Today I have posted a copy of a letter I write for my daughter Olivia, this letter was a way I could show the world how amazing she was and in a way voice my love for her.
Not a day goes by where I don’t miss her amazing smile. The memory of her courage is what inspires me to carry on.
I share this letter today in hope that it will somehow touch you enough to move you to help us in our quest to raise awareness of Rett Syndrome. The need for funding for research!
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 lives.
As I sat in that doctors office I had to face the realization that I couldn’t. Something stronger than I had begun 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 behaviour 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 doctor’s 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 years.
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 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 wasn’t 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 didn’t?
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 their 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 independently 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.
Some of you may have already read this letter, I don’t apologise for that. I just hope that it will inspire you to share it with others. Imagine if you only share it with one more person that’s one more who will be aware of the devastating condition of Rett Syndrome.
Please join with me in the battle against Rett Syndrome.
If you would like to know more about Rett Syndrome please check out the Rett Syndrome Research Trust website.
Thank you. xxxxx