"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Tuesday, April 19, 2016


ok, yes...let's get it out of the way...I have not blogged here in years... yes, I need to catch you all up. Later on that one...

Recently I have really worried/stressed/feared/been incredibly concerned about how life for my sweet baby will be as an adult.
The image above was taken at her last cheer competition. Yes, that child who was "branded" to not do anything has surpassed more than imagined. We still have a LONG way to go and I know this.

I do my very best to live each day in the present moment. I really do.

BUT! I am human and have those moments where I cannot breathe from whatever "it" may be, but then I dig deep and #choosejoy

My concerns for Lilah are real. They are raw. They are honest. They matter today each day ahead:
  • Cognitively she cannot explain her exact specific needs effectively
  • Physically she gets incredibly tired
  • Vocally she cannot express her needs and wants properly
  • DELAYS....
She has become this amazing little person who can ask for what she wants and needs at home in a quiet, secure setting. But, when she is in an environment that causes stress or strain she begins to shut down and look for the person closest that she trusts to aid her. I have been teaching her to look at people, in the eye, and explain what she wants and needs to them. Dinners out, gas station, grocery store, you name it.
Here is where my fear comes in...
She doesn't want to tell those people. She wants to tell me. She knows me, trusts me, and has faith from our history that I am dependable, honest, and trustworthy.

Your first thought might be the same as mine, "What, I am 38 years old and I am STILL learning to assert myself for what I want and need without feeling insecure for that desired thing." Sista, you are NOT alone. BUT...that isn't the point here....

Someday I will no longer be on this earth. That isn't a woah is me, it is a fact. Some day I will be called home. Will I have prepared my Lilah properly to be independent to know she will lead a good life without me? I will NOT have her institutionalized. I will NOT!!! have it. You better be dang sure that I will hang on until 110 years old to guarantee my child is not put in a room and "forgotten."
Because of Lilah I have learned to become this person I never saw myself as, but always wanted to be.... self-assured. Fighting FOR her has taught me that expecting more from people doesn't mean I am a B@&^%, contrary to what some might think, it means that I know there is more out there and I expect the best from each person who encounters my kid. IF you cannot give her your best, then get out of her life. Sorry. She needs you to step up to the plate and be who God called you to be. Lilah needs you to put your selfish needs and wants aside and give your extra effort to help her become what I know is possible for her. I expect greatness because greatness is in each and every one of us.
Please do not get me wrong here.
I am so human and such a woman. I doubt and worry and fear, but I do not stay there.
I know today that other people and circumstances do not dictate my "happiness."

HOW do I teach this to all of my children, but especially to the child who must work harder than any of us at this life?

Many thanks to those who have helped, taught, loved, aided and not given up on Lilah, me, our big family, etc and stayed in the game to help. Your presence is THE best present. For those that are too ashamed to admit their mistakes...you are forgiven....please leave the pride aside and be a part of this life-changing human being.

Please help me help my child. Please.

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