My letter to Livvy

After speaking to someone at Cybermummy, I have decided to post this here and not just on my charity website Livvy’s Smile.

My letter to Livvy


Have you ever just sat there and had your whole world change for you? I’m
sure many people have their wedding their birth of their children. I have,
becoming a mom was one of the most wonderful things ever. Nothing could prepare
me for the complete influx of emotions as I held my daughters in my arms. These
beautiful girls, I was going to love them and protect them for their whole

As I sat in that doctors office I had to face the realization that I
couldn’t. Something stronger than I had began a battle I didn’t know for sure I
could win Rett Syndrome. How I hated hearing those words, for months I had been
searching the internet for some answers, the reason that my little girl had to
suffer. I had come across this condition a few times but I wasn’t willing to
face it. I tried to convince myself that it couldn’t be this, nothing that held
the words life threatening could be part of my world, my baby.

It was to be, since that day back in 2001 when it seemed like overnight you
had disappeared. Your words, your smiles, your eyes all left and replaced with a
child who cried and screamed with so much frustration that my heart broke. Your
personality changed, little things became gigantic. I remember your nanny moved
her living room furniture around, my goodness the fear and pain in your face, we
had to leave. Nanny’s house a place you had loved so desperately days before
caused you so much distress, why?

Finally three years later we were getting an answer. In a way knowing became
a little relief, you had come back into our world a little through the years,
the smiles the cheeky behavior returned, but with them came the added torment of
seizures.  I remember vividly the first one, you had been so upset all day and I
couldn’t work out why so I had you cuddled up in my arms hoping to bring you
some comfort. Suddenly your whole body went tense and then shook with such
violence, I screamed with fear. It seemed as soon as it started it had finished,
I began to doubt it had happened then 2 minutes after another was to strike. My
brave little girl, that was to be a precedent for the rest of your life, so many
weeks spend on the hospital ward, so many different medicines trying to control
those evil things, seizures the brains way of sending your body into a complete
nightmare of spasms.

So we had our answer, the reason behind your world. Dad and I sobbed as we
sat in the car, we couldn’t even begin to drive home. In our head we tried to
make sense of the news, yes we had the reason why our daughter could have over
100 seizures in a day but no they couldn’t cure it. Oh how I had prayed that it
would be something that could be cured, but no. I heard the doctors words, I’m
sorry Mr. and Mrs. Meredith, Livvy has Rett syndrome, quite a severe case. Oh
just couldn’t be a normal case, had to go and be severe. Just like you not to do
something by halves.

Our emotions were wild, anger, rage, despair daddy and I felt them all. Our
precious little girl we were supposed to be able to protect you, how, why? This
wasn’t fair, you were beautiful why you? Maybe some say at this point why them,
but that never crossed my mind, the last years I had watched you fight your way
through the variety of symptoms with such spirit that I never felt why me,
always why you? I was so proud of my brave little girl, but hadn’t you suffered
enough. Rett syndrome NO. God and I had words that day as I sat in the car, I
had loved God from an earlier aged, loved, worshipped. Tried to live my life
respecting all others and here I was facing a future uncertain for my beautiful
daughter. Why?

We could have sat there for hours if it wasn’t for the fact that there behind
us, you were demanding our attention, in fact you were giggling at our tears and
when dad had hit the steering wheel with frustration you burst in to loud
laughter. You didn’t care that they had diagnosed you, so what; you just carried
on with the same strength courage and laughter you had for the last four

It was a revelation if you want to say that, dad and I had a choice, we could
let ourselves be consumed by fear and maybes or we could follow your example and
live our lives the best way we could. You were my inspiration. Your sisters
reacted the same way I suppose, way to young to understand the implications of
the diagnoses all they could see was that Livvy was just Livvy, they were so
right, Rett syndrome was what you had not who you were.

I’m not saying it was easy from then on, dad and I cried at night in bed, the
dreams that you hold for your children had all been lost, you were never going
to university, and have your first kiss, fall in love get married. Life for you
was going to be a struggle; you were going to suffer at times, how we so didn’t
want that. The sense of being inadequate was overwhelming. Our baby girl, Why?
We had to let go of the dreams we had for you and make new ones. How you taught
us the way of living for the day, what a special lesson we learned.

I’m not going to say the fear of losing you was never in my mind, some days
it consumed me, I shook with it. Dad was better at copying than me with this,
though he tells me now it was just complete denial.

May 2005 we nearly lost you; your syndrome had added a new element to your
seizures severe breathing abnormality. It came on so quick one minute we were
dealing with the run on the mill daily fits, next I was watching the hospital
staff trying to get you to breathe. The message had hit home, you weren’t going
to be here forever. The next 48 hours were hell we didn’t know if you were going
to survive you fought every step of the way, the inspiration you gave, how many
people could say they’ve been in an intensive care  ward and watched a so called
seriously ill child laughing at the male Dr, laughing I say more like flirting
with you. You could spot a cute guy at 50 paces. You minx.

As we left the hospital 2 weeks later after spending hours thinking this was
it. I left with a determination I didn’t know was in me. Who knows how long we
have here, life is not guaranteed. So we better get out there and make the most
of it.

We had always been an outgoing determined family, wasn’t going to let a
little thing like the fact you were severely disabled get in the way. We had
been places, thrown you in ball ponds, in oceans. No cotton wool treatment for
you, though I’m sure you would have slapped us if we had tried.

This was different though this made me question a lot of my beliefs, our
faith kept us strong, knowing that life was eternal was a great strength and
comfort, ‘when the body gives up the spirit carries on’ is wonderful and
inspiring but I happen to love and adore that body. That wild curly hair that
never stayed tidy. Those piercing eyes that communicated all to us, which could
see deep into our souls.  Your fingers how soft they were as I held them tight.
My goodness how I love you.

It was a time for life affirming decisions, a way of stripping away layers in
who I was. I had to find my inner strength and stand and fight. It wasnt easy,
despair was just around the corner, so many nights I just sat there watching you
sleep, thinking is this it, will I lose you today.

You young lady was a minx, whoever you met within five minutes were twisted
around your finger. The staff at your school loved you, they like us had
experienced the bad days when it had broke our hearts to see you struggle, but
just when our tears were going to fall, your mischievous side would show and
bring us laughter. How could we feel sorry for ourselves when you certainly

Your strength gave me strength. As a family we were as close as ever, we
realized the importance of making sure we told each other how we felt, the words
I love you were said with real meaning. Gosh how we laughed with you, shopping
was an adventure, if you weren’t shoplifting into your wheelchair, you were
kicking people who got in your way right up the bum. I mean didn’t they see you.
You took no shortcuts on life, you lived it. The Dr told us you wouldn’t walk
again, so my goodness you walked. People tell us it was due to our strength, but
you can drag a horse to water but you can’t make them drink. You were so strong,
so amazing. Everything at double speed, we now know why, you had to pack in as
much as you could. We took you camping you tried to escape from the tent, ice
skating the faster you could spin round that rink the better, canoeing you
wanted the oar to paddle yourself, donkey riding, the way you had Amber at your
beck and call. Tractor driving this list could be endless.

Your light shone so bright, you taught us all so much, your sisters are so
loving and kind, they really care for others. Have more understanding on life
than children of the same age, yes since losing you they have suffered maybe
more than others, but they wouldn’t give up one moment of there time with you
for freedom from their pain. They tell me they would do it all again in an
instant. You and your sisters are amazing; dad and I glow with pride.

The last year of your life had been so dramatic with its highs and lows, you
walked independantly for the first time since the seizures, but your abnormal
breathing was getting worse. I saw your sadness, you hated the way you couldn’t
get your breath, fear in your eyes, yet still you tried to smile.

The day your body died, I remember holding you, so peaceful and still. You
hadn’t been still. Your body moving no matter how much you didn’t want it to.
Now you were still with a beautiful smile on your face. Peace.

Our faith and belief gives us the knowledge that only the body died that day,
November 7th 2008 will be a date that will never leave our minds or our hearts.
No more smiles, no more twinkle in your eyes, no more Livvy as we could
physically see. We knew we hadn’t lost you completely. We know that your spirit
is eternal and that our mischievous Tinkerbell will always be with us. We also
know that you had lived your life to the full, you have achieved so much, gave
so much and taught so many.

Now it’s your turn to fly to be free from the syndrome that consumed your
body, from the aching pain in your joints, the fear from your seizures and
breathing. You are free.

Brodie and I sat today talking about you as we often do and we were wondering
what you had been up to today. We decided that after eating a lovely breakfast
you had been for a swim in gorgeous warm sea, played in the sand. Then you went
horse riding and galloped as fast as you could. You then had a delicious dinner
as we know you love your food, in the afternoon you had gone for a walk in the
woods as you love trees just like me, and then in Brodie’s words you sat
“playing with fairies and rabbits” and had a nap on the grass. You then visited
a room full of wondrous books and sat quietly and still for a read, you love
books, and you sitting still meant a lot. You then had a tasty tea, a Jacuzzi
followed by warm bath filled with bubbles. Then at bedtime you snuggled in a big
princess bed. A lovely day you had young lady.

It does sound great, but part of me thinks that although I know all those
things are there for you, today you were in the paddling pool with your sisters,
running in the garden with them. Close to us all.

Olivia Georgia Meredith not a minute goes by when I don’t miss you, I have no
regrets, having you as my beautiful daughter was such a gift. Gosh we had bad
times, but inner strength you have shown and given me. The true meaning of the
word love, the amazing way of really living life. Some people say you came to
teach, to me you came to give your love, your joy, your strength your
inspiration. I thank God every day for the gift he gave me in you. Some people
offered me pity when then heard of your condition. I pity them in a way as they
never got to experience the innocence of a child who laughed just because. Who
loved just because!

That’s a great way to live life, just because. No reasons needed, no
questions asked, or answered, just because.

I’m not going to tell you that some days my grief doesn’t overwhelm me of
course it does. The physical missing of you has left such an ocean in my life.
Your sisters still cry, Dad still gets angry. We were talking about our grief
today, and I asked the question what would Livvy do, if we cried all the time
and didn’t live our lives to the full. Kennedy said it perfectly “she would kick
our butts”. Oh you so would.

I’m struggling to find the words to bring this to an end, I’m not sure if
it’s an essay for you, about you or a letter to you. One word I couldn’t end it
with is goodbye that word means leaving. I know you haven’t left us; you are
just out of sight for a while. So I’m going to end this with,
See you soon
and of course I love you to the moon, stars and back again.

Mom xxxx

Copyright © Livvy’s Smile 2011
All Rights Reserved.

7 thoughts on “My letter to Livvy

  1. Sara – it was a pleasure to meet you at CyberMummy11 today. If your decision to post this had anything to do with our conversation, then I am humbled. You are a remarkable and brave woman and a very sensitive writer. I’m sending this from my personal Twitter account. x


  2. Chickenruby

    My husbands best friends daughter was born with Retts. I was one of her respite caters, always a smile and yes wild hair, she got so cross when anyone tried to brush it. She died dec 2009 aged 22. It was and still is a sad time for her parents, siblings and all who knew her. I can’t imagine what it must be like for you and your family.


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