I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.
How can 12 years just disappear in a moment?
Yet I know in grief, time is only my enemy.
I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.
Grief is a complex devil, playing games with your heart moment by moment, memory by memory.
Does it ever end?
Only with eternity I guess.
Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.
I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.
Why does your memory invade your dreams?
Is there nowhere free from grief?
I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.
I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.
I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.
If love could have saved her life she would be here.
No the question still stands unanswered, our hearts still forever broken.
I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.
I wake still desperate to hold my daughter once again.
The new day begins,
I trust, I breathe and I hope.
Until we meet again my beautiful girl, until.
Joining in again with five minute Friday, set your timer for five minutes and write.
Rebel with kindness 
I’ve never lost a child (although came so close twice) so I can only imagine your grief. But you write so movingly about it.
May God hold both of you in His loving arms.
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Please know this, the love that you gave your daughter during her 12 years made her so so loved and cherished and she knew this. She passed on, safe and loved. Many children grow up never knowing that feeling. She was robbed of time and put through pain, but she was never without your love. You have lost her but she never lost you. That means everything. Take this sadness and make wonderful joy from it in her name to share with others in any way you can. She should be here now, but your love for her can live on in others. Xxxx
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Thank you, I was so blessed to be her mama but my goodness the missing is overwhelming. Thank you so much for your comment xx
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Reading your post fills me with the smallest drop of unimaginable loss you’ve suffered. And even that is hard to bear. Our daughter was recently diagnosed with Rett and the thought of experiencing what you have is too much. So thank you for sharing it and know that I and many like me, are here sharing in a small part of your suffering with you.
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Oh my heart aches for you the diagnosis I’m not sure if you have read my book, living like Livvy but what I do want to say that in the last ten years especially the understanding of Rett syndrome is so much wider and deeper. What I faced with Livvy shouldn’t happen again Drs know more snd the research being done is so fantastic. I am a great supporter of reverse Rett snd I truly believe that a cure will come.
Yet regardless of her diagnosis Livvy loved every second of her life. Even in the hard days she found joy, we loved life, ice skating, rock climbing and so much more. I always say Rett syndrome is what she has not who she is. She was a mischievous sassy madam who I desperately miss. My beautiful blond haired gift xxx
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Tears in my eyes, reading this.
No, the grief will never end,
and you won’t be OK,
but hold on to the hope, dear friend,
that there will come a day
in a far-off golden place
(not next week or next year)
that God will wipe clean every trace
of pain, and every tear.
Whom we thought lost will smile again
with inner light of vibrancy,
and broken hearts will quick-regain
the knowledge of the victory
gained through a Father’s grieving loss
as He beheld the laden Cross.
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Thank you so much your words always bless my heart xxx
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Oh my goodness, I didn’t know your story and heartache. Thank you for your beautiful writing and even your courage to share your honesty and pain. You are in my heart. (Karen FMF #4)
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My heart breaks with you, friend. My younger son has a (now) mild chronic illness which appears to be resolving itself away as he enters puberty. I remember those early days, though, watching his thin body fall lifeless on more than one occaision. A desperate moment, indeed, for him and for us. I pray that, somehow, God would comfort you in those moments and fill your memory with the times that brought you joy.
Amie. FMF #10
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God has given me so much strength snd the courage to adopt my son and walk this walk again x
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oh…. that lingering sorrow. Children aren’t supposed to leave before we do, are they? Hold on to those good memories. FMF15
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I have not lost a child, but I don’t think grief ever goes away with so great a loss. May God comfort you on those hard days as only He can. May we all hold onto the hope of one day seeing our loved ones again. Blessings!
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Thank you for sharing. Many hearts feel the hurt for your grief. Such true statements, grief never ends. But each day offers another chance to trust, breathe and hope. Prayers for comfort for you today.
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Such deep loss. Much tender love to you. Grateful for your willingness to share your story and your memories, hard, and holy, with us. Thank you so much.
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My heart hurts for your loss. That’s not the way it’s supposed to be, for a parent to lose a child. There are no words. Sending hugs, and prayers for comfort and peace.
Sandy, FMF #30
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