Friday, 8 June 2012

An Angel in Heaven and Angel on Earth

This morning as I lay in my bed with my beautiful Amber, she reminded me that she knows so much, as we laid there, both facing the window, I whispered in her ear that I loved her, she turned around to look at me and gave me a kiss before turning back quietly.  Today is a very poignant day today, it is the day that two years ago my beautiful god-daughter (little Cousin) Bethany lost her life to a brain tumour aged 5.  The actual day was very much like today in the UK, wet and windy.  I had driven to oxford to be with my other family members the night before as we knew that it was time.  I remember whole night before, the drive up, the time spent with her in Intensive Care, and the time when we took her to the hospice where we all saw her take her last breath.  It plays in my mind like a video-tape, like it was yesterday.  You never expect to see a child leave this world, and this is something that I hear so much about due to the world I am in bringing up a child with a profound disability.
Bethany was such as special young lady, I was her first visitor and took her first photo, which still hangs in her mothers house, when she was born and when I left the hospital I went and bought a pregnancy test which confirmed I was pregnant.  So not only was it the day Bethany was born but also the day in which I knew I was expecting another special Angel.  

I remember visiting her on the day we were told that her tumour was likely to be terminal, I had travelled there with my Mum and Dad as I just had to see her.  When we left the next day, Bethany just kept hugging me and kissing me as if it was the last time I would see her.  Of course it wasn’t and she fought a brave battle around 18 months in total.

She was always such a caring and thoughtful child.  A couple of weeks before she died, she was watching Amber who was sitting on the floor shaking her head rhythmically as she likes to do, at this point Bethany, who didn’t speak a lot around us at that point in her illness, look-up to me and said,  “Carol-Anne, why can’t Amber talk”, I said “because she is special Bethany”, she said “but how can she tell you when she wants some sweets?” I replied “I just know, because I know her so well and understand her”, Bethany just looked at me, and said “Oh ok” and carried on eating hers.   Bethany loved being around Amber, and I believe she is still around her.  This morning when me and my girl laid in my bed, I told her that today was the day that Bethany died, and Amber listened intently, then although she was lying on her side was looking above her as if she was listening to someone.  I am sure it was our Angel in Heaven talking to our Angel on Earth.

As I travel this journey with a child with CDKL5, it is like a journey of discovery I am learning so much everyday, being surprised by abilities of our kids on daily basis.  As parents we often say that Absent Speech is a feature of the condition, however, its amazing how communication come in so many forms and not just speech.  The other night Amber got off the Sofa and walked me back to her bedroom, because she wanted to go back to bed, then two days ago when everyone was enjoying themselves in the hot tub, she walked me outside to be with them.  We have to listen, it is not in the traditional sense, its more listening with our eyes, our senses, our hearts.   I am "listening" to Amber and understanding her more and more each day,  I know she has intellect, courage and compassion for her fellow human I see it and sense it.  One day last year, I was frustrated with her when I was trying to feed her, she could tell!  Later that day, as I sat with her, I apologised for my frustration and she turned around and grabbed me around the neck and kissed and hugged me as if she was telling me, "Mum its OK, I understand" it was so deliberate and of course had me in tears.  She understands emotions so well.  I like to think that as she lays awake at night (sleep disorder) that she is being taught by the people we can’t see, or at least I like to think that she isn’t alone in the darkness.  I have heard lots of parents of special children say they are sure their child has a special friend that they cannot see as they stare and look intently at something or someone we cannot see. 

I would like to dedicate this post to my girls, Angel on Earth, Amber and and Angel in Heaven Bethany.  Two days before Bethany died she sat on Simon Cowells lap and sang twinkle twinkle little star, and it then seemed that in a twinkle, she was up there with the stars.  Love you my beautiful Angel always.

Thursday, 17 May 2012

Amber the Queen and I

Wow what a couple of months we have had.  Amber's walking has come on so well, she has even taken independent steps, and is going from strength to strength.

However, the highlight of the last couple of months, has to be Amber being asked to present, Her Majesty the Queen Elizabeth, with a posy in our town, as part of her Diamond Jubilee Tour of the UK.  I had written to the District Council when I had heard that the Queen was visiting last year, and had a letter inviting Amber, in respect  of her being such an inspiration and representing children that are not afforded good health and mobility.  We had to keep the secret for a couple of weeks which was agony, but we made it.  We ordered her a beautiful dress from the USA, in CDKL5 green.  On the day she looked absolutely radiant like a serene Angel.  What was the best thing, is that she stood for the Queen and walked a couple of steps to hand over the flowers.  The Queen was pleased that she is now up on her feet.  Having shared her pictures and her story online, I was amazed at how many people shared the story from as far away as India and Pakistan, as well as Australia and the US, it seemed that she inspired so many families and gave them hope.  My Mum and Dad are getting together an album with the photos that we have collected and the official invite.  It got me thinking about her future, it's funny how something so beautiful can make you think of the future.   I said to my Mum that we had to make something really nice, because one day when she is in residential care when she is older, this will be something that everyone will want to see "the day Amber met the Queen", I actually have tears writing this, as although I know what is likely to lie in the future, she is my beautiful little girl and I don't want to think about what will happen when I am gone. 

However, there is something that keeps my mind focussed and lifts me when thinking of this.  A Mum of a little boy in Ambers class who has taken a shine to her, is Jewish, his Dad was talking to his mother who lives in Israel, and she said to him that "a queen is appointed to do good work by God, it is all in the bible" the little boys Mum said "it's almost like God wanted to get close to Amber on earth and he did it through the queen", I am not a particular religious person, but this has resonated through me since she told me this.  I cannot rationalize how well Amber has done in the last year, apart from her unfailing and sheer determination to succeed, it seems like a miracle and that someone definitely is helping from higher ground.  I will always remember what I was told for as long as I live and I hope it will get me through bad times and enhance the good times, and will always be thankful for a little boy's Mother and Grandmother who could see the beauty of the events in such a wonderfully, spiritual light.

There was a time that I thought she would never walk, now she has taken around 10 independent steps, stopping half way, she has started to feed herself, she is self aware, she has managed to use a eye-gaze electronic communication device, albeit it fleetingly, but there is promise.  Last night I dream't that she spoke, she said in the sweetest voice I ever heard, her name, she called me mum, and she said a little sentence which although was babble it made sense.  I truly hope this is the future for my little girl, but if it isn't, at least I know that she can visit me in my dreams and speak softly in my ears.

Sunday, 26 February 2012

Making "Strides"

A lot has happened since my last post.  Every  time I thought I would write one, something else cropped up and I thought I would wait!!  Health wise Amber has been well, she attended a Gastroenterology appointment over Christmas, and it was decided that after all she should be referred to GOSH to see a specialist in Bowel Motility problems in children.  He also conducts a lot of research, and I hope he will find the features of CDKL5 interesting, it is very likely that he will not have met a child with CDKL5.  Cardiac wise, we had the results of her 7 day heart monitoring which showed some worrying events.  The cardiologist could not explain what was happening so is seeking advice from others, and some of the Mitochondrial Specialists in Newcastle that Amber has seen in the past.
After Christmas Amber attended Footsteps Physiotherapy Centre in Dorchester on Thames near Oxford.  This was a three week block of two hours a day, one hour specialist therapy that works in a neuro-rehabilitative way, and the other hour traditional physiotherapy, she had 14 sessions.  It was hard going, but my husband and parents helped by taking it in turns to do the driving and attending the sessions.   The stress of trying to get a profoundly developmentally delayed child to work and to be motivated was harder to endure than I thought.  But boy, am I glad we did!! when we finished the sessions, Amber was starting to take her own weight through walking with one hand held.  Luckily for us, Amber goes to a fantastic school, and when she returned back, I explained and demonstrated everything that Amber had been taught.  They now walk her (holding one hand) everywhere.  Her development has soared, not only her strength through walking, but some of her autistic traits that she had, like head shaking, and playing with hands, and also “switching” off has improved.  She has also started to be motivated during feeding and has started to use the spoon herself. 
I suppose this weekend has to be the pinnacle.  We went to the seaside yesterday and for the first time in her life I was able to walk hand in hand with my beautiful girl along the promenade, the feeling was immense, I was so proud of her, and she enjoyed it, I could see that she was taking in everything around her, the sights, the smells, the people, and “sea-gulls”.  Then today, we walked hand in hand into a shop.  As we walked through she was touching the clothes with her free hand, which demonstrated that she was "taking" it all in.  Wow what a clever girl.
I know that Amber will walk, but if she doesn’t it’s not the be all and end all.  The  greatest gift she has given us in these last weeks is her personality that is shining through like the brightest star, people often say that we are given Children like Amber for a reason, she motivates me and inspires me every day, and I know she motivates and inspires others, so I know in my heart that is true and I never question it even in when my day is not always going as it should be. 
This is my favourite poem and it shows how people see disabled children, but I know for sure, that my little girl has found a way around her disability, she tells me in her own way how she is feeling, she tells me how much she loves me everyday by the kisses she gives me and the intense gaze into my eyes, she tells me when she is not happy and when she wants to be alone.  Most of all she tells me SHE is LOVED.  She is a disabled child, but there is so much more to her than than that.  She is our "star".
(Author Unknown)
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

Friday, 16 December 2011

Disney is key!

I haven’t posted in a couple of weeks!  Amber had her 7 day heart monitoring and we haven’t heard anything as yet, although we had the clinic letter which I would say has sent the shivers through me to say the least.  I think however, because it is the fear of the unknown, for the last 6 years it has been neurology so the heart thing is all very very new and I definitely feel out of my depth.
She is up and down health wise, and it really is a mystery.  I am lucky in that I have a wealth of knowledge through the touch of a button, the Neurologist, the Geneticist, and even today the Specialist Geneticist that is instrumental in informing medical practice.  So today I called him at his request and as he always does he eased my pain, and to quote him “keep an open mind”, its refreshing is it to hear that from a world leader in his field because in the Medical profession this is not innate.  However, again, somehow he has brought me back to focus!
On a personal level, however, this week has seen the mini make-over of Ambers bedroom, she has grown from a baby, and is now a young lady.  However the clearing of her things, her baby things, her toddler things, was somewhat emotional.  Well huge and irrational emotions came to light.  I mean I blame Disney! As I tossed some of her first cuddly toys on the pile, I started to think, well actually Hedgey Hog was the first toy she loved and loved to bite, and pick-up, and princess doggy we loved to snuggle her at her face…….. So yesterday was a blubbery day, I couldn’t help the tears as I delivered two bin-bags of clothes and toys and belongings to the charity shop to hear the lady say “a little girl will be so happy to see all these things”, my little girl had all those things, they may not have made her happy because she might not have known the significance.  I wanted to scream that my child was special, because she is, but I left with a heavy heart, as I wanted to share it all, but I will, believe me I will, when this season is over!  Amber and I will walk into that shop and show them what happiness is! 
But you know, every Christmas as sad as it is, that I am not buying her dollies and Sindy dolls, is that she brings me the best present ever, her love, and her smiles, and unconditional love forever J  What a fantastic Christmas present I get, and its every day!, my heart is bursting. 
Merry christmas to you all. xxxx

Monday, 5 December 2011

My Precious Heart

I haven’t posted in a week or so!  Because there was something that happened last week that had me stopped in my tracks. 
We went for a follow up appointment from some extensive investigations that happened in September during a two week admission in Bristol Childrens Hospital which involved every system in Ambers body, ie neurological, gastrointestinal, respiratory, cardiac, and dietary!.   There was nothing that could have prepared me for what happened next!  I thought I knew everything about Amber’s health problems, and although I requested a cardiac work-up, I left the appointment in a daze of shock and disappointment.  When we arrived at the clinic Amber was given an ECG and an Echocardiogram, an Echo is a procedure that looks at the structure of the heart, the blood flow, the thickness of the muscles etc using ultrasound technology.  I already knew that Amber had a small anomaly that I was told about by a nurse when she was two but was told that a lot of the population live with it, and that unless she was going to be a deep sea diver, which she wasn’t, then there was nothing to worry about.  Except what I was told last week, is that in fact, she has a hole in her heart, and not what was originally thought.  Amber also has an anomaly in the beating of her precious heart, and at times her heart beats extremely fast called tachycardia.  We are lucky enough to have a great cardiac consultant that listened intently to the clinical history given by me about Amber, and was also interested in genetics and cardiovascular problems.  He was pumped! Excuse the pun….. to ensure that he gets to the bottom of her problems.
Although I asked for the referral and testing it came as a shock that we were adding Congenital Heart Defect to her list of conditions.  It felt strange that no longer was I liaising with Epilepsy Nurse specialists, but was also being given information about the British Heart Foundation from a Cardiac Nurse Practitioner.  What makes me angry, however, is that earlier this year, when these cardiac symptoms were at their worst I was seen as slightly neurotic by the local health team at our regional hospital.  I am desensitised to her extreme seizures, as I have said in a previous post, but when you walk into your child’s bedroom, in the middle of the night to check on some weird noise that she has made, and you peak through her bed sides, to see that she is staring at you, eyes wide, and not moving, and you fear the worst………. The shock is horrendous, and you look intently, stopped in your tracks, till you see her breath.   In July Amber was admitted to the local hospital for 36 hours of cardiac monitoring, following some of these uneasy events, but the monitoring was not followed up, nor was it reported on, in fact it was lost in the ether of wireless cardiac monitoring in our local hospital.  I remember at the time telling the doctor, that if I didn’t follow it up and god forbid she died from a cardiac event and I hadn’t investigated it I would have never forgiven myself, as strong as I am, I would have felt I failed her.  But they failed me as a parent, and Amber as a complex child, I feel they humoured me and didnt treat me or my daughter with the basic level of care that should be expected.
Thankfully, again, I have been given the respect, as a parent expert in my child from our specialist centre.  She is now under the radar of cardiac services, and even if there is nothing that can be done, she will be continued to be monitored probably for the remainder of her life.  We now know that if she ever has to have an operation she will need anti-biotics prior to prevent Endocarditis, a rare but serious bacterial infection of the lining of the heart.
Today I received an email from the Neurologist, saying simply “Amber keeps teaching us all the time!”  Amber certainly does, she has taught me to listen to my senses, listen to my intuition, and to never give up.  She teaches the medical profession to look outside the box, for those that are able, which isn’t always easy!  She certainly does have a precious heart, even more so now than ever before.

Monday, 21 November 2011

Sunshine and Warmth

I was out in my garden yesterday, in south west England, and I was surprised to see that my favourite tree that has moved house with us in the past, and had lost all its leaves in preparation for winter, has started to bud as it would do in Spring!  As I continued around the garden, I could see that the unseasonal weather we are experiencing was also having this impact on the Camellia’s, the Roses, and other summer flowers!  What was more astounding is that we are still harvesting tomatoes from plants that are unprotected from the weather! 
Isn’t nature just odd!  but also amazing.  Trees and plants only need warm weather to bring them to bloom, and so much like human nature too, we all know how better we feel on a summers day with the warmth on our bodies.  If only illness could be cured by only a spell of warm weather, wouldn’t that be good!  It just goes to show, that when organisms are balanced they can grow and achieve when in the right nurturing environment.   I know for Amber, that it only has to take one small thing to throw her off balance.  I see and feel this in her because she is totally dependent on me so it is like her body and well-being is an extension of my own.  Currently she is experiencing constipation issues which have a profound impact on her life, and are not often taken seriously by the medical professionals we deal with.  I have seen older people go through the same pain, those living with dementia who are unable to articulate how they feel.  In all the aspects of her condition, the pain that she experiences with this is by far one of the worst part of her condition.
If only sunshine and warmth could be harnessed and sold as a cure all remedy, then none of us would be afflicted in any way.......... wouldn’t that be amazing!  That is never going to happen, but although Amber has experiences that none of us can truly comprehend, she can always raise a smile and a hug.  I am lucky enough to have my own little remedy, as the sunshine and warmth Amber can give will beat any happy pill that is out there for the taking  :)

Friday, 18 November 2011

CDKL5 UK Launch!

Last Saturday I had the honour and privilege to launch CDKL5 UK at the Rett UK Family Weekend in Northampton.  Amazing!  Not only did I meet the most amazing families and carers, with their loved ones that are living with Rett Syndrome, a condition similar to CDKL5, but I also was fortunate to meet some new families to me that are living with CDKL5 in the UK.  Along with the Dr Hayley Archer, the geneticist based at Cardiff University Hospital that diagnosed us all, I presented, what I hoped was an information talk on what research the International Foundation for CDKL5 Research is currently undertaking.  Also I was able to launch CDKL5 UK along with Sarah, my co-parent in this endeavour.  I have met around 14 families now living with CDKL5 and I am constantly struck by the shear love, dedication, and the beauty of the families, but also how the siblings of these special children react independently with such uniqueness and compassion to not only their sibling but also the other children living with this condition.  CDKL5 UK is so lucky to have such a special band of parents that are dedicated in uniting together for a common cause, to fundraise for CDKL5 UK and for the International Foundation for CDKL5 Research.  We are able to share the highs and lows, and have a family bond that is so hard to describe to an outsider because we have this commonality with our children.  It was amazing to see some families fall into their rightful place in society because they had the opportunity to meet families living in a similar way, if that makes sense ;)