarlett Clay with her son Knox |
... so
starts Madelaine’s film on her brother Knox, who has Cockayne Syndrome, and who
I was privileged to meet last year.
He was born with this
disease, he’s done nothing wrong – he’s about as innocent as they come ... one
has to wonder – why? Why, would this
happen to such an innocent child and how does one ever react to a disease that
takes life so quickly.
That’s
what Madelaine wants to know: Why ...
Why Knox? Why other young children with CS? Why me? Why us?
 |
| Scarlett's Butterflies in the making for her Etsy shop cards |
When my
mother was ill and I understood she could live ‘for years’ – I too thought why
me? Also why my mother ... who had done so
much for others all through her life.
As
Madelaine discovers ... the why me? turns into “ok – now I understand” ...
their illness is for me to learn from, and then to help others understand,
illness comes in all sorts of ways at all times of life – we know not when ...
Cockayne
Syndrome affects a miniscule minority of people in the world ... but it affects
many others ... and especially as they
have a tragedy to journey along with ... there is no cure – only ease of
symptoms as best possible.
 |
| Rusty-tipped at Florida Butterfly Park |
Madelaine
realises she needs to find out the purpose for the disease ... before Knox goes
... while in the meantime she needs to spend as much time with him ... as every
moment is precious.
Death
is always real – it’s how we live life while we journey with our loved ones to
their ultimate destination ... that shock that comes, which is expected, but is
unexpected ...
...
Madelaine wanted to find out what she and her family are going to go through
when Knox does die ... it is a courageous film of enlightenment ...
 |
| Butterflies and sunshine to bring smiles all round |
... to
me there were parallels with my journey – the loneliness, the lack of
comprehension – yet I was lucky that my mother and I could share those last
years together as much as possible – it was not ideal, yet there was a lot of
good that came out of our journey ... which continues on today.
Madelaine
has found that the struggle is worth it ... there is some good coming out of
her journey with Knox ...
... the
friends she has met (in real life + via FB) through the Support Groups:
Amy and Friends Support Group in the UK, and the Share and Care CockayneSyndrome Network in the USA ... and being able to meet up at Morgan’s
Wonderland, San Antonio, Texas – an Amusement Park for Special Needs' Children.
 |
| Sveva, Madelaine with Knox, me and Scarlett, Amy of Amy's Friends in her wheelchair with another star of the film on her lap |
Through meeting
other CS children, their parents, their siblings and associated friends and
family, Madelaine was able to get perspectives on and insights into their lives
...
... and
after having realised that all the CS children were essentially happy – they
have friendly personalities – this was confirmed in her discussions with the
specialist doctors, who thought it was a characteristic of the disorder.
So how
are we to think about those serious illnesses we have in our families ... be
they end of life, or at a much earlier time in our anticipated life expectancy
... what is that reason that we travel with our loved ones ...
 |
| Sponsors for the Amy + Friends British Support group get togehter 2012 ... Scarlett's Art is Medicine first on the list |
... to
teach us life is so short, so fragile ... each flutter in a butterfly’s life is
but a moment, yet is so precious for their life-time ... for us too ...
...
illness teaches us patience, to love our loved one, to enjoy life as it is
meant to be with everyone we come into contact with ...
... for
CS children: they want you to love them ... it is almost as though they know
what’s going on ...
...
this makes you think ... love is, it just is ...
L o v e H a s W i n g s ......
I hope that you will be able to spare some
time for Madelaine and her film ... I know it is 29 minutes long –
but frankly ... if you give it some of your time you will appreciate her words through the documentary she made for her brother.
Her
words and the film will come home to roost sometime – I guarantee it ... if you
allow these emotions in to your life ...
Madelaine
is 18 – and I think has done an amazing job ...
Love Has Wings is an incredible testament to Knox’s life ... and her ability to work out for herself ... that reason why.
Love Has Wings is an incredible testament to Knox’s life ... and her ability to work out for herself ... that reason why.
This is
a courageous film made by a loving sister, and definitely worth a watch ... you
will learn: I did.
Love
Has Wings: YouTube: https://www.youtube.com/watch?v=NiC9tYXdr0E
 |
| Blue Purple and Scarlett butterfly c/o www.fanpop.com |
Scarlett
Clay’s website: Blue Purple and Scarlett
“LoveHas Wings” Student Documentary ... the film is so professional and so deserving of
recognition ...
FaceBook
Page : Art is Medicine – Scarlett’s page as Art is Medicine ... in so many ways
...
My post
in October http://positiveletters.blogspot.co.uk/2013/10/amys-friends-support-group-and-scarlett.html
Knox has gone to the Butterfly Heaven: Rest in Peace 14 July 2010 - 01 February 2014
With so many thoughts of love to Scarlett, Brandon, Madelaine, Sveva and Jack ...
Hilary
Melton-Butcher
Positive
Letters Inspirational Stories
60 comments:
Knox has a remarkable sister.
Getting them all together showed all the families that they are not alone.
Even the most negative things have a reason ans something we can learn from them. Learn and share to make the world better.
Thank you, Hilary. I will make time for this film.
Love,
Janie
Could it be that we learn how precious life is because of our interaction with those who have congenital disorders. Our son was a spina-bifida child. He recently turned 43. He lives independently in another state and holds a full-time job. We had some tough times during the time he was a child. But, God saw us through those times.
@ ALex - you've summed up these aspects so well .. and yes, Knox has a wonderful family - the film is quite incredible.
The 'family groups' do provide major support .. everyone has similar challenges and can help each other.
As you so rightly say .. even negative things can inspire us while we learn and appreciate those around us.
@ Janie - I'm so pleased you'll make time for Madelaine's film ..
@ Cecilia - good to see you again .. and I'm sure you've got it right .. especially after your experiences with your son. I'm so pleased he's doing so so well ..
Thanks for your comments - Hilary
Oh gosh Hilary. This is just precious. Madelaine is a beautiful soul. I am so sorry for them though. I know what it's like to have a child with a rare disorder. Thanking God I still have my Christopher. I don't know what is around the corner though.
Thanks Hil. I'll never ever forget Knox or Madelaine. xoxo
Lovely Hilary!! I will totally watch this film - of course I will!! Your beautiful write-up of it has totally drawn me in, thank you! Take care
x
We had a special needs person live with us for almost four years. They just left yesterday morning to live in another home.\
This was our gift to the world. Hopefully we can help make a difference, one person at a time.
Just lost a 14 year old friend's son and I question this myself sometimes. There really is no answer - you just HAVE to HAVE faith! sandie
Thank you for sharing this. Having a child with rare disease is difficult beyond words, because what we want to do is "fix it," and we can't. We do the best we can, sometimes not the best as we struggle with our own fears and doubts and anger. My grandson has autism. What his future holds, I do not know.
(Prince Charles is on his way, I thought he was before this, but the customs form was not filled out, etc., but now he is winging his way to you.)
Stories like this always bring me to reexamine my own attitudes and feelings about life - what I'm blessed with and how I let minor annoyances stand in my way. Thank you for spreading such beautiful messages, Hilary.
Madelaine sounds like an amazing soul and a truly beautiful person. This really puts life in perspective doesn't it? Really makes a person re-examine things...
@ Robyn - many thanks for your comment and from your understanding through Christopher's own struggle .. Madelaine's film expresses her experiences so very well ..
@ Old Kitty - so appreciative of your comment and knowing you will watch the film ... such a thoughtful presentation.
@ Stephen - your family is amazing at how you help others .. and how coincidental your special needs friend went to a new home just this week ...
You certainly do much for the world .. and it is doing just a little all the time isn't it ..
@ Sandie - you reminded me at about 14 I lost a friend at school to leukaemia ... I just didn't understand - except they'd gone .. as you say we need Faith. I hope you are able to watch the film.
@ Tasha - when the 'crisis' happens be it at birth, or some other sad stage, or end of life as with my mother .. we aren't able to comprehend ... I've learnt so much in these last few years. Madelaine's film made a lot of sense to me .. I just admire her so much.
I'm sorry about your grandson's autism .. I hope he can have a fulfilled life .. he has much to offer and I hope that will be allowed to develop. My thoughts for you and the family ..
Prince Charles has arrived and I will email you in a minute! It looks a very interesting book.
@ River - what a wonderful way of thinking about things .. and your words are wise ones .. we don't usually reflect on stories we hear - and understand the deeper pointers that are being given.
@ Keith - Madelaine, as do all the Clay family, stand out as amazing people ... in the way they have embraced Cockayne Syndrome and now through the film have opened our eyes ...
Yes - I hope we will be taking time to reflect on this post - the film is so well worth watching.
Thanks you so much - it is lovely to have comments with meaning and appreciation of Knox's family and their journey .. I appreciate your thoughts - Hilary
Madelaine sounds a remarkable young woman. It's amazing how some people are able to see the good in any situation and take something positive from a tragedy.
This is such a beautiful post and shows the love of Valentines Day that we should carry in our hearts all throughout the years. I will certainly make time to watch the film. Thank you, Hilary
Mmm. I had a special needs brother, and it was always a busy struggle to take care of him, until he wasn't there any more. It's so true, they're here for the rest of us, to teach us the lessons we can only learn through service to them.
Illness raises the questions we would never ask otherwise. It can change us in beautiful ways. I look forward to watching this film.
I don't know if you got my comment on your last post, but I dedicated a little something to you on my Thursday post last week. I hope you like it:)
Hillary, your eloquent sensitivity and compassion touched my heart in so many ways -- I'm off to YouTube!
I had never heard of this disease before your post. Thanks for sharing this touching film.
Thank you for this post, Hilary.
I have the same questions.
I have the same thoughts and I've had some of those thoughts when I lost my son.
Love is always challenging us, and we have to keep going as best as we can.
Thank you.
I wish that every one has a sister like Knox. She sounds amazing.
@ Patsy - having met Madelaine she and her family have such qualities .. you've highlighted an important aspect - that good can come out of a tragedy, however odd that may sound.
@ Manzanita - I know you'll enjoy the film and appreciate your thoughts ..
@ Crystal - I'm sure you learnt a great deal through your brother ... which you point us to here we can always learn through our service to them.
@ Robin - thanks I did pick up (finally .. sorry couldn't find your dedication) that part of your post dedicated to me ..
Illness does challenge us and thus change us .. I'm sure you'll appreciate the film ..
@ Kittie - so pleased to know you will be or have watched the film ... and I appreciate your comment.
@ Rosaria - the syndrome touches a few, but Madelaine certainly brings the disease to the fore for those families who are touched and affected by it.
@ Julia - I am so sorry to know about your son - and it is interesting that we all have the same questions ... as to why.
We have as you mention to work out the why in our own very difficult circumstances ...
@ Munir - Madelaine has done Knox a huge service for his condition ..
Thanks to you all - I hope you will get a chance to see the film .. Hilary
Thank you Hilary - I'll definitely watch it at home. (At work right now.)
What remarkable spirit - everyone in that family.
Such and KIND and GENEROUS soul. God bless Madelaine, Knox, and her their family.
Life, sadly, hands us many crosses to bear. We all get them in one form or another. Some heart-wrenching and tragic. But, as Madelaine, and her family have learned, there are reasons. We may never understand them, but we need to help anyway we can to get through these situations.
In my early thirty, I was hit with crippling arthritis. I couldn't understand WHY it had happened to me. What lesson could I possibly learn from being bedridden for a year, and taking over a decade to walk normally again.
Yes, I still have arthritis, but I learned to live with it. Now it's in my hands and fingers. Why? It's part of life. It's amazing what the human spirit can endure and sill survive. I learned to cherish EVERY happy time. Friends, family, and extended family mean the world to me.
Cherish EVERY MOMENT WITH THEM.... Life is just the flutter of a butterflies wing ... so true.
Thank you, Hilary for sharing Knox's story with us. Madeliane. You are a special and very gifted young woman.... NEVER lose your heart!
What a precious little soul. So many things in life feel unfair. I think if we spend our time trying to figure out why then we will miss out on wonderful people and happenings.
This is a wonderful tribute!
@ Lynn - that's lovely to hear you'll take the time watch at home at some stage soon. They do have great spirit don't they .. it shines through.
@ Michael - thank you so much for your lovely comment. Sadly as you say some suffer in ways we don't understand .. and you've had your fair share ... arthritis is very challenging - but you have that mental strength and pulled yourself through. It's never over, but as you say you've managed to learn to live with it.
Cherishing each and everyone of our family, friends and all peoples can only help us, as well as allowing others to benefit from our freedom of spirit ..
Thanks Michael .. like you I hope, and feel certain, that the Clay family will give much to many - Madelaine has many talents ..
@ Teresa - he and all the other sufferers are such precious souls.
You are right about so many things in life apparently being unfair .. and if we dwell too long we miss much ... it's a good point.
However I know at times I reflected and tried to make some sense of the situation .. it certainly helped as I had some understanding and just realised my mother's last days, however long, were there for us to share as best possible.
Thank you for your thoughtful comments .. our blogging connections always have amazing insights into life .. Hilary
I will get back to this film and watch later.
Thanks so much for the info and links, Hilary. It's hard to not understand circumstances, but I agree with you - we can always learn something from life's challenges.
Blessings to you and your readers,
Karen :)
Madelaine sounds like a wonderful person, and an exceptional sister. I'm so sorry for what her family is going through. Thanks for sharing this, and I will try to watch the film later today.
Julie
@ Jo - it's so well made and will enlighten you to many things .. made me think certainly.
@ Karen - it is so difficult that 'why' in those difficult circumstances ... but if we can get give ourselves time to think there is an answer out there and yes, we always learn.
@ Julie - the family were quite delightful and I'd love to meet up with them again .. so talented too. I'm sure you'll enjoy the film, it has been made with a happy positive outlook ..
Cheers and thanks so much for coming by and commenting - Hilary
Thank you for sharing about Madeline and her brother Knox. Madeline sounds like a very caring, loving sister. I'll make time to watch the video.
Thank you for this post, Hilary. It gives me pause that children with CS are typically friendly and happy. Brings to mind that Special Olympics event, think it was in the '80s, when one participant fell during a race and all of the other competitors stopped running and went back to help the fallen one up.
Wow, that's so true! We often do think in terms of "why me", instead of finding every possible positive side we can.
It's hard to look past our sufferings and do that, though.
Lovely post. Hilary! I would check this film out, too. Thanks for sharing about it.
Nas
One of the things that jumped out at me regarding this post is what you wrote about CS children being happy and having friendly personalities.
Even if their lives are shortened, it's almost as if they are a gift of joy for those who live with them. This isn't to take away from the challenges and the pain of loss, but you made see there is something special, which continues in those they touch...like Madelaine,her family, and people like you.
But that's not all. It like ripples in a pond, the wisdom spreads. So, you write about Knox and CS, as well as your own experiences. Then, the people who visit here are touched by this wisdom, which comes from from knowing Knox.
Hilary -- I watched the entire video. Of course, it's hard to speak right now because I'm crying, but you are so right. It was beautiful and the message Madelaine left me with was full of hope.
Thank you for introducing me to this wonderful young woman and to CS -- children who may have short lives, but who fill others with their happiness and joy...kind of like butterflies:~)
How heart wrenching. It makes me think of how lucky I am to have two healthy children. "...every moment is precious." even when we believe nothing can touch us. I'll definitely take time to watch this film. My heart goes out to Madelaine, Know and their family.
The story sounds so courageous and honourable. I couldn't finish the video because I'm emotional right now; not sure why. Thanks for sharing this story, Hilary.
I'd never heard of Cockayne Syndrome. I will definitely make time for a loving sister's film.
I'm very touched by your post and your caring. Life is, indeed, fragile and fleeting, so we should be reminded of that. Thank you, Hilary.
Hi Hilary, I just watched the film, and was deeply moved. My heart goes out to all of the families who have lost their children to this horrible disease. I applaud Madelaine for her courage in making this film, and her ability to have a positive outlook. She has taught us all an important lesson, and I have a feeling that her job has just begun.
Julie
@ Susanne - I'm sure you'll enjoy the video albeit it is sad ..
@ Suze - I was interested that Madelaine commented on the CS children's apparent happiness with life ... the video reflects this.
I hadn't heard about the ParaOlympics / Special Olympics event .. I was in South Africa in the 80s .. and tv reporting was minimal. But what an interesting story .. there was no competition as such - just a need to help so they could all finish. Thanks for this ...
@ Misha - it's always a shock isn't it .. so the 'why me' is understandable .. yet there is a reason if we allow it to come to the fore.
Exactly as you say .. it is difficult to look past our suffering and do that .. I had difficulty at times.
@ Nas - good to see you .. and am glad you'll be viewing the film.
@ Sara - when Madelaine was doing her research .. this came through from the parents, the doctors and family ..
Their lives are shortened yet they have that gift of joy ... and you've described it so well - we do see things differently ...
I found it interesting that I was able to relate to my experiences with my late 80s year old mother and be able to cross the years with Knox and the Clay family's experiences ... I'm glad you picked that up.
@ Sara - now you've watched the film - I'm glad you were able to see what I saw, and what I found when I met the family when they were over from the States last year.
Knox and other CS sufferers are like butterflies ... a brief moment of delight in our lives.
@ Elise - yes so often I look at myself and think I'm lucky, even in times of adversity .. so as a mother you'd be able to see that.
Thanks for making some time to watch the film .. you'll enjoy it .. it is full of hope, as Sara says.
@ Joylene - Madelaine and the family, particularly Scarlett their mother .. they are amazingly courageous people. I can understand your emotional feelings - we get these for reasons we cannot understand. I appreciate you being here and commenting ...
@ Lee - thank you .. the film is so well made and so evocative, yet full of hope and love ... particularly love.
Thanks for your thoughts here ..
@ Julie - so pleased you took time to watch the film ... Madelaine has done an exceptional job ..
... and you are right: I'm sure her work has just begun - she has shown some amazing qualities in making the film .. with her thoughts, photography, interviews etc .. it is a work of art, professionally done .. and by an 18 year old ..
Thanks for coming back and letting me know your thoughts ..
Wonderful to see you all here and read your thoughtful comments .. life is not easy ... but positives can shine through - when we're ready .. Hilary
Knox is lucky to have such a wonderful sister and family. A support network is invaluable.
I have linked to the video to view later this evening. Thank you for sharing such an inspiring young woman and her story.
Oh, and belated blog birthday wishes!
Each child is a special gift and to be treasured each moment of life. It's so hard to lose one, but there is joy in the knowing and loving, and God can bring good into other lives through their short ones. Thank you for sharing this lovely post and video, Hilary.
Wow! What a moving post. I must watch the film.
@ Annalisa .. the family is very loving, while the CS support network is small but very caring.
@ Glynis - I'm sure you'll be inspired by Madelaine's film
@ Connie - lovely to see you and yes every child is a precious gift .. while everyone's life can offer so much positive - I'm glad you enjoyed the post and video.
@ JJ - thanks .. I'm sure you'll be inspired by Madelaine's film ..
Cheers to you all -Hilary
Dear Hils, I'll have to come back and back to this post. This is what I responded to initially:
As Madelaine discovers ... the why me? turns into “ok – now I understand” ... their illness is for me to learn from, and then to help others understand, illness comes in all sorts of ways at all times of life – we know not when ...
IMO this is exactly it--some, old or young, suffer that we all may learn: the sufferer, the care givers. It is under such circumstances, if we have eyes to see and heart to understand, that we learn the true meaning of service and love.
Thanks for commenting on my farewell blog post. I AM looking forward to keeping in touch through email ((( )))
Madeleine sounds an incredibly courageous person. I am not sure I could face what she is doing with so much strength. Sadly I cannot watch the video as our connection is too slow.
Have a good Sunday. Diane
It is so touching to read this story, and the struggle that a parent has when a child is born with a cruel disease. Your support must be much appreciated.
Hi Hilary,
Those are powerful words. Support groups are vital. We have seen, with much dismay, how those who are different, yet so special in their own way, get labelled through ignorance.
Thank you for sharing this important story, Hilary.
Gary
Hadn't heard of CS -- life is precious, every moment. Seize the day.
Blessings and best wishes to Knox, his sister and all that love and care for him!
@ Ann - it's a funny old journey .. and yours has been a challenging one ... but there is always something there for us to draw on. As you so rightly say .. it is the eyes to see, the heart to understand .. and the brain to ensure our loved ones suffer the least possible ..
It'll be good to be in touch ...
@ Diane - I understand the slow connection .. but perhaps at some stage you could watch it - it is so worth it .. and she is definitely full of strength ...
@ Juliet - thanks Juliet - I'm a distant support .. but as you say we, in the blogging world, do support each other so much when needed ...
@ Gary - the words are mostly Madelaine's .. adapted for my post - she is a very fine young lady ... with a world of wisdom for her young years ...
Discrimination is such a difficult word - but just should not exist ...
I appreciate you commenting as I knew you, in particular, would understand ...
@ Milo - I hope you had a chance to watch the film .. it is edifying to say the least ... and most definitely we should seize the day and all those moments ..
@ Betsy - lovely to see you .. and you would and do understand ..
Thanks everyone - I've been in London for 3 days .. back into the thick of things tomorrow! Just so lovely to have all your comments - thank you ..Hilary
Aloha,
Although our family has been lucky that CS (or any other horrible, horrible disease) has not touched us directly, I just to be a beat reporter and always wondered the why question, too...
I guess there is no answer, but I believe a strong faith can at least bring some comfort, which is why I'm always striving to be there for our growing boys... I know one day they will fly the coop and I won't have the chance to play or read to them...
Thanks for sharing, Hilary and prayers and strength to Madelaine and the rest of the Clay family.
The most moving film I’ve seen in a long time.
You did well to publish this post and draw our attention to this unhappy disease, which yet causes such happiness in spite of deep suffering.
Such a generous family to share their story and I hope they continue to get support along the way. Whew. This one took it out of me. I needed this perspective. Thank you and I send prayers up for al.
@ Mark - many of us are lucky ... and I can understand you asking the 'why' question as a journalist - albeit - there's no obvious reason.
A strong faith and just being there is so important for children - loving them as each moment passes ..
Lovely comment - thank you ..
@ Friko - it is just an amazing film isn't it - very evocative and very moving. Madelaine has produced a film of incredible love for her brother ... from which many of us will learn from ..
@ Betty - you are having the unexpected happy change of your life .. and I can see where that thought on perspective comes from ...
Madelaine and family have made a huge contribution to CS life with this film ... even though there is no known cure - at least by seeing the film we can understand where we can get love from in times of real sadness and as Friko says deep suffering ...
Wonderful comments and thoughts from everyone .. Hilary
It is so hard to keep the faith while watching a loved one suffer... especially a child.
This is an amazing film. Thank you for sharing.
Thanks Susan - I'm so pleased you took time to watch the film .. it is an amazing film, as you say ..
Just delighted you enjoyed the share .. and appreciated the film .. Hilary
What a special post. Thanks for sharing with us. I will make time for the film of course. Your words about how to cope with illness really resonated with me today. Thank you.
Tina @ Life is Good
A to Z Team @ Blogging From A to Z April Challenge 2014
Hi Tina - thanks so much .. and I appreciate that you related to my words in the post ... your family has had a difficult time recently - and I feel for you - trying to adjust to others' grief, let alone your own shock and grief, must be very very difficult.
I think you'll find the film uplifting and certainly hope you do ... all the best - Hilary
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