One of the hardest parts about Rett Syndrome for me is that Brooklyn lost her voice. I know she has SO MUCH to say but she can't physically say the words. Often throughout the day I wonder what she would say to me?
Would she rather have pancakes for breakfast?
Would she rather not wear either of the shirts I gave her to choose from?
Is she mad at me for something I said or did or maybe that I didn't say or do?
What was her absolute favorite part of school today?
Did anything happen that hurt her feelings or made her sad?
There are just SO many things.....
Yes, we have our yes/no cards and our communication boards and we try different computers(and are still trying to find "the" one) But NOTHING comes close to my daughter having her own voice to say whatever she wants whenever she wants. As you can tell - I can EASILY get completely bummed out about this topic but just yesterday a little boy encouraged me to look at things in a different way.
A mother of one of the kiddos in Brooklyn's class was reading one of her purple cards for the first time (her business is helping Team Brooklyn with fundraising!)
Anyway - after reading her card she went home and was asking her son about Brooklyn. My favorite part of their conversation went like this....
mom: "sweetheart, does Brooklyn talk?"
son: "no mommy, God has her voice"
WOW - "God has her voice"
I am a believer, have been all my life, but not once have I thought about God having Brooklyn's voice. Believe me, I have struggled with lots of things since Brooklyn's diagnosis including my faith - I have yelled at God, begged God, cried on my knees talking to God. During an interview for a magazine I was asked about my faith.
The truth is - I do not know where I would be without it. Yes, I am mad a God and I have asked alot of "why me, why my kids" but when it comes right down to it....God is Good and he has a plan for my life and for the life of my kids. I know that. On my bad days, it still hurts and I still yell but ultimately God is in control and I will continue to pray for understanding and of course pray that our cure for Rett Syndrome come SOON.
But for today, in this moment, I want to thank that sweet little six year old boy for reminding me that God has us all in his arms and yes, he has her voice.......
Wednesday, April 6, 2011
Her Voice
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7 comments:
That is so beautiful. It brought tears to my eyes! The love and understand of a child is amazing.
Out of the mouths of babes. What a wonderful thing for him to have said. I'm so glad his mom shared it with you. Brooklyn is changing the lives of the kids in her class/school, all for the better.
This brought tears to my eyes too. What a special little boy. Really, the kids that are around our Rett girls are really privileged. They are being exposed to something that a lot of people will never have the privilege of. I'm sure he'll never forget her. Gramma Myrna
WOW.This brought tears to my eyes.Children are the God's treasures :)
You are a really strong mother and I really admire this :)
Sometimes God allow things to happen to strengthen us more and more and as His words say it all :
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
Last time I read in a book that God promises a safe landing but not a safe trip.This made me think about how sometimes we have many ups and downs in life which in the end turn out to be only trials we've been going through because God made it easy at the end.
Always be strong and press on the Lord for He is your deliverer.
When we put our problems in God's hands,He puts his peace to our hearts.And from our first breath to our last, we are in God's care <3
I believe in Miracles ^^
Thank you so much for sharing this! My heart goes out to you and Brooklyn, and I know God has wonderful plans for her. Even we, who have voices, have the Holy Spirit who "helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words." (Romans 8:26) This made me think about how much louder Brooklyn's internal prayers must be conveyed by the Spirit. What came to mind was when Jesus said "And everyone who has left houses or brothers or sisters or father or mother or wife or children or fields for my sake will receive a hundred times as much and will inherit eternal life." (Matthew 19:29) TBrooklyn's voice must be ringing out a hundred times as clear in heaven. God bless you both, and all of your family.
oh wow! this made me cry.I have SO been struggling with this recently.Thanks for sharing the fact that you have struggled with your faith too and God bless that little boy for his lovely words..unique xx
Great! i had a teary eyes after reading this one. .thanks for sharing.=)
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