I want to scream and shout

It’s been one of those weeks when I’ve wanted to scream and shout and demand my daughter comes home. Yet I know that is just my selfish desire. I know she is free from the evilness of Rett Syndrome, free from the endless seizures, abnormal breathing and the pain that plagued her life.

Isn’t it amazing how our memories seem to block out the horrid moments, I have to search the stored up images in my mind to remember the bad times. Why do I wish to find these memories I can imagine people asking, why do I want to remember the bad bits. Simply my answer is this; I need to remember the pain she is free from to relieve the pain of my heart.

Some days I feel like it was only yesterday that Livvy passed away, yet we are heading towards the two-year mark. Two whole years without hearing her sweet giggle, stroking her soft skin, I miss her desperately.

While this month is harder is simply because its Rett syndrome awareness month, I am writing, speaking about anything that will raise awareness of this devastating condition. I don’t regret this as the more awareness the better but for a grieving mom it is hard, it hurts.

I am so excited about the new research for Rett Syndrome the hope of the cure. Yet my heart aches for Livvy it is too late. This is a pain that will never leave my heart.

I remind myself of her amazing strength her incredible courage and I know she is in heaven praying for the cure just as much as I am. Her friends, their families we have so much to pray for.

My heart is on a roller coaster full of ups and downs that are turning my stomach. Grief, guilt, regrets the list of my feelings is endless. The reality of my life is that I miss her so much it hurts.

Holding on to my faith gives me strength and while I know Livvy is safe in the arms of Jesus this doesn’t stop the missing, the emptiness of my arms.

I was taken back to a comment my younger daughter spoke a while ago, “don’t see it as one more day without Livvy see it as one more day closer to being together”. This isn’t me wishing my life away just another way of reminding myself we will be together again. I will hold her again.  Until then the tears will continue to fall, as will my quest for the cure for Rett syndrome.

Please check out the Rett Syndrome Research Trust and help us in our battle for the cure.

How I dream of doing this again


About sarawith4

I'm a stay at home mom who loves her faith and and family. I am a new christian and still learning about the glory and grace of our Lord. I'm also a grieving mom who has to try each day to smile. Knowing my child is with the Lord brings me comfort but doesn't take away the pain of missing them.
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4 Responses to I want to scream and shout

  1. Tina Hillier says:

    Hugs Sarah,
    Ifind it hard at times to tie together my certain sure faith in God and His perfect will and my feelings as a bereaved and troubled Mum.
    So glad my salvation is not based on my feeble faith and erring self will.
    Jesu’s death was the perfect finished work that assures us of the glorious future ahead of us, and that glory will far surpass any of the grief and sadness of this life.

    Sending all my love many hugs and assuring you of our prayers.

  2. Kathy Gilbert says:

    Safe in the arms of Jesus. That is the only peace we have at times like this. Knowing when we get to heaven we are made whole again. Your beautiful little girl is whole and safe. God bless you and give you strength to get through these feelings and loss

  3. Jenifer Klement says:

    I have prided myself in not crying for a couple weeks (in a row) over my Ella’s diagnosis of Rett Syndrome this past June. I cried reading your blog. Im so afraid for what I know is coming for her and us. My heart aches too…I would sooo love to be your friend. Will you please contact me??? My email is: klement@clarks.net and my name is Jenifer…hope to hear from you…blessings, hugs and love…

  4. Hayley says:

    *big big hugs* I know I still need to send you an email to tell you about a few bits anyway but remind me at some point to speak to you about an idea I’ve had for Livvyssmile.
    I wish I’d been lucky enough to meet her because she sounds like the most wonderful of girls.
    Love you xxx

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