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.