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.

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